tag:blogger.com,1999:blog-8010368813638032407.post7417152519096683823..comments2023-10-08T06:22:08.767-04:00Comments on MS Views and News: My Hiatus from my MS Medication - The Pros and Cons - a valuable lesson learned....Stuart http://www.blogger.com/profile/14853421273383452873noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-8010368813638032407.post-25770591042582979372010-06-06T20:33:00.838-04:002010-06-06T20:33:00.838-04:00Hey Stu and everyone,
I had 34 infusions of Tysab...Hey Stu and everyone,<br /><br />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.<br /><br />Tysabri is the best MS modifying med for me. Without it, I would still be living life in a wheelchair.<br /><br />Best,<br /><br />Joe JendusaJoe Jendusanoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-410018163675502292010-06-06T19:56:21.068-04:002010-06-06T19:56:21.068-04:00Chris - this post that I have here is not recent. ...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.<br /><br />It's a learning tool.<br /><br />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.....<br /><br />Regardless, that was then, and now we must live in the moment...<br /><br />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...<br /><br />Have a great day, night or whatever, depending on where you are, when you are reading this...<br /><br />StuartStuart https://www.blogger.com/profile/14853421273383452873noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-64792137213162449822010-06-06T12:34:02.412-04:002010-06-06T12:34:02.412-04:00Stu,
I'm just now reading your hiatus posts. W...Stu,<br />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!<br /><br />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. <br /><br />I think this is because the rise in PML cases (1 >1000) at this point. Generally effects patients who have had 24+ infusions.<br />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.<br />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.<br />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...MS Insurance Nightmarehttps://www.blogger.com/profile/14855807105182829317noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-54743723018179166392009-12-19T16:17:08.078-05:002009-12-19T16:17:08.078-05:00Is this Joe from Wisconsin, Michigan or somewhere ...Is this Joe from Wisconsin, Michigan or somewhere up there?Stuart https://www.blogger.com/profile/14853421273383452873noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-40102569603463837482009-12-19T12:36:17.799-05:002009-12-19T12:36:17.799-05:00Julie,
Keep fighting your MS battle using Tysabri...Julie,<br /><br />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.<br /><br />Best,<br /><br />JoeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-25409308952162627552009-12-18T15:51:37.210-05:002009-12-18T15:51:37.210-05:00Julie (Australia)
Hi Stu,
I have just joined this ...Julie (Australia)<br />Hi Stu,<br />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...<br />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! JulieUnknownhttps://www.blogger.com/profile/01762396127961768879noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-1859893666150309132009-10-17T19:54:25.918-04:002009-10-17T19:54:25.918-04:00Jan,
I went for more than 20 years with no meds be...Jan,<br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.<br /><br />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.Cheriehttps://www.blogger.com/profile/05708942287141868467noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-7685364257462576322009-10-17T18:47:35.632-04:002009-10-17T18:47:35.632-04:00Jan,
You are a courageous MSer, to live a healthy...Jan,<br /><br />You are a courageous MSer, to live a healthy life without the ABCR drugs. Keep living your life to the fullest!<br /><br />JoeJoe Jendusanoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-80287758701105652182009-10-17T14:23:15.394-04:002009-10-17T14:23:15.394-04:00Stuart,
I am so glad you re-issued this story bec...Stuart,<br /><br />I am so glad you re-issued this story because i didn't see it before.<br /><br />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.<br /><br />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.<br /><br />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. <br /><br />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.<br /><br />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! <br /><br />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.<br /><br />I hope that my experience is worth hearing in this context, even though it is very different.<br /><br />I wish you the best Stuart, the path that works and feels best to you.<br /><br />Jan.<br />http://walkwithabigstick.wordpress.com/Jan.http://walkwithabigstick.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-39168121320380880352009-10-15T12:37:26.562-04:002009-10-15T12:37:26.562-04:00Thanks for posting this! I went off my Avonex for ...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.Michellenoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-77920913265821030712009-10-15T08:06:19.686-04:002009-10-15T08:06:19.686-04:00Newtutuor
I wished you had left an email address o...Newtutuor<br />I wished you had left an email address or a way to contact you.<br />Your husband is not looking-out for what is best for you, if he still wants to delay your MS therapy.<br /><br />Do what YOU know is best.<br /><br />If you have questions, write to me at: <a rel="nofollow">stuart@msviewsandnews.org</a> <br /><br />Best,<br /><br />StuartStuart https://www.blogger.com/profile/14853421273383452873noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-72011052803614078042009-10-14T21:17:48.776-04:002009-10-14T21:17:48.776-04:00Newtutor said...
