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Friday, December 18, 2009

Stuart's First Tysabri Infusion - My MS Blog Posting

Of course there is concern (for me) of The PML, but of even greater concern is the loss of being independent or the need for a walker or wheelchair. This is what finally prompted me to say yes to Tysabri. Then having to convince my wife and informing the rest of my concerned family members.

Yesterday, the day finally arrived for my first infusion and it was a morning filled with worries. My stomach was turmoiled with the butterflies (as we say here in the USA) . was I doing the right thing? Maybe I have been mis-informed all these years. That I really don't have MS, but rather one of those mimicking diseases. What if I was mis-diagnosed? -- A Fantasy...

So many different things were going through my mind yesterday, that it didn't seem like there was enough Alprazolam to help calm me. Yet knew that I needed to drive, so could not over-do, eating these pink tablets.

When I finally arrived for my infusion, my fears had lessened and I began to actually feel calm.

I sat in the chair and would not look as the Rn poked my skin with the little needle or whatever it's actually called. I began to feel dizzy but learned that it was again just my nerves as I peeked and saw that I wasn't yet receiving the IV ... Then when I was finally attached to the IV line, I asked for a blanket that I saw nearby, be layed over my arm so that I did not have to look at this..

BIG Chicken,, YES -- !! The women in the room commented, "just like a man". Cluck-cluck...


After having seen my knee ripped open when I was 15 and having seen a benign tumor removed from the side of my leg when I was in my 20's I had enough of seeing my own,, anything.... Could look at someone else having open heart surgery (as seen on the internet) but nothing more of any medical procedure being performed on myself.. So yes,, Call me a chicken and I will just CLUCK.

Anyway, the hour went by fast as I of course had much to talk about and as long as there are those to listen, I will talk. If not people, animals would suffice... The nurse left the IV line attached for another 20 minutes (give or take) in case I had a side effect.. I felt fine and within an hour of my IV being finished, I was allowed to leave.

I was fine on my ride home, yet a few hours after I got home, I think the adrenaline from the previous 48 hours began to hit and I started feeling dopey. Groggy, dopey, drugged. - Take your pick of applicable wording.

I obviously fell asleep early last night.. Whether from the come-down of the adrenaline rush or the Alprazolam, I was finished for the day. Dang, again, another night that I missed watching programs I wanted to see on TV. I awoke once and felt like I still felt like I had been drugged..

Finally when I knew it was time for me to arise somewhere around 5:30am ( a normal time for me), I went to stand and almost keeled over... Yes, still feeling drugged. Now I wondered if it were the Tysabri ? Nobody mentioned that I might feel like this.

A few hours passed before I got onto the internet and visited my facebook page to ask others. Was told yes, they too felt groggy for a few days after their initial infusions. I called my doctors office about an hour ago and I was told that it's not the Tysabri. To go lay down for a little while. It may be my MS. I am prone to vertigo and imbalance.

Also to be known,I was off my previous medication for just over 5 weeks, maybe something was beginning to flare-up again? After all, we (many) know what happened to me, when I experimentally tried a hiatus a couple of years ago and what happened to me after just over 5 weeks of not using anything... Blah- blah- blah..

Well, I have not yet gone to lay down as I cannot do this in the mornings. Maybe in a little while, just not right now... Ok- So I do feel better that the doctor said it ( the grogginess) was not caused by the Tysabri and so, I am here now, typing this........

Okay so maybe my nerves are still acting-up on me. What to do...?
Hmm - Alaprazolam time, and then get something to eat...

I haven't had that burst of energy yet, that so many claim happen.. Maybe this will come soon...


Hey, thought you might want to see a couple of photos taken at yesterday session. Had someone snap two shots.

No comments please about the mid-line bulge. I do hope to get rid of this over the next few months and in the second photo, you will see the blanket covering my arm, keeping me from being squeamish (Cluck-cluck) .



