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Thursday, April 3, 2008

My Hiatus from my MS Medication - The Pros and Cons - a valuable lesson learned....


My Hiatus from my MS Medication - The Pros and Cons
Why I did it, and how it affected me...
At first I thought I deserved a break from using it. After all, it had been longer than a year (thankfully) since having a bad exacerbation. But most importantly (at the time that I began the hiatus) was that I was tired of my injection sites looking as they had been. Many of you know, the puffy and bruised looking, tender, or hardened skin reaction that can often be found from those doing sub-cutaneous injections.
How often do you, my ms peers, hear or read or know first hand of these skin reactions?
How often do you hear from a peer, who (like me) is now admitting of the temporary halt of his or her medication?
How often do you read or see this admittance in writing?

I do hope that at least some of you, will reply to this story by leaving your comments for me and others to read...

I know that my doctor will not be happy to hear that I stopped taking my medication when I did. He might be hearing of it first-hand, as I know that he reads my e-Newsletters and might even now be reading what I post to this blog.

I know that my own family will not be happy to read what I did. My wife has known since the beginning and has been on my a-- about it...

Okay, aside from the skin reaction ( which really isn't a big deal), I was often depressed. Yes, of course I know that this too is an MS Symptom but it can become worse from the interferon too. And aside from the skin reactions and the depression, I was getting severe skeletal pains.
Yes this too, could be just the MS "or" it also could be from the interferon.

I don't know if you realize, but these medications have side effects.. Sometimes, very serious and consequential side effects. Of course I easily gelled past the initial side effects of using an interferon. You know, the flu-like symptoms.. That was a breeze and that was many years ago. After all, I had been using this medication since April 2002.

Well let's get down to what happened. Somewhere near to mid February (2008) I decided (foolishly) to stop taking my injection. It was only supposed to be for a week or two. Well, after two weeks, I was feeling GREAT. Yes, I mean REALLY GREAT.. No depression, no body aches, and the bruising on my belly and legs began dissipating. I asked myself, "Self, maybe you don't need to go back onto the medication so soon, You've been feeling great".

My energy actually increased. I am sure the cooler temperatures, here in South Florida, helped this to occur. Cooler temps causing less fatigue. But in either case, I was feeling good. So, two weeks stretched to three and then three stretched to four, without taking my MS Medication.

I didn't even need to take Tylenol as much as I had been taking. No pain, no tingling, no headaches, and best of all NO depression.. when someone asked how I was doing, I noticed how often I responded that I FEEL GREAT, or Fabulous or other similar words.

I was able to think clearly and positively. I was getting so many things accomplished that I was not able to do prior to the middle of February. I even began playing golf again and got in I think 5 games during those weeks. Okay so yes, I played crappy, but I PLAYED and it felt good to be able to get on the golf course and do what I so often used to do. Play Golf. Of course those that I play with, knew how I once played and no why I now play, well just just say, not so good.
But again - I was able to ride in the cart, get to my ball and swing..... I was able to walk up to the greens and 2-putt ( for those that understand this)..

Then week five came along and BLAM... !!!!!!!
It first began as that annoying buzzing feeling, like being connected to a wall outlet from the top of my neck down to my feet.. Okay, I thought, I can live with this... Then within days, I began forgetting things again. Like getting lathered-up in the shower and leaving the stall before rinsing.. Or getting dressed while also putting toothpaste on the toothbrush but forgetting to put it into my mouth. Or putting my sneakers on without my socks.. I never did that before, why now......

Then just a couple of days later (week six), BLAM AGAIN !!!
Something major now has returned. My Vertigo. Sure I had had problems with vertigo on and off over the years but not to the degree that this was.. This was how I used to get it 5 and 6 years ago. Where the inside of my head felt like a wet towel that was being wrung-out, swishing side to side and then the whole world began to spin.. I was driving when this first happened, just a couple of weeks ago but fortunately ( I have no clue how), but was able to pull off into the shoulder and wait for the effects to subside. Then drove 40 MPH on a 65MPH highway to get home.. Ooh that was weird, I thought. The while returning home just a couple of days later with my wife next to me int he car, I swerved to get onto the swale alongside a side road near to my home. She asked what the problem was and I had to tell her what happened just a few nights previously, and then that it was happening again at that instant.

This time though, not only did I feel like I was being pulled inside out and left to right, but the lines on the roadway began to criss-cross over each other.

The very next day, in the morning, I was in the backyard with my dogs and the world started spinning. As in years past, I had to fall to the ground and grab the grass to hold on for a space flight.. In the past it happened in my home, in restaurants and other places when I had to fall to the floor and just try to HOLD onto the floor, the carpeting, whatever!!!! Just trying to remain in one position. When it's happened in the past, I had to be covered in ice, to cool my body and kill whatever inflammation ... Take some pills and try relax.. That was the only way to get out of it......

In addition to what I just mentioned, quickly returning to me were symptoms that had happened to me in the past, just never all at once:
Slurring, blurriness, double vision, foot drop (tripping over my own feet),the forgetfulness, inability to concentrate or make decisions, the headaches have resumed full blast and the pain on the right side of my body. Leg Pains so severe I could barely walk... And I developed a fear of getting behind the wheel of my car, not wanting to drive too far, or on roadways that are high speed.
And most scary, is not knowing where I am, when driving only across town, or as I am heading-out of my own neighborhood...

Quite obviously I began relapsing (exacerbating).. Of course like I mentioned above, my doctor has not known until maybe now, what I did to myself. He probably would have wanted me to immediately resume my medication, which I obviously already re-began (last night having had my third injection since re-commencement) and maybe take steroids which I surely do not want to do after working my tail-off on losing (thus far) 30 Lbs since last August.

So for the last few days,I have stayed close to home, have rested much and am trying to get myself back to where I was (medicinally), prior to mid-February.

Lesson learned: the side effects of the medication are far less damaging than whatever damage I just inflicted upon myself. The Medication's side effects are far less destructive than what this disease (MS) can do to us.

Bottom Line : Never again will I do, what I just did, no matter how good it might feel for the short interruption of taking my medication.

