Thinking of stopping Tysabri. Thoughts appreciated

tt89 · Family Member Joined: Aug 13, 2008 Posts: 97 Location: USA

Well I had my 8th infusion this month. The only positive thing to having this IV once a month is that I'm only sick a few days vs everyone on the shots other than that and overall I think I'm doing much worse than before Tysabri. Things I notice that are worse:

Legs are much more weak especially my right side which was always the problem to start. Right arm is very weak

I'm losing hand strength in a BIG way. I can barely get my clothes on, put my boots on or anything without a struggle. My hands hurt so bad from being so tight and they are very weak. I can't even open a window in my house anymore Its unreal.

I stay in pain that I really cannot describe other than its a mix of muscle pain and nerve pain but mostly in my hips/upper legs only. Question

I used to have a horrible fatigue problem and we tried Ritalin but that was worthless. Provigal made me sick but now thankfully Im on Adderall and that has really helped me beat the bad fatigue.

I'm really in the dumps about this. I was certain that after doing so terrible on the shots that I stood a better chance with the IV. I know that Tysabri is not designed to make you feel better instead to slow the progression but I'm way worse on Tysabri than before.

I also notice bad brain fog. Sometimes I drive somewhere and sit in my car for awhile because I just can't even get out of the car I feel so awful.

I'm still working ( a nurse) and it's very difficult at best but I keep going and moving for fear I will stop forever. I refuse to be on disability.

For pain they started me from day one with Lortab but I just don't want to be on narcotics for pain. So we tried some anti-inflammatory drugs such as naproxin, ketoprofen, and mobic- did nothing. THey no longer have me using baclofen and those type drugs because I do not have spascity at all. They thought I did but I do not. The muscle cramps I had were from lack of potassium. That is fixed now. Also my Vit D level is staying in the range it needs to be as I'm on 50000 iu's twice a week. I had an Iron issue and that is resolved too.

I tried the Magnisium stuff and it helped for a bit but then nothing.

Its just that my pain is worse, the weakness is worse and my thinking is just slow and it's so frustrating. I do not walk awkward at all, just slow at times and then other times I'm okay.

Also I notice something else ( and I'm not depressed) but crying at the drop of a dime. Very emotional and I have to keep that under control so much do to my job and more but when I'm alone, its awful.

I don't know if its just everything or frustration or what.

I was pretty motivated about Tysabri from all I heard and all the people at my IV center love it but I'm not sure why. I'm the one that is in the best shape in that group. They all walk with assistance of some kind.

I still go for my walks but struggle on them but nevertheless I go as much as I can. I do little workouts at home best I can. I used to drink diet soda from sun up to sun down and now I have one a day, the rest is water.

I really just am not sure where to go from here.

There has to be a better way to deal with this. The time I was off all meds for several months is when I felt the BEST but my MRI didn't say I was better, I was worse so I went on Tysabri.

Any thoughts?

Thank you Sad

lyndacarol · Family Elder Joined: Dec 23, 2005 Posts: 824

tt89--You know your body best. You seem to be functioning at a high level since you are still working. Tysabri is a BIG gun to be using already, it seems to me. You asked... here are my thoughts:

Maybe it is time to start over -- take a break from the meds; see your GP; schedule thorough testing of endocrine hormones (especially insulin, thyroid hormones, cortisol, etc.). Keep up with your walks or whatever exercising you can do. Try to follow a low-carb diet. Reducing your consumption of soda pop (whether sweetened with sugar or an artificial sweetener) is an EXCELLENT beginning.

Having emotions close to the surface (emotional lability) is familiar to most of us with MS. Your job as a nurse must be stressful and that makes it all the more difficult to control. Stress causes an increase in cortisol, the primary stress hormone, as I'm sure you know. Cortisol increases sugars (glucose) in the bloodstream; glucose in the bloodstream increases insulin secretion (which I suspect to be fundamental in MS). If you learn of techniques for stress management, please share them with all of us here -- stress is a problem to most of us in this modern world.