I wasn't looking. Just pointing




Me and Rn Lisa



This the end of Update number one...


written by Stuart Schlossman - December 18, 2009

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29 comments:

Margaret said...

I am on Tysabri and I have to take Benadryl to stop from having a reaction. So I would rather be like you and not have a reaction. Glad you are giving it a try. Right now it is the only thing that has worked for me.

Good Luck.

Kasey said...

Leave it to you to make a story about getting a Tysabri infusion entertaining. I hope you get that energy surge soon, and get over the blehs that have settled on you!

Stuart said...

Thanks Kasey --

I will provide another "entertaining" update tomorrow or later, if I get THAT SURGE...

Be Well everybody

Stuart

Erin said...

Okay, so I know I said this on your facebook site.

I never understood why I felt out of my mind after my infusion. Out of my mind=HIGH. (Best way to describe it).

The first time I had my infusion, I jumped up from the chair after I was done and got dizzy. The nurse said "take it easy."

Anyways, I need to cut to the chase.

After like eight or nine infusions, I finally figured out why I felt high.

The nurse said it was common and due to the fact that my blood pressure was always lower after the infusion than when I initially came in. She literally asked me "Do you feel euphoric?"

So that's that! I know your doc said it wasn't the Tysabri, but as you've learned, this side effect seems to be common for people. But my first infusion had me high/euphoric/groggy, whatever you want to call it, the next day.

I always have my infusions on Friday at 2pm. My last one was the day after Thanksgiving---in the morning. I always come home from my infusion and literally melt in the couch and sleep like a baby. (My friend Dan has the same reaction). Anyways, the day after Thanksgiving was crazy, because I felt high/groggy/euphoric the whole day!

My next one is Christmas Eve at SEVEN in the morning. Oh boy!

Stuart said...

And I was told today from Biogen person that euphoria is common. Or feeling weak or groggy, for at least the first few infusions. yesterday I met a woman who was on her 32nd infusion and she tells me that after each, she needs to sleep.

Julie said...

Julie (Australia)
Hi Stu, I start my first tysabri on 7th Jan 2010 and was a bit apprehensive after all my reading...I will really enjoy Christmas now after reading your blog...I stopped copaxone 3-4 weeks ago in lead up to my first tysabri infusion and have been waiting to crash and burn as Copaxone has been my saviour for nearly 12 years! I'll let you know how I go...keep writing so I can follow what you are up too...
Have a wonderful Christmas everyone..
Julie

Lauren said...

Oh Stuart,

I am so glad you did not have any adverse reactions to your first infusion of Tysabri.

The feeling of "being groggy" can be a very common side effect of Tysabri. I am on my 41st Tysabri infusion (having my 42nd next week), and I still feel a little fatigued the day of and a day after my infusion, but it is much, much less than it was at the beginning of my infusions, and a very good night sleep and/or a very strong "power nap" pretty much resolves any fatigue I was previously feeling. Your fatigue, however, might have resulted from a previous "adrenaline rush" having worn off plus being a side effect.

You did not state whether or not you pretreated your Tysabri infusion with an antihistamine such as a 30 minute Benadryl drip, or taking a Claritin-D tablet a couple of hours before your infusion. Many patients have informed me that if they pretreat their infusions, any side effect they might encounter (such as fatigue) is drastically reduced..., I take a Claritin-D tablet a couple of hours before I even leave my home for my infusion. You might want to discuss pre-treatments with your doctor prior to your next infusion should your fatigue play a major role that is affecting your life.

But just think, you don't even have to think about treating your MS for another 27 days, woo hoo!

Hang in there buddy, it only gets easier..., happy holidays to you and yours -- Lauren :)

Stuart said...

Yes Lauren, I pre-treated with Claritin and Tylenol and of course the Alprazolam too.. Although probably too much Alprazolam or not enough...

Please have those that read your blog, take a look at this posting as it probably could help many who are considering this treatment.

