Last reply 2 weeks ago
Tysabri

Hi
I recently got diagnosed with MS
My Neurologist and MS nurse are pushing me towards the Tysabri drug
I have read all the messages regarding the side effects
But that aside I am worried about the other effects on the body organs. I am also ahearing that people who come up to their infusion have a real downer experience for about a week to try to get back on it.
I am changing my lifestyle as I was a very active 57 year old man

Don’t know what to do – go on it or roll the dice!!!

 

Note: Title amended to correct typo – Admin (Stumbler) 😉

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stumbler
2 weeks ago

Hi @johno and welcome.

Yes, it is a case of balancing up the risks. Tysabri has been used for a few years. Recipients are constantly monitored to mitigate risks.

MS is an unpredictable and potentially debilitating condition. Any damage caused may be irreversible. Risks may be mitigated by lifestyle changes, e.g. diet, but there is only anecdotal evidence for this.

So, what do you do? Well, that’s your call. You just don’t want to find yourself in 2/5/10 years, wishing you had decided the other way……………


vixen
2 weeks ago

Hello @johno, welcome to Shift. I was diagnosed last year at the ‘more senior’ side of the sliding scale too, so I know what a shocker it is. If your diagnosis is very recent, be fair to yourself and give yourself a little time. The current thought is about ‘hitting it early, fast and hard’ but, given that diagnosis these days tends to cut out the previous experience of years and years of establishing, its important you don’t feel too rushed. I gave myself a month to absorb the diagnosis and consider what this might mean, then two weeks or so to start research. I chose Tecfidera as it fitted in with lifestyle. Even when I made this choice I waitied until I had holiday due so I could prepare myself. Whatever you do, don’t read horror stories on the net, stick to official sites for information. There are lots of tips on Shift if you use the search and key DMT terms, above. This said, if you are being pushed towards Tysabri, this will be because your team have the full insight and facts of your case, which of course, we don’t. Anyways, lots of support on here, whatever you decide. All the best


wjgregg
2 weeks ago

Dear @johno,

I was diagnosed with rapidly advancing R.R.M.S. last summer following a three-week stay in hospital (and a week-long episode of double vision in February). I am now 50.

My neurologist, who is an M.S. specialist in whom I response complete trust, advised Tysabri immediately. In a few weeks I will have my thirteenth infusion. I have been entirely happy with the experience. What side-effects there are are infinitely preferable to the alternative of relapse.

Good luck with whichever D.M.T. you choose but remember, your neurologist will not have recommended Tysabri lightly. He or she must have had good professional reasons.

Best wishes,

Jon


mamawals
2 weeks ago

I’m in the same boat. To Tysabri or not to Tysabri? It’s such a hard choice! So far my symptoms have been mostly manageable and not as scary now that understand what’s going on and what to do about it (rest not fight through it!). Have you been tested for JCV? If you’re positive that might also affect your decision. My doctor is really pushing for Tysabri even though I’m JCV positive. Good luck in whatever you decide. There doesn’t seem to be any right choice when it comes to DMTs☹️

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