I wrote this so that you can have advanced warning of the danger to stopping your medication. If you are experiencing problems with your medication, immediately speak with your doctor or MS nurse.

Now that you have read about My Hiatus from my MS Medication, you will know that the CON'S (Negatives) of stopping, were far more detrimental (damaging) that the short lived Pro's (benefits). I now look forward to my next injection.

Please leave your comments at will !!!!!

Thank you.

Sincerely,

Stuart

p.s. - Remember that the meds do not halt the disease. They only thwart further progression.
By not taking the medication, it's obvious that the decline only continues. Therefore you
(and I ) must not allow the MonSter to have it's way.

p.s.s - see the follow-up stories to this hiatus

.


64 comments:

Cherie said...

Stu,
You describe how I felt most of the time on one interferon for the two years I took it but the interferon I am on now has effectively stopped the depression and the bone achiness and dizziness. You could not pay me to stop this now despite the site reactions (Arnica Gel is helping them I have discovered) because I sense that if I did stop...I'd only tumble downhill quickly again and I've worked too hard to get where I am after nearly 5 years on my current med.

Anonymous said...

Stuart, Sorry to hear you are tripping on LSD, without using it. I know your doctor won't be pleased that you stopped the MS meds. I made that same mistake years ago, when I started trying just about anything that wasn't FDA approved. Snake venom even.

I promised my Neurologist that I would NEVER do that again and I am glad that he is such an understanding and caring doctor.

As far as the injection site, I noticed last week, that when I don't insert the needle deep, I get some good, red marks. Normally I don't get them so bad, because I go deep. Go deep young man and stay on the meds.

Anonymous said...

I was diagnosed in 1978 though sick five years before that.. I have never taken medication except LDN (ldn.org) My two sisters, nieces, cousins, second cousins all have MS. They have tried every medication out there. Nothing helps. I still walk, though it is not a thing of beauty. I watch my diet and take supplements. Mayo Clinic discovered a breakthough but it has to go through clinical trials (5-7 years) so hopefully the days of injections will be over. Thank you for your column and bravery. After listening to you, maybe I will try drugs.

Anonymous said...

I went off medication about 4 years ago. I was working, could drive, and like you, felt wonderful at first. I now have to use a scooter and can't drive. I now know that the side effects of the medication are well worth the benefits. I hate the injections but since resuming the shots I am slowly regain some strength and mobility. I'm praying for a cure but until then I'll stay on the medication.

Anonymous said...

Good for you!
I was diagnosed in '93 and began Subcutaneous Therapy several years later (I forgot and that is my major symptom cognitive impairment) after having several immediate post injection reactions (which actually feel like you must be having a stroke) my anziety to shoot up was too great to continue so I stopped with my Doctor's understanding that I was under his watch. I see no significant symtom differences; nor, did I feel any while I was using the drug.
Good Luck to You and Keep on Keeping on.

Anonymous said...

Thank you for your such helpful information always Stu. I am going through those hard times with the medication and as per my Dr. I will stop it for a week only to see how it goes. I had a very bad pain attack and many red allergic injection sight reactions plus very tired and depressed as well. I'm sure the Dr. will have me start again after the week of break. I have the same discomforts as well and take it one day at a time. I am grateful there is medication and take it as my antidote of life.
God Bless us all and let's keep our spirits up!
Katerina

Anonymous said...

Stu,

I have been on my medication for 13 1/2 years. I recently had a blood test to determine if I was building up antibodies, but I wasn't (thank heaven!). I inject every other day, and am too much of a chicken to go off my medication since the experiences you described when you stopped your medication are still fresh in my mind after all these years. HOWEVER, when I want a break from my medication, I give myself a "treat" by skipping a day, but I never do this more than twice a month. It gives me the small break I need and the continual protection of the medication. Thank you so very much for sharing your experience.

Carole

Stuart said...

MY SINCERE thanks to everybody who has been leaving comments.
If you can though, try to at least leave your name or other info so I know who to thank.

Vicki Pomeroy said...

Stu,
I was originally diagnosed in August 1980. We relocated here to the Atlanta area in 1991. I shamefully used my connections from Johns Hopkins and the Washington D.C. area and immediately started working with the NMSS (GA Chapter) on the creation of what is now known as "The MS Institute at Shepherd".
I am blessed and honored to be a patient of one of the BEST MS Neurologists in the country, yet I also took a MS Med Hiatus. My doc was aware of my "Quitting" and chastised me severely. After injecting daily since September, 2000, I just couldn't take it anymore. I started IVIG in 2004 and was officially pronounced "in Remission" in July of 2007. I stopped injecting, weaned myself off of Baclofen and Neurontin, lost 25 pounds and feel WONDERFUL!
Last week I went to Shepherd for my MRI. The news was not good as I have developed two (2) new, but tiny, lesions.
Next week I start back on Copaxone. I am paying for it but I surely enjoyed my 10 month hiatus.

Cyndee said...

Hi Stu,
When I was diagnosed I started Copaxone.
I took it for a year, and when another lesion appeared the doctor told me I could stop. He wanted me to go on the other interferon drugs, but one of the side effects is depression. I said, "no way".
I went without taking anything for my MS for 2 years. I had about 3 exaserbations a year. But, I felt fine not taking anything.
Then I started taking Tysabri, I've not had an exaserbation in over a year! I feel wonderful, some Ms nerve pain here and there, but that's it.
A friend of mine started taking Copaxone and she had so much anxiety and it made her so hyper she quit taking it. She is not taking anything now, and she is back to her old, happy self.
The doctors still tell her that anxiety and feeling hyper is not a side effect of Copaxone. oh, well........

Joan said...

Hi Stu - perfect timing for this post.
I have been on copaxone (non interferon) for over 8 years and am now transitioning to secondary progressive ms. The injectables aren't useful for SPMS, so I am considering stopping my shots. HOWEVER, after reading your story I will wait a little longer before stopping. I'm not on an interferon so don't get the flu-like side effects, fortunately, so won't really see a difference in how I feel anyway. I just have to poke every day. Sigh...
Your biggest fan,
Joan (from shortinthecord.blogspot.com)

Ellie said...

