Thinking of stopping Tysabri. Thoughts appreciated

[tt89]

Well I still feel cruddy but I'm pushing myself to work out in the gym. It's my way of getting back at MS and the docs that think I need to SLOW DOWN and so forth. I just want to do what I can to help myself.
I'm seriously considering cancelling my appt on Monday, not sure. I'm so torn about everything right now with Tysabri and so forth.
Do you use anything for pain?
Thanks for writing to me

[valanhb]

Sorry I didn't get back to you. I actually had to work some extra hours. But at the same time...I could actually work some extra hours!! I didn't have that mind-numbing fatigue!

You asked about pain control, and yeah I'm on a few prescription pain control meds. I have Cymbalta (depression & nerve pain), Tramadol (nerve pain & depression), and Tegretol (normal pain). When those aren't enough, I throw some Ibuprofen on top.

How are you doing, since it's been a couple more days??

[tt89]

Well I went ahead and had the infusion yesterday but it was the worst mistake ever. This one made me really sick which is odd. I'm just now up and about ( barely) after 24 hours. I also had a neuro check after my IV and they found considerable added weakness in my hands and other stuff which is disheartening.

Do you notice any weight gain with Cymbalta? Do you notice that works. They talked about it but I was NO WAY on that because I want no drug with weight gain side effects. I'm trying to get rid of the few last pounds I was given due to Prednisone which I refuse to ever take again.

I'm on Soma for pain ( a trial to see how it works) and so far it just knocks me out but I still hurt. The Nurse I spoke too didn't like I was on Soma for pain as she felt that did nothing for pain and was more so for muscle pain and my pain is more like nerve/bone pain. She wanted me to try neurontin with it ( which I took before short term but don't recall how well it worked).

Frustration beyond belief!! I think that was my last Tysabri infusion. Although she said going off it would not be good as I'm only 9 mos into the drug and it would cause a relapse if I got off the drug.

[valanhb]

Weight gain? Weight LOSS if anything! One of the side effects is loss of appetite, and it says clearly that Cymbalta should not be prescribed to anorexics. And BONUS - it's also indicated for nerve pain, if you have that issue. Now I'm almost scared to try anything else for depression with that added bonus of countering nerve pain. I still get nerve pain even with it...what would it be like without it?? I could be a spokesperson for Cymbalta - I absolutely love it. It has helped to mediate the depression without flatlining my moods to where I feel nothing emotionally at all (Paxil did that with me).

Today is my day to talk to my Dr. about stopping the Tysabri. I'm sure she's going to pull out all the stops to convince me that it's the wrong decision, but I just can't see that it's wrong. They've already talked about the "rebound effect" and in my research I can't find anything definitive. There was one Dutch study of 21 people that showed that after stopping Tysabri the lesion load increased. After 15 months, it was an average of 3x more than before, if it had been a short amount of time on the drug it increased to 5x more. However, there are so many variables to this! How aggressive was their disease before the Tysabri? That's the biggest one for me. They also had these 21 people in 2 groups - take it for 3 years and take it for 2 months. Quite a disparity there! And 21 people is hardly a random sampling of the many, many variables that exist within our disease.

Besides, they are totally skeptical of the CCSVI research, but believe a study of 21 people to be fact?

I don't know how bad your relapses have been, but for me I'll take my chances with a relapse. It can't possibly be worse than how I felt on Tysabri!

[tt89]

Hmm you know maybe I can try a trial of the Cymbalta. Do you take it at night? I just am so leary of meds ( ha ha and I'm a Nurse) but I don't want anymore crazy side effects. The MS drugs make me sick. Provigal for fatigue was AWFUL. I'm on Adderall for that now, low dose and it helps way better.
You are such a help to me. Thank you for everything. Seriously..I thought I was going crazy. When they asked me how I am doing now compared to when I started Tysabri I said. CRAPPY. I don't feel any different other than not being sick EVERYDAY like the shots made me feel BUT....she said I should NOT feel sick at all with MS. ...that concerns her.

Your a gem. Thanks!

[Vonna]

Hello, I am normally over at the CCSVI threads, but thought I'd stop in.

I know you are well informed about PML, but I have been doing lots of study on Biogen (Manufacturer of Tysabri). It made me sick to think of how they are doing their best to make Tysabri look better than it really is. They are really doing major underhanded stuff right now to try and stop research for the real cure for MS-The Liberation Treatment. There is no way to explain it all in this post, but for the sake of your health, go to:

http://ccsvivictory.club.officelive.com ... erest.aspx

And also:

http://ccsvivictory.club.officelive.com/Biogen.aspx

Biogen doesn't care about your health, they care about their pocketbook! They make things look better than they really are, and hide things they don't want you to know. They have no idea how dangerous Tysabri can be after the 2-3 year mark, because it has never been studied. They are just letting people stay on it to see what happens, even though 31 cases of PML, and they have had to admit the longer you are on in, the bigger your risk.

Vonna

[tt89]

Thank you Vonna. I really want to stop but now I have this fear they instilled in me that if I stop ( only being on the drug less than a year) I will be up a creek without a paddle in terms of being sicker.

Why did I ever start this.

We have a friend of a family member in TN that has MS, 20 years, no meds, just healthy living and she's doing really well. I was at my best WITHOUT meds but my MRI became worse.

Sooooooooooooo frustrating...I feel like junk on the stuff.

Thanks so much

[valanhb]

Hey T (and everyone else ;) )

Just wanted to update you on my situation. I saw my neuro('s PA, but she's primary on my case) on Tuesday. Here's what happened. (Sorry, I'm longwinded...it's in my nature!)