Best of luck.

tt89 · Family Member Joined: Aug 13, 2008 Posts: 97 Location: USA

Thanks for your response. I really appreciate it
Well I started with Betaseron and that made me sick as a dog everyday. I then went off meds for 6 mos and tried Copaxone, failed that one too....so I started Tysabri. I was diagnosed in Jan/Feb 08.
I think I will do just that get some new blood work with those specific levels checked and go from there.
Thanks so much for everything.
Do you deal with alot of pain? If so, what do you use?

lyndacarol · Family Elder Joined: Dec 23, 2005 Posts: 824

I do not describe the sensation in my feet and lower legs as pain, but it is definitely unpleasant. I do not use pain medications; I do take aspirin every day.

I was diagnosed with MS in September '92. I also used Betaseron for a few years, but switched to Avonex when it became available. Seven years on Avonex did not stop my deterioration; I tried Copaxone for a few months, but found the side effects intolerable. Since stopping Copaxone, I have not used any DMD's.

tt89 · Family Member Joined: Aug 13, 2008 Posts: 97 Location: USA

So you are not taking anything at all except OTC stuff?
I don't blame you I really don't. I feel the meds make you worse thats how I feel right now. really let down with Tysabri. I feel worse now than on the shots. I mean Im sick only a few days after the IV but the rest of the month I feel cruddy overall and on the shots I was sick everyday but off all the meds, I felt sooooooooooo much better.

Sad isn't it.

Thanks so much for your help

lyndacarol · Family Elder Joined: Dec 23, 2005 Posts: 824

Taking nothing, but aspirin and supplements like vitamins B, C, D, E, probiotics, calcium, gingko biloba, etc.

tt89 · Family Member Joined: Aug 13, 2008 Posts: 97 Location: USA

and with that regiment have your MRI's remained stable?

I saw a story of a dutch study where folks that had stopped Tysabri had some sort of rebound effect. That is the last thing I need.

dino84 · Getting to Know You... Joined: Jul 09, 2009 Posts: 15

i am truely sorry because your condition is not so great. Sad

for me tysabri...well i really dont know if its working or not, about the same time i started tysabri i cutted down working a lot and started some other drugs too so is it tysabri or not? no one knows that.
so im really thinking that i just take a break from tysabri and look if my condition goes worse, well see.

and the brain fog?

its hard to understand because english is not my language but i have these things that i drive a car and suddenly "wake up" and then i think that how did i get here? i know where im going, when i left etc, but the thing that really scares me is that sometimes i seem to "lose time" like 5 minutes in that car, i dont know what happened during that 5min?
i somehow know that im not going to cause any accident, i just know it but it really scares the s*** out of me.

is this like that brain fog??

valanhb · Family Member Joined: Feb 03, 2010 Posts: 25

tt89, I was going to just lurk for a while before considering joining, but your post made me take the plunge and join.

I am SO glad to see someone posting something even remotely similar to what I'm going through, even though I'm on a much shorter timeframe than you.

I was diagnosed June 16, 2008. Started on Rebif in August. By December I took 2 weeks off from work as a mini-disability vacation because I simply couldn't function. Doc took me off of it due to horrible increase in depression and "flu like symptoms" which is how she explained the pain and weakness. Sure enough, off Rebif I felt SO much better and the "relapse" that had been disabling me for 6 months let up.

New neuro, new treatment. Tried Copaxone. After 1 month and a trial (2 weeks off, went back on for 2 days) discovered I had an allergic reaction to it. So that pretty well knocks out the other 2 CRABs too, since they are the same interferons, just different timings/dosings.

So we go to Tysabri, which my doctors and my husband think is the greatest thing since sliced bread. I kept an open mind. Was hopeful this one would actually work. But since I had bad reactions to the CRABs, as well as a couple other drugs for various conditions, I kept a close eye on my body as well.