And To Julie - thank you for writing and letting me know, that because of what I wrote has lessened some of your concerns.

Happy Holidays

Stuart

Robin said...

Hey Stu-

It's Robin (who used to live in SoFla, now SC). Glad to hear you finally took a leap of faith.

I started Tysabri the 1st time 2 years ago...when I got to the 23rd infusion, I freaked-thinking I was going to get PML, BLAH, BLAH, BLAH.

I went off beofre my July dose this year; I lost a bit of ground in a very short time. The walking was terrible, the balance worse. There was one day when I had to use the walker - I was that unsteady.

Long story short, I came to SoFla for the Retreat-spoke to loads of people , and realized I was a paranoid idiot. Got back to SC, but had to wait. Started back on the juice in September. I've already gotten back most (if not all) of what I lost, and took a 2 month vacation, which hopefully breaks up the pattern of use.

So here I am, saying glad you made it. In all the infusions I've had, there has never been anything for me to do but sleep. The one time I spent a couple of hours after the infusion with Richard(husband), I got dizzy/nauseous on the way home. Never again. Even if I just sit in bed and read, that's where I stay.

Hope that helps..
Miss you,

Love,
Robin

Sandi Eby said...

hi - i gave tysabri a good try for 18mo. i would have to drive 2hrs each way to bozeman, mt to get the infusion.

i would always say the infusion was a "non-event". 'cuz it was only sitting in the cancer treatment center for 2 hours with the drug going in & being watched for reactioin.

of course i thot i saw improvements in various things -like improvement in the babinskis reflex (where your toes go all weird when you run something on the bottom of your feet). i thot i had more energy (getting to have lunch with an ex-boyfriend who is still one of my favorite-est people in the whole world. plus shopping in the "big city" of bozeman might have contributed to my positive feelings.)

when i saw that the infusion was costing a whopping $74,000 for the 18mo - and really do no more than prevent any more exacerbations (which Jesus had taken care of 25yrs ago) i decided to quit the tysabri (1st ddrug i have ever tried for the disease) and put my energy/resources towards adult stem cells. i go to athens for placement of my cells on jan 12th -
hopefully this will cause some remyelination of the scars! hope the tysabri does everybody some good:) - Sandi

Stuart said...

For Julie in Australia and all else

If not yet receiving my weekly ms related e-newsletter, please visit my website and on the left side of the page is a link that reads Register for e-newsletter. Click and take the less than 30 seconds to complete the registration form.
The website is: http://www.msviewsandnews.org

Regards,

Stuart

Anna said...

I was your Tysabri buddy in the chair to your right, the arm you could look at:) That was my 11th time. I took lorazapam before the 1st 6 txs, kept the blanket on me even if it wasen't freezing (Buppie) and became very anxious before, during and after. I think I am just now starting to get the hang of it. So you did very well for the 1st time! Good luck with your txs and with your symptoms, I will be rooting for you. I have signed up on your site now. It looks very nice. Saw the Dr. today,asked about the Zamboni info. He will entertain our requests for further scans, if he can and if we are in a reputable study, please let us know anything you hear. I am excited about this one! Again, Thank you so much for all your hard work.

Julie said...

I honestly don't know how you can afford to have MS in the US...in Australia all my tysabri is done free through our local hospital...I know we are very fortunate...
Julie

Stuart said...

Hi Anna - Thanks for responding.
Please use this link to register:
http://www.gloopler.com/msviewsandrelatednews/index.php?option=com_comprofiler&task=registers&Itemid=70, because whatever you did to register, did not go thru.

And for whomever else needing to register at my website (MS Views and News), also to please use the above link.

Best,
Stuart

Stuart said...

Hey - Bet you didn't know that your picture along with your comment, could be seen here, IF you are registered with Google

Anonymous said...

As I posted on Facebook>>>
welcome to the club, Stuaet.
T can also make you a little woozy after infusion...
Dazed and Infused.
Good title for a rock tune, huh?

