tysabri worsening MS?

belge · Post by **belge** » Thu Apr 24, 2008 4:01 am

Hi, it' s my first time on this forum so hi everybody! I just received my tysabri infusion a few adys ago and I had some side effects the first few days - nausea, collosal headache, loss of appetite. Now most of the side effects have disspeared however, I have a very bad reaction - I already had trouble walking for 1,5 years though since a few days it is reall worse, my lower legs pain and I have difficulties moving, walking, riding my bicycle (this helped me very much before).
I am really depressed and sad and would be very grateful if somebody could tell me if these side effects + worsening of the situation are normal and if everything gets better and when?
Ha anybody had experiences of this kind?
I would be so grateful if you could give me an opinion...

i am really scared...
veronika

superman · Post by **superman** » Thu Apr 24, 2008 1:52 pm

hi Veronika
With Ms since 1996(i was 17) , i have been on Tysa for 11 months, thanks to it i've not had any crisis for a year(compare to 4 per year for the 2 previous years). So don't lose confidence and maybe will come something like a miracle.
at the beginning for the 3 fist months i felt almost no positive effect, so be patient and i hope that you'll get some benefits.

Last word(excuse my French): tu es vraiment Belge?

belge · Post by **belge** » Fri Apr 25, 2008 1:02 am

hehe, non je ne suis pas vraiment belge mais j'ai habite en france pendant 2 ans et demi et j'ai developpe une grande sympathie pour les belges

t'es belge, superman?
Anyway, things are not getting better, maybe even worse, I try not to loose hope but it's really hard because I can hardly walk the stairs or even walk... Before tysabri it was bad but not that much. Hope I will receive some more info, thank you so much! and thanks, superman (btw, cool nickname

belge · Post by **belge** » Sun Apr 27, 2008 3:06 am

hi again!
I have just read your previous forums and have seen that actually not everyone has had effects with tysabri if I understand well. I know we all have very different reactions to drugs but do you think it is possible that tysa never works or even worsens the symptomps of MS? in this case, do you think I should stop the treatment or perseverate? do you think there are some dangers if I don't respond well and continue?
Sorry, I know nobody is a doctor though I am just interested if anyone had similar (not so good) responses and has stopped?
Anyway, I try not to loose hope though it's hard sometimes...
I hope it's sunny where you are, I am from Slovenia (Europe) and spring is finally coming

Cherie659 · Post by **Cherie659** » Sun Apr 27, 2008 12:26 pm

Hi Belge,
I just had my 1st infusion of Tysabri on 4/15 myself. My side effects have included nausea and fatigue but no worrsening of other symptoms. Have you called your doctor or infusion tech to ask about your symptoms and if they're normal? From all that I have read and heard you should not be getting worse.

belge · Post by **belge** » Sun Apr 27, 2008 10:46 pm

hey cheerie, tnx for the info! yes, actually I have been to the doctor yesterday and she made an MR and said I have very strong active lesions though a relapse

Which is kind of weird since I started taking Tysabri. She suggested 3 infusions of Corticosteroids (I hope this is the right word in English) but I am afraid how this might work as a combination. I wanted to ask - has anyone taken tysabri + corticosteroids together?
please, let me know because I have to decide today...
thanks a lot,
veronika

HarryZ · Post by **HarryZ** » Mon Apr 28, 2008 5:38 am

belge wrote:hey cheerie, tnx for the info! yes, actually I have been to the doctor yesterday and she made an MR and said I have very strong active lesions though a relapse Which is kind of weird since I started taking Tysabri. She suggested 3 infusions of Corticosteroids (I hope this is the right word in English) but I am afraid how this might work as a combination. I wanted to ask - has anyone taken tysabri + corticosteroids together?
please, let me know because I have to decide today...
thanks a lot,
veronika

Veronica,

I don't have MS but my wife did for many years. I have also followed Tysabri for a long time as well.

If you were starting to have a relapse or in the middle of a relapse when you began using Tysabri, it will not likely have any effect at all on the MS.