Stu,
I sent the descript...Newtutor said...<br /><br /> Stu,<br /> 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.<br /> Diagnosed May, 1995<br /><br /> October 14, 2009 9:14 PMAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-73377543303188683822009-07-26T17:44:18.048-04:002009-07-26T17:44:18.048-04:00Hi Cherie,
I have had 27 infusions of Tysabri. I...Hi Cherie,<br /><br />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.<br /><br />Never give up fighting your war against MS. Feel free to drop an email at jjendusa@wi.rr.com<br /><br />Best,<br /><br />JoeAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-87818988462670950022009-07-26T17:09:44.602-04:002009-07-26T17:09:44.602-04:00Josie,
Here's how to tell if the meds are work...Josie,<br />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.<br /><br />Provide me please, with an email address to contact you.<br /><br />StuartStuartnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-3523837512747579532009-07-26T17:03:59.945-04:002009-07-26T17:03:59.945-04:00I have been on all 3 drugs, copaxone, avonex, rebi...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.Josiehttps://www.blogger.com/profile/01149228571176076604noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-75070751071074763062009-07-20T08:51:35.595-04:002009-07-20T08:51:35.595-04:00Stuart Says:
My Thanks to all, who have been leav...Stuart Says:<br /><br />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.<br /><br />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" ..<br /><br />It is vital for all to chat with your medical doctor before making any changes to medication dosage.<br /><br />I hope, that if you know somebody considering a medication vacation for <i>any chronic condition</i>, that you inform them of this blog posting.<br />----------------<br />If not yet signed up at our Facebook Become a Fan Page, please click here:<a rel="nofollow">http://www.facebook.com/pages/MS-Views-and-News/102000411026?ref=mf</a><br /><br />And if not yet registered to receive our weekly MS related e-Newsletter, please visit our website to register: <a rel="nofollow">http://www.msviewsandnews.org</a><br /><br />If you have any questions, suggestions or comments, please write to me at: <a rel="nofollow">stuart@msviewsandnews.org</a><br /><br />Best Regards,<br /><br />StuartStuarthttp://wwwmsviewsandrelatednews.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-33110386786311674272009-07-19T23:46:42.348-04:002009-07-19T23:46:42.348-04:00I have a little different story. I am dependent n...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.<br /><br />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.<br /><br />God bless you.<br /><br />MarielAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-91395553450923082532009-07-16T23:12:43.360-04:002009-07-16T23:12:43.360-04:00I had the vertigo, loss of speech, loss of walking...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 ... <br /><br />I quit the money-hungry tyrants' drugs to try LDN and a healthy diet. Haven't had a relapse since! Been 3 yrs.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-17519623636097677872008-04-19T07:47:00.000-04:002008-04-19T07:47:00.000-04:00Stu,I went off of avonex over 3 year ago right aft...Stu,<BR/>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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-87354240420330180232008-04-18T19:43:00.000-04:002008-04-18T19:43:00.000-04:00I just stopped Rebif and have a month before I can...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. <BR/><BR/>I hate the welts too. I look forward to a bathing suit summer maybe.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-60018931434283894782008-04-18T17:09:00.000-04:002008-04-18T17:09:00.000-04:00Stu, I proceeded to do the same as you recently di...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....<BR/><BR/>MaureenAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-86425248946797715892008-04-16T17:46:00.000-04:002008-04-16T17:46:00.000-04:00Stu, interesting article. You should see what it's...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.<BR/>FOLLOW THE MONEY.<BR/> <BR/>Find the cause/find the cure<BR/><BR/>spiffAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-52942616301965033522008-04-16T16:33:00.000-04:002008-04-16T16:33:00.000-04:00Stuart,This is Robin Reed, I never knew any of thi...Stuart,<BR/>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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-38216379055906637562008-04-15T12:53:00.000-04:002008-04-15T12:53:00.000-04:00Hi Stuart,I'm so sorry to have read about the diff...Hi Stuart,<BR/>I'm so sorry to have read about the difficult time you have had and appreciate your candidness to help inform others. <BR/>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! <BR/>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!<BR/>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.<BR/>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.<BR/>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. <BR/>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. <BR/>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.<BR/>I hope you are feeling better. I’m here if you need anything.<BR/>SusanSusanhttps://www.blogger.com/profile/15779553529945835730noreply@blogger.comtag:blogger.com,1999:blog-8010368813638032407.post-70921544096339809472008-04-10T15:19:00.000-04:002008-04-10T15:19:00.000-04:00Stuart,This is crazy...please do not do this again...Stuart,<BR/><BR/>This is crazy...please do not do this again - you ate not a doctor - this is very serious!!Anonymousnoreply@blogger.com