Ray

Ellen said...

Stumbled across your blog through twitter. Had my first Tysabri infusion last week as treatment for Crohn's. I didn't experience anything during or immediately afterward. However, my energy is no where to be found but that could also be due to my tapering off of steroids. Anyway, your blog is awesome and I love hearing from other patients on Tysabri.

inzition said...

Thanks for this post, I blogged the week i was in Germany getting stem cells. The anxiety was much stronger before it began, after i was calm as a hindu cow :). Anyway good for you for getting it, fear of PML should not stop anyone, Tysabri is at least twice as effective as anything they have.

I am planning on getting it soon, stem cells seem to be helping but not as dramatically nor quickly as i would like.

Paula, West Jordan, UT said...

I just started my third year on Tysabri. I am in a wheelchair but I can still walk a little. I am sure if I wasn't on it I wouldn't be able to walk a all. The PML thing scars me but I try not to worry about it much. Good luck Stuart.

Gerry C. said...

Stu, my Ms Guru, I'm glad you "cluked:"your way towards the Tysabri. As you well know me and my outlook on life.I think you have chosen the correct path towards your ms. You've seen what wonders its done for me. As far as feeling "dopey" after infusions same here pal plus itching on the soles of my feet (benadryl) takes care of that. I've come along way my G. and I'd like to think you have a lot to do with the results. Keep on keeping on. Gerry C

Anonymous said...

I am changing from Rebif to Tysabri in a few wks, been off meds for 2 wks now. I'll a little worried but anything anyone can say help me out alot thanks

Stuart said...

Dear Anonymous
I too was concerned. Really concerned for the week and then the days leading up to that first infusion. And all for what? no clue as it was simple. And what made it even easier was having good conversation with others that were being infused when I arrived......

If you want, send an email to me directly and then I can answer in more detail.

Write to: stuart@msviewsandnews.org

Best Regards

Stuart

Anonymous said...

Dear Stuart, I have been on Tysabri for 8x coming from 2 years on Copaxone. That last week between infusions is a sobering look at what life could be without Tysabri. Good luck, it took a couple of months, and a course of Steroids before I really started feeling good results from it. I feel its helping, still wish there were a cure. I fear what is going to happen when I no longer have good health insurance that picks up the cost.

Shes Off Her Rocker said...

Just had my second Tysabri infusion..was diagnosed last September and Tysabri first and only treatment I've had. Can only be on it six months due to pml antibodies high ridk. However I also had brain surgery a year ago for a small tumor that had caused epilepsy..my MS dr believes was also a lesion...been a crazy two years...hope I will finally see the light at the end of the tunnel..dr said will be three to six infusions before I may notice improvement..but I have most likely had untreated MS for two years! Hope I can bounce back soon. My sister has had MS for ten years. Only thing she can tolerate is Tysabri. She has been on it since year it came out..and is doing better than ever! I am exhausted morning after..also experienced the euphoria. No bad side effects! Good luck everyone!

Stuart said...

December 18, 2009 was such a long time ago when I had that first infusion. Just two days ago, Jan 21st, 2015, I had my 65th infusion.. Yes, I have had many and will remain on this as long as I can.....
Best Regards, Stuart

Unknown said...

I start my first infusion Wednesday at 9:00am. I've been in bed since Monday. 5 days. I have this symptom called the MS hug... & I'm really weak & just wondering if this first injection will make all this go away. I've been keeping headaches too.

Stuart said...

Tysabri is not designed to make you feel better. It does not take away Symptoms.
Tysabri, like the other disease modifying therapies, are designed to keep you from getting worse. this could make you feel better if not getting worse, then you might feel well...

Emily93 said...

Ok thank you

Stuart said...

Lear more of MS and what we do to provide MS Views and News - when you are signed-up here: www.register.msviewsandnews.org -- less than 30 seconds and much to learn