Stu, If you are dissatisfied with the side effects of your medication, you might consider discussing Copaxone with your MD. I have lived with MS for over 35 years and began Copaxone in December 1998. It has far fewer side effects than the interferons and is at least as effective. We all need doctors with whom we feel comfortable enough to discuss reasons for wanting to change or stop therapies and who are responsive to our concerns. After all these years, I am switching to a new neurologist because I was dissatisfied with his responses at my last visit. Think about it, you would not return to a restaurant if you did not like the food. Thanks for all your work searching out the research and other news we all want to know about. I hope that whatever you decide about your treatment, with your doctor, works and has you right side up again.
Ellie

Anonymous said...

Yes thank you for your bravery Stuart...I did the same thing you did after trying 3 injectable medications during my 8 years of diagnosis (I actually have had MS for 21 years). and yes I flared when I stopped injecting but these meds were not working for me and one of them I had an extreme reaction. I wish my doctor would prescribe LDN... instead, I am having monthly 9gr IVIG infusions. It gets so scarey when you stop.. and gets scarey when you inject as well!

Lauren said...

Hi Stu,

I can understand your logic in wanting to give yourself a break from your injections... they are no fun at all.

Unfortunately, most MS patients don't realize that once there is nothing to try and prevent the disease from advancing/progressing at "its" own pace and "silent lesions" are usually forming during that "break time", ultimately one winds up having relapse after relapse, with continuing disease progression, along with accumulating disabilities (which hopefully won't be permanent), even though the patient feels really good just previous to that time.

When I was on Avonex, I could not handle the side effects, and when I switched to Copaxone, I failed that too.

As a MS patient for 32 plus years, I can happily state that I have been on Tysabri therapy since October 2006, and since that time, I have not had a relapse nor any disease progression (that 17.5 months, woo hoo!).

The nice thing about Tysabri is that there are no injection site reactions as it is administered via IV every 28 days! I don't have any side effects from Tysabri whatsoever, and I always look forward to my next infusion (A MS patient that looks forward to treating their disease with one of the FDA approved therapies?!?)..., Gasp, raising my hand, yep, I'm one of those of us patients!

Because "Tysabri is generally recommended for patients who have had an inadequate response to, or are unable to tolerate, alternative multiple sclerosis therapies", it is my belief (and I'm not a doctor) that this includes MS patients that are unable to tolerate not only the different side effects from the ABCRs, the different injection site reactions, and MS patients that are "needle phobic", Tysabri might be a very good alternative MS therapy for them which only needs to be administered every 28 days via IV.

Not to mention the fact that Tysabri is 67% effective at preventing further relapses, their accumulating disabilities, and slowing the disease process, whereas the ABCRs are only 29% to 34% effective.

I hope that you are starting to feel better Stu, and I'm glad that you are now back on your MS therapy.

Good luck to you - and I'm sending you and everyone here all my best -

Lauren :)

Anonymous said...

Hi Stu,

Sorry to hear that you got hit so badly! There may be a small ray of sunshine on the horizon, though. They are getting close to approving some of the new oral drugs - no more injections. Doubt they've fixed the other side effects, but it's one step forward. Here is my article on it if you're interested: http://www.msakc.org/Articles/NoMoreNeedles.htm

Laurie Long
Webmaster
MS Assocation of K.C.

joeyj said...

I too took a hiatus from self-injections. Mine was for one year. I have been living with MS since 1985, self-injecting two of the hit parade ABCR meds, for over fifteen years.

Over the "VACATION" year, I did not notice any clinical changes, nor did the neurologist. My MS had landed me in a wheel chair two years before my hiatus. My wife and kids did not notice clinical changes either. Until the extra boxes of the med started to take up more space in the fridge. I was caught, guilty as charged! So call the MS police.

Now, I have a wonderful new neurologist, who takes time with her patients. I have not told her about my hiatus, but that was years ago and under a different neurologist's watch.

I moved from the intereferon to a monoclonial anti-body ten months ago. Hurrah! No more Injections. Just a regular visit for an infusion. More than that, I am going through the long process of learning how to walk again. I have not had to go shoe shopping for years. Going shopping for shoes will be as exciting as a ten year old's birthday.

What ever drug therapy patients are on, they need to remain compliant.

By the way, I admire you for sharing this very important vacation story. You are AMAZING!!!

joeyj said...

I too took a hiatus from self-injections. Mine was for one year. I have been living with MS since 1985, self-injecting two of the hit parade ABCR meds, for over fifteen years.

Over the "VACATION" year, I did not notice any clinical changes, nor did the neurologist. My MS had landed me in a wheel chair two years before my hiatus. My wife and kids did not notice clinical changes either. Until the extra boxes of the med started to take up more space in the fridge. I was caught, guilty as charged! So call the MS police.

Now, I have a wonderful new neurologist, who takes time with her patients. I have not told her about my hiatus, but that was years ago and under a different neurologist's watch.

I moved from the intereferon to a monoclonial anti-body ten months ago. Hurrah! No more Injections. Just a regular visit for an infusion. More than that, I am going through the long process of learning how to walk again. I have not had to go shoe shopping for years. Going shopping for shoes will be as exciting as a ten year old's birthday.

What ever drug therapy patients are on, they need to remain compliant.

By the way, I admire you for sharing this very important vacation story. You are AMAZING!!!

Stuart said...

Stuart Says:

I again wants to thank every body who has left their comments and to those who have sent email directly to me.
Many are amazed that I could write what I did and mention how delighted they are have been able to read this.

Some have asked How I was able to write what I did and my answer is quite simple:

"Remember that my mission is in keeping You Empowered with MS Related Information.

THIS story needs to be read and understood by the patients and/or caregivers, as to what
will happen if they do not use their medication.

And so, I WILL continue with my Mission."

Shub said...

Greetings and Good Day Stu',

I read ur story and in fact got shock of my life!
How on earth a Medicine Man like U can dare to screw up on schedule!!

"If U're in Rush... remember to Flush"

It sounds weird but this is the fact of life.