Here is it 6 months later, going for month 7 infusion Friday. I feel horrid. Not as bad as the others, but bad. Balance problems, fatigue beyond belief (!!), numbness in my fingers, confusion, memory problems and word finding problems, pain is worse everywhere, etc. And this is helping???

I want to stop. I really do. But they (neuro & his PA) are convinced of the rebound affect. I'm ready to take my chances. I called with the symptoms I'm having now, since they always ask about new & worsening symptoms. The nurse called back within an hour to get an appt. with me before the infusion. We'll see.

But long post short - yes, I understand! It's not just you!!! Smile

lyndacarol · Family Elder Joined: Dec 23, 2005 Posts: 824

To your question, tt89:

catfreak · Posted: Sat Feb 06, 2010 5:44 pm Post subject:

valanhb,

I just had my last infusion on Monday. Told my Dr. I just hated how I felt on the Tysabri. I am waiting for a pill to come out and I am willing to take my chances with the rebound.

Cat
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tt89 · Family Member Joined: Aug 13, 2008 Posts: 97 Location: USA

I'm sorry to get back to everyone so late. Just been feeling so cruddy and trying to sort things out and make that decision on what to do. I'm scheduled this Tuesday for another IV and I just don't know what to do right now. I just wish this was an easy decision. I've done everything I can to think it through, pray about it and just not sure right now. I just know I'm very worn out feeling this awful and I want my life back a little bit. I fear the rebound, I fear alot of things with MS and that's sad for me because I have always been so optimistic and a fighter with it but I think I'm just officially worn out. I have alway strived to go against what others said and I refuse to lay down and let MS get me by forcing myself to do alot of things I'm told I need to slow down with. I fear slowing down will make it worse. I don't know anymore. I think as I said Im worn out, I'm sort of discouraged with the way this has turned out and I know there are no cures, no miracle feel better meds for MS folks but something has just got to give....

Thanks for listening and I wish everyone well
T

valanhb · Family Member Joined: Feb 03, 2010 Posts: 25

Hey T,

Can you postpone your infusion for a week?

I had to do that last week (for other reasons, not just a choice). Should have gotten it last Friday. Weekend was typical, Monday was horrific. But I've been feeling a little bit better each day on Tuesday & Wednesday. Coincidence? It could be, I suppose. I'm going to see if this continues through the day today and into Thursday. If so, I'm going to stop the treatments. I'm just letting my body tell me what the right decision is. I know the Tysabri is still in my system "at therapudic levels" but this is the first time I've felt any kind of improvement in months.

I've been through my body rejecting the treatment twice before with Rebif and Copaxone. I feel like my body is telling me something here too. If this is the treatment, then I'd rather take my chances with the disease.

tt89 · Family Member Joined: Aug 13, 2008 Posts: 97 Location: USA

I actually did pospone it. It was to be this past Tuesday and I'm set up for this coming Monday but I really do not want to do it anymore.

I joined a gym today. I went and worked out and it was not easy but I did it and now tonight I actually feel decent. I just feel like I don't want anymore of any of the MS meds in my system. I had taken a break before and felt great but MRI was not so great. I hate this whole thing more than anyone can imagine. It's a catch 22.

What are you plans?

valanhb · Family Member Joined: Feb 03, 2010 Posts: 25

I take it that if you joined a gym you *must* be feeling better! I know that just a week ago the thought of working out made me writhe in pain. Good for you!!

I think I'm going to postpone it one more time because I happen to have a neuro('s PA) appt. on Tuesday. We're (me and my husband who is watching from the outside) going to see if the upswing lasts through the weekend. I hadn't had the Tysabri upswing since October, so I know it's not just that timing.

I feel more symptoms again today (fatigue, spasticity & MS Hug), but what is missing is the awful muscle pain in my legs and back especially. I sure don't miss it! I had brought out the cane again because it hurt so much to walk, and the pain had made it so difficult to walk. In the span of 2 days, I'm back to walking normally!!