They did a small trial in Toronto, Canada by giving Tysabri to MS patients who were experiencing an attack. The results showed no difference at all between those patients taking the placebo or Tysabri. They determined from this trial that Tysabri had no effect with MS patients in this particular situation.

This obviously has to be discussed with your neuro but you may want to wait until the attack has subsided before deciding on whether you want to resume the Tysabri. I hope you are feeling better soon.

Harry

Cherie659 · Post by **Cherie659** » Mon Apr 28, 2008 7:02 am

Hi Veronika,

I was told that steroids and Tysabri don't mix. Your doctor must feel that Corticosteroids are okay to take otherwise he/she would not have suggested it, but I would certainly still question him/her about it. I use the higher dose (1,000 mg) Sol-u-Medrol for my relapses.

Good luck with your decisson Veronika. I hope you get to feeling better real soon. Take care.

belge · Post by **belge** » Tue Apr 29, 2008 12:25 am

hey everyone!
first of all, thanks for the answers which were a great help!
i've actually got some news. My doctor said that it's very probable that my relapse was caused by my vaccination for hepathitis - I wanted to go to India to an ayurvedic clinic therefore the vaccination (which I checked with my doctor beforehand!!!) Anyway, the doctor has now warned me against my travel so I am not going.
In between my family (mother and brother) got completely histerically crazy which didn't really help me...
However, my "walking" is really getting worse - has anyone had such bad relapses? how long did they last? It' s my first one so severe so I would just like to know what to expect although I know it differs from person to person...
I hope my tysabri injection will boost in soon, I am hoping for the best! I'll keep you posted,
veronika

Post by **NHE** » Tue Apr 29, 2008 12:49 am

Cherie659 wrote: I don't use Corticosteroids I use Sol-u-Medrol for my relapses so maybe there's a big enough difference between the 2...

Solumedrol is an IV form of corticosteroid.

NHE

superman · Post by **superman** » Tue Apr 29, 2008 9:32 am

Salut mademoiselle Belge,
Personally i have not had any crisis since i started Tysabri.
But i know that some of the patients from my hospital have had.
They were then treated with Solumedrol IV. Tysabri and cortico can be combined, there is no risk.
It helped them to recover a bit.
I understand you can feel depressed, but you are just beginning Tysa, so let you a bit of time.
J'espère que le solumédrol t'aidera même si ses effets secondaires sont rarement agréables.
Et sourtout dis toi que le tysabri est le meilleur traitement actuel conte la scléorse.
Bonne soirée!

Cherie659 · Post by **Cherie659** » Tue Apr 29, 2008 12:31 pm

Hi NHE,

Lol, I knew that. Boy was my brain farting yesterday.

For some strange reason I thought she was talking about those predizone dose packs. But then when I reread her note it was clear she wasn't.

Oh well, thanks for the heads up. As you can see I corrected my note.

belge · Post by **belge** » Tue Apr 29, 2008 8:59 pm

hi everybody!
I just wanted to ask what are the side effects of the corticosteroids? My doctor says there are none but I don't really believe her - she never tells me there are side effects though I had quite some side effects after tysabri!!!
how long have relapses lasted by you? I know it's very different though some of mine were just 1 months and others for about a year and a half (if this is even a relapse or just a plain worsening?!) Anyway, please tell me about the cortico side effects. Superman, how much better were the other patients after the cortico? since I am already depressed I am not really in the mood for some more side effects, I don't know...
thanks for everything, it helps me a lot!!!
veronika/belge

belge · Post by **belge** » Wed Apr 30, 2008 5:39 am

hewy superman, I'm just checking if you received my answer ro your message because I'm not sure I succeded in sending it...
have a nice 1st of May, all of you!
veronika

Cherie659 · Post by **Cherie659** » Wed Apr 30, 2008 9:31 am

Hi Veronika,

Side effects vary from mild to severe on steroids. Here is a link to help clarify them for you.

http://www.nationalmssociety.org/about- ... index.aspx

Good luck.

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