In short All I can say or advise;
Please do not deteriorate the healthy or the new born cells!!!

Take care Man,

Keep up the Good Work but equally, religiously follow ur medicine!!!!

Shub
shub.s@hotmail.com

Jane said...

Hi Stu,
I'm sorry you had a rough go there.
I am blessed, for altho I was DXD in '89 I was not started on meds until 2000. I switched neurologists, started Copaxone, and at my neuro's suggestion started LDN in'02 - stopped Copaxone within 6 months.. .as you say ALL the meds (CRABS) only hopefully lessen the exacerbation &/or the # of them. That is what LDN's claims are, with NO side effects. My neuro keeps prescribing LDN as he HAS seen what it does....we are very happy.
Best of luck and God Bless, Jane

Anonymous said...

Hi, I've just come off a "hiatus" myself... After the unexpected and devastating death of my dog in December, I went into a depression. I just didn't feel like doing my daily Copaxone injections. I just couldn't face that painful injection every night and the hard, itchy, painful lumps and bruises...
So, I missed a few, then a few more and a few more. I did this for 3-4 months and knew I was experiencing more fatigue, more buzzing and other sensations and numbness etc.
Thankfully, without having a total relapse I talked myself into going back on the full schedule.
I haven't really admitted this to my husband as I know he'll be angry with me. After all, MS doesn't affect just the person who has it and it was probably selfish of me to do what I did.
Patrice

Paula, West Jordan, UT said...

I have had the spins myself. It was like a roller coaster ride but not fun at all. I have been on B,C and A and now on Tysabri. B worked for five years then stopped working. C worked for two years and then I had a huge reaction to it and had to go off it. "A" never seemed to work at all and Tysabri isn't working so good for me either. My next try and last is Novantrone until something new comes out. I was on the Zenapax study and did great until I had a UTI and my family Doc prescribed Bactrim and I had a reaction and my platlets dropped and I was kicked off the study. You may have read about the study findings. Dr. John Rose did the study and I was the one with ITP that had to go off the study. Needless to say I am bummed.Now Biogen got involed with Zenapax and is trying to make it a injectable and it isn't working. I will vent this on my blog.
My advice to people and I am not a doctor but stay on your medication because once you start the back slide of MS you may not get back to where you were. Good luck to you and keep us updated. Paula

Stuart said...

1) Again my thanks to all leaving comments and also to the many aho are not leaving it here, but instead, opting to send me an email.
2) Many of you have done this anonymously and I can't possibly thank you directly, so please take this as my way of say Thanks.
3) There may be some of you, viewing this site, who are not yet receiving my e-newsletter, or who have no clue the amount of things that I have done or continue to do, for those of us, with MS. To know more, find the link (on the toolbar) that will take you to my homepage, MS Views and Related News.com. Once at my homepage, or via the link from this blog, there is a link to Opt-in for the Stu's Views and MS Related News, e-Newsletter. Click that link and then complete the info found.
I wrote this Story because, to know me you need to:
Remember, that my mission is to keep the patients informed with MS Related Information.
THIS story needs to be read and understood by the patients and/or caregivers, as to what will happen if they do not use their medication.

4) AGAIN - My Thanks

Anonymous said...

STU, WELL I THINK WE HAD THIS CONVERSATION ALREADY BUT I'VE BEEN OFF MINE FOR 5 YEARS. I LASTED 9 ON.I DO SEE MY DOCTORS TWICE A YEAR AND HAVE MY MRI AT LEAST ONCE A YEAR.MY LAST ONE SHOWED A ACTIVE LEGION.THE FIRST IN AT LEAST 10+YEARS. I HAVE VERY SMALL CHANGES EVERY YEAR.(NOT FOR THE BETTER). ARE WE RIGHT OR WRONG I DON'T KNOW. I KNOW THAT I AM STRONG BELIEVER OF OUR MEDS.THEN THERE IS MY VIEW! I JUST KNOW THAT I AM VERY FORTUNATE TO BE AND ABLE TO BE. I HAVE A STRONG BACK GROUND WITH MY MOM WITH MS. SO I'VE BEEN THERE DONE THAT WHEN I WAS 9. TO ALL THAT DO AND TO ALL THAT DON'T STAY WELL! MARC (BAGELMON)

marlea said...

Hi Stuart,

I would like to become a member of your blog and post.
I too stopped my Rebif, in January. I fell Christmas day at my sisters, and broke my arm, because I tripped. (again!!!)
I had only had one glass of wine too LOL……..
Anyway I had to stop the rebif because my hand was too sore to manipulate the shots with a cast on, and I felt instantly better….I had been having severe!!!!joint pains and pain behind my right knee and depression! I also had been having these lumps and bumps that would come up out of nowhere, underneath my arm and behind my knee, they would be painful and stay for awhile and then just disappear. My regular GP thought I was losing my mind!!! I also like you experienced the burst of energy, and also like you things are starting to get back to the way they were, BUT I never did get better with the interferon so I have to face my neurologist this month and tell him all of this , I also too am looking at repeating my MRI so it will be interesting. My neuro is a nice man and very understanding and likes to discuss…I was an ER nurse for 25 years.
I still am not having the joint pains and my depression has lifted and I have also reduced my depression meds…I have been very bad!
I also wanted to tell you how valuable your site is and how much comfort it has given me for the last few years, I read it more than any other….your work is valuable!!
Take Care Stuart and no guilt about your decisions…..we are barging thru the forest looking for that clearing!!!!!!
Marlea in Canada (the cold country)

maryemcl@hotmail.com said...

Thank you Stu! That's wonderful that you shared your hiatus story.

I had been on interferons for years, the last one Rebif, which my neuro took me off in Jan. of 2006 because my white blood cell count (which had long been quite low while on interferons) dropped dangerously low. I subsequently felt GREAT!!! The Rebif had made me feel horrible, but I didn't realize just how horrible until I stopped taking it. I was in no rush to start another medication.