She always asks when we're walking in how I'm feeling. For once I could answer, "Pretty good, actually!" followed closely by "I haven't had a Tysabri infusion since January." She immediately asked once we got in the exam room if I thought it was tied to the Ty, and I answered definitely. She asked what had improved or lessened since last time we talked, and I was prepared! I had my list and read it off to her. She was impressed. I also said that the only times this dramatic of a turn around happened was when I went off of Rebif and Copaxone. And then I also said that I'm left with what I feel are my real MS symptoms, and had that list for her so it wasn't as if everything that was wrong with me suddenly got better, because it hasn't. It's just gotten manageable.

I didn't even have to pull out the big guns with the whole "treatment is worse than the disease" thing with my mother and chemo. She completely agreed that I wasn't doing well on Tysabri, and went to talk it over with Dr. Corboy. Came back and said that while they definitely don't advocate going completely off treatment, in my case they understand why that would be my choice. She gave me one other idea that they have, which is a immuno-suppressant without much documentation behind it for MS (Cellcept). She said I could research it and let her know if I want to try it, otherwise we'll just wait for the next round of oral drugs to be approved by the FDA, which probably won't be for another year.

I was quite pleasantly surprised. I figured I would really have to fight, but she said she was really happy to see me doing so well because I had been so miserable before. Glad she noticed. I'm really glad she and Dr. Corboy were both agreeable that the Tysabri was the cause of me being miserable, and it wasn't worth it to keep me on it.

Funny enough...she didn't even mention the "rebound effect". So I guess we'll see if that actually happens, since I'm supposed to be in the worst possible time frame (took it for 6 months).

[gymbuff]

Hi You Guys, I am so disheatened and discouraged to read about all the side effects you are suffering with Tysabri. I will be having infusion 30 next month and being totally honest I haven't felt better in years. When I was to start on Tysabri I had to go off all meds for a while and I had no meds for 5 months. I finished up in hospital and I couldn't even walk unassisted. As I said I feel great now. I took great hope from Vern Beachy on UTUBE with his monthly diary and I still follow his progression every 4 weeks ( he has had over 40 infusions).
Don't give up! Keep searching for the treatment that is right for you, it is out there somewhere. By the way I am diagnosed over 20 years. Keep positive and stay smiling.

[Vonna]

tt89,
They told me the same thing about Copaxone. That I would have this horrible reaction if I missed even one dose. My neuro. said that if I missed one dose, it could cause lesions!!! This is how the pharmaceutical companies "educate" the doctors, in order to keep people on their meds. I went on Copaxone, and had the worse year ever, with three relapses. Now, off Copaxone and taking an inexpensive, effective medication called LDN. I felt better once I got off Copaxone.

Please take the time to check this out, it will be worth it!

http://ccsvivictory.club.officelive.com ... tical.aspx

[valanhb]

gymbuff, I am SO glad that Tysabri works for you! I was really hoping it would work for me too.

I know that T and I are the minority in having these reactions, but the really bad part of it is that a) they don't tell you that this is even possible, just the horrors of PML (I'm sure our reaction is more common than PML!); b) they don't believe us when we tell them that we're pretty sure that this is a reaction to the drug and not MS; and c) they use scare tactics to keep us on the treatment.

Vonna, I completely believe you with the drug companies having a hand in perpetuating the idea that you can't get off treatment for any reason. I have tried Rebif and Copaxone, which are the two formulations of Interferons, and Tysabri and I'm not able to tolerate any of them. I wish I was, frankly. But even after that my doctors came back and said that while they advise against going off treatment they understand why I'm doing it. Yeah - it's either going off treatment for now or going on disability by year end. Not much of a choice in my mind!

I'm still waiting for the big backlash against CCSVI and the Liberation Treatment from the drug companies. Not sure what it will be or how they will justify it, but I'm sure it's coming.

Hey T - how are you doing?? I've been thinking of you a lot over the weekend!

[masterofpuppets101]

shift to gilenya add an antidepressant to your medication decrease your fat intake and try to excercise

[gymbuff]

I stopped Tysabri after 60+ infusions. It just didn't seem to be working anymore. I started Gilenya 15 months ago and I am having doubts about it now. Waiting fora consult with my neuro to discuss what to do next

[pballer76]

What is your jcv titer? I was on Ty for 73 months. It was the best medicine I have been on. I have been on Avonex, rebif, tysabri, tecfidera and gilenya.
Gilenya was the easiest but tysabri was the best.
I had one flair and that wasn't because the med didn't work it was because I got in a hot bath tub for too long. I couldn't stand up to get out and had to go get steroids.
What I am saying is be sure you are done with tysabri before you stop.
My neuro and MS specialist will not put me on Tysabri again. I wish I wouldn't have stopped.
Now I think they are having me give Tecfidera another try.

[Anonymoose]

What is your jcv titer? I was on Ty for 73 months. It was the best medicine I have been on. I have been on Avonex, rebif, tysabri, tecfidera and gilenya.
Gilenya was the easiest but tysabri was the best.
I had one flair and that wasn't because the med didn't work it was because I got in a hot bath tub for too long. I couldn't stand up to get out and had to go get steroids.
What I am saying is be sure you are done with tysabri before you stop.
My neuro and MS specialist will not put me on Tysabri again. I wish I wouldn't have stopped.
Now I think they are having me give Tecfidera another try.

I'm confused about the cause of your exacerbation. I thought heat could cause temporary worsening of existing symptoms and fatigue, but not an exacerbation. I've always indulged in long, hot baths and they've never caused a relapse (I've never used a dmd either). Was this early in your tysabri experience?