uklizMultiple Sclerosis - Hi, I was wondering my neurologist is thinking of putting me onto Tysabri in a few weeks, apart from weight gain which is not something I would look forward to. Is their any other side affects people are getting and if their was something you know now that you would tell someone who would be just starting this drug what would the advice be
Tysabri - is there anyone taking this, how are you finding it, any side effects?
- Posted:
- 25 May 2011 by ukliz
- Topics:
- tysabri, multiple sclerosis, obesity, weight
Details:
Responses (5)
Delila25 May 2011
Hi, i have not used this drug myself, neither do i know anyone that has taken it, but just from searching the side effects on this website, the following are listed that should be reported to your dr if you suffer from;
Diarrhea; drowsiness; headache; joint pain; muscle cramps; nausea; pain in the arms or legs; tiredness.
25 May 2011
You find this link to patients who have used this drug interesting.
http://www.drugs.com/comments/natalizumab/tysabri.html
Good luck.
ukliz
29 May 2011
Thanks Suzanne66 for the site you suggested, I wanted to say how helpful it was to read the comments from others on Tysabri.
3 Jun 2011
I just had one treatment so far and next treatment is next week but I do find I am very tired. My neurologist is aware of this but it is too early to make any judgments. I had to stop taking the avonex because of the antobodies so this was the next step. When I was on the avonex, at least I had two good days of functioning but we all keep on trying. The Touch Program which I use to administer the tysabri is excellant and I do receive follow up calls from them.
Will keep you posted. Take care.
Faith
ukliz
3 Jun 2011
Hi Faith thanks for answering, how long is the infusion for each month. The first time you got the drug do they give you a small dose first to see if you have any reactions to the drug before they give you the rest of the dose?
Hope you don't mind me asking you some questions, I have so many things going around in my head and so many questions. I see my neurologist this coming Monday, where we will talk about this drug for the first time. What made you say yes to this drug, was their anything that you read or just swayed you into saying yes to the drug? Thanks again ukliz.
17 Jul 2011
Hello ukilz,
Yes, our son is now on tysabri and is on his third infusion. He is being checked and monitored very cautiously. The first week is horrible for him, his neuro said if it cominues he will prescribe provigel for extreme fatigue.
He also has no and I mean no appetite during the first week, Univ of Penn gave him a high protein diet with milkshakes and red meats.
The 2nd week after the infustion he definitely feels better. His appetite is back and he is able to make dinner. He also then is able to enjoy his reading etc. as his cognitive skills return. His best times are the last two weeks after his infusion. He is able to concentrate and feels quite good. He says he will take the one week of pain for three weeks of a better quality of life. It has been an enormous struggle to endure this MS but he is living day by day. Hope this helps you in your decision.
Faith
17 Jul 2011
Thanks for answering, the decision has been taken out of my hands now, about going on Tysabri my blood test for the JCV virus came back positive. So now my neurologist wants me to think about going on Gilenya, and I will be seeing him later this month to talk about this drug with him.
I am glad your son is doing better on Tysabri and I send all my good wishes to him, and yourself with coping with the stress of having someone in the family with MS. Liz.
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