My finger strength/dexterity/coordination was almost lost around August of 2006. That prompted me to agree to try Copaxone. Injection reactions were pretty nasty, but the biggest problem was that my blood pressure shot way up (200/100 range) and couldn't be controlled adequately with medication. I had to switch neurologists in order to make the switch to Tysabri. Since getting Tysabri (since August 2007) my fingers/hands have improved enough so that I can type (slowly), and my blood pressure has dropped (slowly) back to normal.
Tysabri has been a lifesaver.
Those interferons can be so dreadfully rough on one's body and diminish quality of life -- for many people, but not for all. Best wishes to you, and good luck!
--Mary

SwampAngel65 said...

Hey Stu,

Thanks for sharing. I never thought about how quickly a relapse could occur once off the meds. Wow! I've been shooting up daily for only 2 years so far, but made the decision right away that no matter what kind of lumps and bumps I get on my skin, the alternative could be far worse. I'm not vain. Give me the bumps and let me walk, that's all I'll say!

Guess our cool weather is gone now...Actually turned my A/C on for the first time in about 4 months (can you bleieve that?) Oh, those lower FPL bills were great while they lasted!

Bubbie said...

Hi Stu,
Thanks for sharing.
I have been on shot hiatus for 5 months now. After years of copaxone and many relapses I was told I needed interferons. Interferons were horrible...high fevers, headaches, pains worse than my normal ms pains, aches...I had maybe 2 good days out of 7. Than fevers hit 103 regularly...I gave it a good try. I WAS a compliant patient. So no more interferons. I don't want Novantrone (I'm feeling very well now) and won't consider Tysabri. I have been active, reclaimed parts of my life that were in hiding for so long. I have been asked to restart copaxone, but don't see at this point...why? They said it wasn't helping before. So while I'm good and my MRI's are clear from new spots and the weather here in Florida has not been scorching yet..I'll continue to enjoy my drugless vacation. I might post about it. Thanks.

Stuart said...

Who is Bubbie?

Stuart said...

For all in the South Florida Market, new to knowing me, please send an email to me. - thank you.
And Thank you for your comments.

Eric said...

Stu, this is your brother Eric and although I can't agree with your attempt to take yourself off the medications I do understand. For everyone's sake, please don't do that again. You know how much they are helping and you should not waver in that knowledge. Best wishes and love from Debbie, Evan, Ryan, Tori and myself.

Diane J Standiford said...

How is Teri Garr doing? Any news?

Paul Mann said...

Stu,
I understand depression. I stopped injections for a couple of weeks, but chickened out for the fear of what you went through. It seems strange that I didn't notice any difference in exacerbations or symptoms. After reading other blogs, I want to talk to my neuro doctor about Tsybari. I'm not sure that Avonex is the cause of my depression. I believe that MS and the affect it has on my life is the cause but I didn't notice depression until recently ( Past 1-2 years). Thank you for telling your story. I have been on Avonex since 1999. Paul

Anonymous said...

Hi Stu,

Thanks for all that you do.

I have been on Rebif for 4 years. A trick I learned from a nurse is: rub aloe vera gel on the injection site for 2 minutes after the shot. I have been doing this for 2 years - my injection site issues have gone from 80% of shots to less than 5%. It sounds too good to be true but it works for me! Good luck.

Anonymous said...

Hi Stuart. I had to move out of the state after Wilma destroyed my humble little home. But being a native Floridian, and the cold making my pain so extreme, I have enough money to come back to Hollywood after I sell this condo, here in Charleston SC. I was Dx in 2000, but had lesions in 1994, after a rear end collision that killed me, came back to 4 years of extreme pain, was told i had lesions in 1995, a bout of paralysis on my left side in 2000 showed the same lesions, and hence the Dx. I was so depressed and scared and alone, I wanted to die. For 8 months i cried. Two bouts of steroids, a horrendous vertigo episode and a lot of faith brought me out of the depression and back to my positive self. I just figured, if i become totally incapacitated I will refuse treatment and die. That seems to work for me. I have been on Avonex since 2000. I am so miserable with it, want to stop all meds, i feel trapped and like a slave to a medicine, which is against my beliefs as i am holistic. But I keep going. But i have been seriously considering stopping and just letting life do whatever. AFter reading your confession, I want to tell you that changed my mind, no matter how miserable I am with the meds. The thyroid disease and Hashimoto and cysts, and low thyroid, the fatty liver which might be Autoimmune cihrrosis,the migraines, constant pain, muscle, joint and nerve, the fatigue, wt gain, elevaged Bp at times, heart irregularities, and diabetes II, i will just continue because if the MS does not get me the Interferon will. so the lesser of the two evils? Who knows. I am just out of energy to think about it all. But I am so glad I read your message. Thank you. Back to sticking myself.

Anonymous said...

Stuart,

This is crazy...please do not do this again - you ate not a doctor - this is very serious!!

Susan said...

Hi Stuart,
I'm so sorry to have read about the difficult time you have had and appreciate your candidness to help inform others.
I wanted to address the vertigo issue since many people do experience it and don't know what to do for relief. It can be a very scary thing. I apologize in advance for the wordiness of this blog!
Several years ago I had a terrible attack; I was so scared and didn’t know what to do. I was sent to an audiologist by my neurologist for testing. First I had several visual tests and I didn’t have too much difficulty with them. Then she needed to do some tests that required me to lie down and move my head a certain way. Well, as soon as I got on my back and she turned my head, I FLEW off the table! No way was I able to tolerate it and no way was I going to try again!
I learned there are several types of vertigo due to several reasons. I also learned about some techniques that helped me and I wanted to share them.
My massage therapist specializes in craniosacral therapy which helped me initially with my vertigo. Now it's been years since my big vertigo attack and if I start to get signs of it, I get a treatment and it totally prevents it from coming on. I wish I could explain what craniosacral therapy is but I really can't! All I know is that it has to do with putting the body in proper alignment for necessary flow of cerebral spinal fluid and the alignment includes the cranial (head) bones.
I also learned an exercise that helps with it (depends on the type of verigo you have) from the audiologist for my particular situation. It has to do with positioning the head in certain angles and ideally should be started with a therapist if possible for safety.
It's called the Epley maneuver. You sit on the bed, with eyes open and head turned 45 degrees to the right. Another person supports your head and you lie back quickly from a sitting to supine position (on your back), ending with the head hanging 20 degrees off the end of the bed. The other person turns your head 90 degrees to the left side. You remain in this position for 30 seconds or as long as you can tolerate it. The other person turns your head an additional 90 degrees to the left while you rotate your body 90 degrees in the same direction. You remain in this position for 30 seconds or as long as you can tolerate it. Then you sit up on the left side of the bed. It can be repeated on either side until you experience relief of symptoms. You can look it up online and they will show you pictures as well as other wording for it.
I’ll be sending you some information for your website on vertigo. As an occupational therapist I treated people who suffered from vertigo and addressed issues regarding balance, awareness of environment and safety. Experiencing it and treating people with it enables me to give the information and perspective from both views.
I hope you are feeling better. I’m here if you need anything.
Susan

Robin said...

Stuart,
This is Robin Reed, I never knew any of this that was happening to you. By the way, I did not see you at the MS Walk on Sunday. Anyway, I did stop taking my Copaxone back in August and like you I feel fine, no symptoms at all. In fact I feel better than I did before with the meds. I am scared after reading your story but on the flip side I am being followed by Dr. Steingo and I just had one of my three MRI's yesterday ( I am a chicken and highly clostrophobic) I am doing the other tow on Friday. I will see how I am doing and my doctor and I will decide which way to go. He was okay with my decision only because I never had a relapse in five years. I will keep you posted.

Anonymous said...

Stu, interesting article. You should see what it's like to have Primary Pregressive MS. There is never a break...it only gets worse, and on top of that NO DRUGS to help out with the MS.
FOLLOW THE MONEY.

Find the cause/find the cure

spiff

Anonymous said...

Stu, I proceeded to do the same as you recently did. Yes, I also hate these shots, but I force myself every day to continue. Steroids are bad for your body so it is best to avoid an exaserbation. Oh this glatiramer acetate injection awaits me....

Maureen

Anonymous said...

I just stopped Rebif and have a month before I can start tysabri. I dread getting another excarbation. Two weeks ago was #9 in the 1 year one month I have been diagnosed.

I hate the welts too. I look forward to a bathing suit summer maybe.

Anonymous said...

Stu,
I went off of avonex over 3 year ago right after they changed it to prefilled/mixed form. I got sick and tired of always feeling sick and tired. After a few weeks off of the injections, like you,i was thinking clearly, had more energy and since i also have Fibromyalgia, my painful joins and muscles went away. I tried copaxone but had horrible skin reactions as well as every injection setting off spasms. I'm completely medication free for a few years now and working again. Obviously i'm in remission. But unless i progress or have a worsening of symptoms i'm staying med. free. For me the quality of life was terrible on the meds. I'm so much happier, healthier, and more active off of all of the meds. For me the treatment was worse than the disease.

Anonymous said...

I had the vertigo, loss of speech, loss of walking, loss of sight, loss of holding a pen, loss of hearing ALL on these so-called MS therapies. Changing from Copaxone to Avonex to ...

I quit the money-hungry tyrants' drugs to try LDN and a healthy diet. Haven't had a relapse since! Been 3 yrs.

Anonymous said...

I have a little different story. I am dependent not on an MS drug but on the Swank MS diet. I have been on it 22 years, and Dr. Swank was one of my early MS doctors. From time to time I've gotten off the diet, and I PAY quickly if I do that. I react in 12 to 24 hours from ingesting too much saturated fat, and my "too much" is not a whole lot. My reactions are not as overpowering as yours, Stu, but they are obvious. I lose balance and start staggering and I do the MS meander (description of my walk by a therapist who was treating my Vertigo). I may get blurry vision if this is bad enough; at one time I had Optic Neuritis, but I got completely over it, yet later I had two episodes of blindness and other episodes of brief near-blindness. Usually my eyes are very good, in fact better than when I was younger and was not on the Swank; I should have been on the Swank from my first symptoms at 17.

I have another disease, Porphyria, which makes me react worse than average to some drugs (not all. So I am blessed to have found something which helps me. I too do PT at home daily.

God bless you.

Mariel

Stuart said...

Stuart Says:

My Thanks to all, who have been leaving comments concerning this matter that needs to be circulated and re-circulated time and time again... Reason, there are always new people to read it and there are always those, who consider either not taking an MS medication or those who want to do, as I did and take that medication vacation.

There were follow-up to the original story found here. Each can be found by doing a blog search (using the box in the top left corner of the blog) for "Medication Vacation" ..

It is vital for all to chat with your medical doctor before making any changes to medication dosage.

I hope, that if you know somebody considering a medication vacation for any chronic condition, that you inform them of this blog posting.
----------------
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If you have any questions, suggestions or comments, please write to me at: stuart@msviewsandnews.org

Best Regards,

Stuart

Josie said...

I have been on all 3 drugs, copaxone, avonex, rebif. Copaxone is the only one I can tolerate at all but quit taking about 3 weeks ago. I just can not force myself to continue the shots, I have no place to inject that does not hurt, I have been on one or the other drugs since 1996.I am enjoying not doing the shots and don't feel bad, in fact I feel better then I have in years. I am self medicating with a "natural", which both my MS and pain doc have suggested as otherwise I am unable to maintain a healthy weight. My pain doc says that a medicine should make you feel better and if it is screwing with your quality of life (fear of the shot)with no noticeable benefits, maybe you don't need it. My pain doc is a respected doctor, not a quack, who thinks the MS drugs are over priced and over rated. He maintains that not one of his MS patients can show that the drugs are helping them and we mostly take them out of fear. I am not sure what I am going to do long term.

Stuart said...

Josie,
Here's how to tell if the meds are working.. So long as you have not stretched to the next stage, called Secondary progressive MS.

Provide me please, with an email address to contact you.

Stuart

Anonymous said...

Hi Cherie,

I have had 27 infusions of Tysabri. It has become my MS med of choice; after Avonex, Rebif, and.... I just sit back, get my infusion, enjoy breakfast and read or watch a dvd.

Never give up fighting your war against MS. Feel free to drop an email at jjendusa@wi.rr.com

Best,

Joe

Anonymous said...

Newtutor said...

Stu,
I sent the description of your Hiatus to my husband and he said, "This is great, someone who has learned what should be done, and he's not me". I am about to go on a vacation for 7 days and the thought of taking my interferon with me was not what I wanted to do. My husband is the one who gives me the shots, and does not want me to miss anything. I see now, I'll be following your advice and maybe looking into what tysabri is all about. It doesn't have a clean name for therapy for me. Thanks for the update.
Diagnosed May, 1995

October 14, 2009 9:14 PM

Stuart said...

Newtutuor
I wished you had left an email address or a way to contact you.
Your husband is not looking-out for what is best for you, if he still wants to delay your MS therapy.

Do what YOU know is best.

If you have questions, write to me at: stuart@msviewsandnews.org

Best,

Stuart

Michelle said...

Thanks for posting this! I went off my Avonex for about 6 months after I got a treatment for MS. I was feeling so great I didnt think I needed my med. I recently had the worst exacerbation and it interfered with an event I had looked forward to for months. I am still bouncing back from not taking my med. I learned how vital it is to take your disease modifyer and I hope everyone will continue with theirs. I was stupid and did it to myself. Hopefully others can learn from my mistake.

Jan. said...

Stuart,

I am so glad you re-issued this story because i didn't see it before.

I have to say that I have had a different experience in my 20 years with MS. I have never taken the interferon based or immune supressant based therapies...none of them. Part of the reason for that is that for many years after i was diagnosed they were not available yet and i learned different ways to cope at that point. Another reason as they became available was because none of them made sense to me, it didn't seem right to do damage to an otherwise healthy rest of my body to deal with the symptoms of MS.

For the first 16 years of my MS, I had RRMS, now it is SPMS. I have also have always had the buzzing feeling in my arms and legs, and some spasms and stiffness, too..i use CNS depressant Robaxin off-label for that (it is most commonly used as a muscle relaxer). I, of course, have had the fatigue and imbalance and vertigo and uncoordination and all that to different degrees at different times. I have used physical therapy and rest and ibuprofen and waiting-it-out for those things. Above all, I use my own drive to do what has to be done anyway to get through the bad periods. By whatever means worked for me, i only had one major relapse in those 16 years and it remitted in about 2 weeks. Most of that time, i had minor fatigues and tingling, some heat intolerance, the little things that don't slow me down much.

I know everyone is different, and in fact, I am different today with SPMS than i was with RRMS. But i at this point, I am very healthy in every respect but for the MS and i have observed that most other MS patients i come in contact with in person or online have a lot more complaints/problems than i do after 20 years of this. From this observation i conclude that a healthy body is serving me well in dealing with the MS. I am not sorry that i never took the drugs at all. I don't see that i am at a place any worse with my MS for not having took the modifying drugs all that time.

So my questions are these...do those drugs really improve a person's function and health in the long run and isthe problem you had getting off of them really a rebound issue? (kinda like when you take decongestant/antihistamines for too long and your symptoms are worse when you get off?) And i wonder if the exascerbation experienced when a person gets off would calm down with a little time.

I don't know if anyone knows the answer and maybe the answer is different for each one of us, just as our disease is different for each one of us. My neurologist has no problem with the route i have taken and all my doctors comment favorably on how well i've maintained general health, better than most people my age with or without MS!

I just wanted to interject my experience into the picture because it is so different from most i read and hear about....and i do think it is a route worth considering for RRMS cases where rapid progression is not an issue.

I hope that my experience is worth hearing in this context, even though it is very different.

I wish you the best Stuart, the path that works and feels best to you.

Jan.
http://walkwithabigstick.wordpress.com/

Joe Jendusa said...

Jan,

You are a courageous MSer, to live a healthy life without the ABCR drugs. Keep living your life to the fullest!

Joe

Cherie said...

Jan,
I went for more than 20 years with no meds before I became SPMS. I was healthy except for the MS but that was making walking and thinking and life in general more difficult. Two years on monthly IV steroids and Avonex slowed things a bit but the steroids caused many long term health issues to surface.

I went on Rebif from Avonex and literally went from scooter to walking without even a cane in the space of about 6 months. I went from legally blind (multiple optic neuritis events) to nearly clear visual field testing in just under a year. And I used Rebif without problems for 6 years.

Then, in January of this year, I was taken off the Rebif to try and heal a long term infection. Within three months, I was in my first major relapse since 2003! And it only got worse over the next three months.

I am now on a Gram of Cytoxan IV weekly and have peeled back most of the symptoms of relapse but there is still some residual sight damage.

It sounds to me like you have a very mild case of MS. In fact, many people that I speak with who have had MS more than 20 years and are in good health notice the MS is affecting them but feel otherwise well so that statement is not out of line at all.

I do not think "rebound" causes the relapses although the theory does make sense. The reason I don't think that is true is that our bodies produce beta interferons anyway and even when the supplemental med is reduced or taken away, the body is still making it in response to inflammation.

Julie said...

Julie (Australia)
Hi Stu,
I have just joined this group as I am about to start Tysabri on 7th Jan 2010....I was diagnosed in 1998 when I had optic neuritis but had had other symptoms since 1985 which I 'ignored'. When you lose your sight it is hard to fake it! I was started on Interferon and had really bad side effects...I wanted to suicide! No idea why...loving husband, great kids, great boss no problems at all...just wanted to kill myself! Told my Doctor and he punched a few keys on his computer and said that Interferon has suicide as a side effect! My comment was that it is a pretty dramatic side effect and maybe people should be cautioned when interferon is prescribed...so neurologist changed me to copaxone...and I am only just off it 3 weeks ago in the lead up to starting Tysabri...I have had brief hiatuses...(is that a word?) on copaxone and have had exacerbations and then my favourite (NOT!) steroids! I learnt the hard way as you did...don't play around with the drugs...I have tried the alternative stuff...even considered the bee stings for a minute or two but I am not a doctor or neurologist and I am going to stick with their advice from now on...for my own good...
Thanks for your blog and info...it is most appreciated! I'll be joining you on your tysabri journey...and before I read your blog...I was petrified..Good luck! Julie

Anonymous said...

Julie,

Keep fighting your MS battle using Tysabri. I received my 33rd infusion on Tysabri several weeks ago. Tysabri kicked me out of living in a wheel chair for four years. Life with Tysabri is better. I've ridden my bike over 30 miles before noon and have returned to a better life.

Best,

Joe

Stuart said...

Is this Joe from Wisconsin, Michigan or somewhere up there?

chris said...

Stu,
I'm just now reading your hiatus posts. Wow funny commentary but not so funny resulting reactions. Why didn't you tell your Doc and just go with your quest? I know he woldn't be happy but it's what you wanted!

Anyway I have been on Tysabri for 2years of monthly infusion number 27was stalled because my Doc wants me to switch to an every other month schedule for awhile.

I think this is because the rise in PML cases (1 >1000) at this point. Generally effects patients who have had 24+ infusions.
Also due to the fact that long term Tysabri usage data is just starting to be collected as "clinical data" so experiments are the only option for Docs who just "don't really know". I'm happy to contribute to this much needed data poll.
I was scheduled for next week 27th infusion but we'll wait until next month for that. Tysabri is a pretty potent drug and stays in your system for 4 months. So that is the window in which to experiment.
Tysabri has been great for me. No excerbations in 2 years and no real side effects. I trust my Doc and am willing to go along with his suggestion to take a "med holiday". We'll see...

Stuart said...

Chris - this post that I have here is not recent. It's from just over two years ago, but needs to be mentioned often to any patient with any chronic illness who considers a medication vacation.

It's a learning tool.

To know my doctors and how they feel of me and what I do for the MS community, is enough reason to hide certain things from them. LIKE a child, not wanting his parents to learn of something he knew he was doing wrong, but does it anyway.....

Regardless, that was then, and now we must live in the moment...

A medication holiday from Tysabri is probably a must for you and many others. I too am now using Tysabri and doing well. I am not looking forward to the day, when i know I too will have to stop it's use... Meanwhile though, I tested Antibody negative which is a good thing (they say) for a lesser risk of Tysabri...

Have a great day, night or whatever, depending on where you are, when you are reading this...

Stuart

Joe Jendusa said...

Hey Stu and everyone,

I had 34 infusions of Tysabri. My neurologist "gave me" a three month hiatis from Tysabri. Subsequently I have received 3 infusions of Tysabri and have scheduled the next infusion for next week.

Tysabri is the best MS modifying med for me. Without it, I would still be living life in a wheelchair.

Best,

Joe Jendusa

Anonymous said...

There is definately a great deal to learn about this issue.
I love all of the points you made.

Here is my website; www.parkingsensorsessex.co.uk

Ellen Lerner said...

Hi Stu, I have been following you for years as you may remember and still do follow you. I found this article which I know was about eight years ago because my daughter told me just this past weekend when I saw her that after 13 years of being on Avonex her MRIs were so good and her stability was so good that her doctor took her off her medications and will have MRIs every six months. So I wanted to know more about this because I have been on Copaxone for 10 years and I would say my disease has always been rather mild except for the initial event that caused me to get diagnosed-transverse myelitis. I have not had an MRI since my diagnosis 10 years ago I think the reason being is that because I'm doing so well and because there is often no correlation between having lesions show o MRI and actual symptoms my neurologist felt medication was working and there was no reason for an MRI. I know that most neurologists would not agree with this point of view. My initial MRI had a number of lesions (I don't know how many) and none of them were lit up. I kind of agree with that decision although I imagine he will recommend I have an MRI one of these years. Maybe this year?! Other than some skin atrophy on my thighs, have not had major problems with Copaxone although lately I think it's been more painful to inject. I don't know that I have any major symptoms related to MS. Maybe a couple but it's hard to say whether it MS or aging (like OAB- which I've had for more years and I've had MS.)I am now 68 years old so I have thought maybe it would not hurt for me to stop medication at some point, and I will mention it at my next appointment. Your situation is kind of scary to me however. And I'm not sure it's worth taking the risk even though I never had any of those symptoms that you had. I do have some cognitive issues like being unable to memorize music anymore or forgetting peoples names and telephone numbers but then so does my husband who is older than I am and has a couple of those issues as well as a lot of other people I know Who are my age or older and they do not have MS. I assume you are still on medication? Would you ever consider coming off again? I would like to consider an oral medication but Copaxone is the only that doesn't require blood test monitoring and does not have flulike symptoms which I would prefer not to have. I suppose I'll find out when I do have an MRI as to whether I have the same inactive reasons that I have or whether I have some I didn't know about. Even then it may not be a reason to change medications as long as I am walking and doing OK

Stuart said...

I am amazed that people still remember when I did this stupid thing - taking a medication vacation.....

The bottom line still is, that I would never again do this as the price is too high to pay, when the body worsens..

By The way - Your daughter's doctor is stupid too -- As a doctor he should know better than to take your daughter off the ms medication because she is doing well..
Yes, Stupid - as this person should know that the reason she is doing well, is Because SHE IS using an MS medication.........
I am so miffed right now at this person's stupidity -- Just for doing this your Daughter definitely needs to find a new Neurologist and she should only be seeing an MS Neurologist...

Yes, if she was showing or if she was diagnosed with definite MS, then YES -- HECK YES,, she should be on an MS therapy...

Without the treatment she was using, she could worsen again and this could cause new damages that when re-detected, might cause her to worsen again - and for what reason??



Unknown said...

I have MS and no symptoms of the disease. I am a unicorn that my neurologist is studying. I decided to take a break from meds as I has influenza A and trying to get my body to fight it off and it can't do that effectively when I am on medication. I figured my body needs a break as I have been on the same medication for almost 3yrs. Influenza A is nasty business and was just as bad as when I had it 3yrs ago. I went off medication back then and contacted my neurologist and he wanted me to stay on and I decided no I am coming off. I will go back on meds I think not sure as of yet.