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Posted: Fri May 02, 2008 5:16 am Post subject: it's me again
hi everyone!
I have just read that some of you have stopped tysabri because of no effect.. I am really considering this too because my symptoms are rapidly worsening after 1 infusion April 21st. Today I almost cannot walk anymore, I have incontinence problems, no balance (besides severe depression)...
Lollipop, Lee, did you stop? How do you feel now?
I am a bit concerned to stop just after 1 infusion but I have never felt so bad. I might get on the corticosteroid infusions though I feel this might be too much chemistry for me.
well, let me know,
tnx, v
Hi Belge,
Yes, I stopped Ty and I'm not sure if that was the best thing?! Had my last infusion in early April... but now I can't stand up straight anymore. Even swim classes (for MS'ers) are very difficult, since my body only wants to bend forward. Getting dressed is really getting tricky! I wouldn't stop after only one infusion, but give it a fair try. "They" say, that you don't know if it's working till at least 6 doses. Best bet: Discuss this with your neuro. I talked it over with mine and we decided to try Novantrone. Will likely get my first dose this week.
Good luck!
Since March (after my third dose), I have been reacting very bad to Tysabri, 1 week after infusions. All of a sudden buzzing noises come from my head, I feel dead tired for a few days straight. Fortunately there has been no progression of my neurological disease, unfortunately there are a few problems that Tysabri causes not yet discovered .... since all my medical examinations, allergic blood tests, MRI's are normal. My head feels bombarded, the ringing noises from my head after my fifth infusion are now constant (can imagine until Tysabri leaves my bloodstream), and generally speaking man this is a weird medication....
I am also considering to start Novantrone, however I am 29 years old so maybe I am abit young for this? How old are you lollipop? _________________ an action brings..... a reaction !
Hi Stathis,
I think age is irrelevant when deciding to try Novantrone. Some patients are young, others older. I'm 40 and I have exhausted all other meds, so this is the one that's left to try. I had no side fx like yours with Ty, "only" worsening of the weakness in my legs and upper body. I'll post after my Nova infusion and let you know how it went.
Joined: Jun 26, 2004 Posts: 229 Location: Near Chicago
Posted: Tue May 06, 2008 8:21 pm Post subject:
Hi Veronika!
I just had my 12th infusion of Tysabri yesterday. With the first three infusions, I felt quite a bit worse with total exhaustion for 2 out of 4 weeks. After about the third infusion, my energy started to improve, as well as bladder symptoms and leg strength. My strength and bladder symptoms are notably better after one year.
Maybe you'll start to do better after a few infusions? As Harry said, if you were in the midst of a flare up from the MS, that could account for your feeling poorly too. _________________ Take care,
Ewizabeth
Previously Avonex, Rebif & Copaxone
RRMS
~Tysabri since 6/04/07~
hey, tnx again for your replies! I am now much better as far as my mood is concerned - not depressed anymore and sort of calm... Though my legs are still very weak and I can not really walk but I hope things are improving. I have not yet decided whether to continue with tysabri or not, I'm kind of afraid what the next injection might do to me. My neuro thinks I should absolutely go on, I had some hopes with my ayurvedic tretment in India but I will have to postpone it; I'm starting with a neuro who does manual medicine and is known to be very effective so I don't know, I tend to be somehow torn between all these options... anyway, I think you must know how I feel.
Btw, do you still work? I was working normally until now and this is actually my first absence from m job and I had quite some problems coping with that too. How do you deal with it?
have a nice day, v
I have had 8 Tysabri infusions, and I am sheduled to keep it up until January.
After my very first transfusion I got a terrible headache, nausea, and stomach pains. But it seemed to be only the first that affected me that bad, it only lasted overnight.
Looking back, I don't know if Tysabri is doing alot for my body, but I do feel like it has helped my thinking and mental capabilities.
I am hopeful that maybe I will be able to work again, if at least from home. I will always miss working in a veterinary hospital (2 1/2 years as a kennel tech), but it's too much for me.
just to give you another opinion. As you might read on my Tysabri thread I started Tysabri in 10/2006 had 6 Infusions and Stopped in April 2007 because I wanted to try LDN and Antibiotics. After a year on ABX I restarted Tysabri 3 Month ago (had 3 infusions)
I didnt write it down here and didnt talk to my neuro about it, because I wasnt sure about it, but after the first infusions in 2006 I thought I felt subtile worsening in spasticity and walking abilities.
When I stopped Tysabri and got on ABX I felt a lot better and especially my walking abilities got much better - as you might read in my ABX Log.
Though my walking abilities got worse over the time on ABX (after my surgery) I do believe I felt another worsening when I restarted Tysabri in 05/2008.
I really cant say whats the actual cause for the worsening is but maybe Tysabri has some negative symptomatic effects on me.
All the best...
--Frank _________________ Current regime: Tysabri restarted 05/2008 after LDN, ABX Wheldon Regime for 1 year, interested in T-Cell vaccination, helminth immunomodulation
My partner was diagnosed with MS at the begining of this year and has since had 3-three day infusions of methylprednisolone (solumedrol). In any event after the first set of infusions he began to have what he thought was another symptom, burning/painful sensations on his right side-primarily his right leg. In any event he had his two most recent set of infusions for that very sympton. As it turns out methylprednisolone depletes B vitamins in the body and that can lead to the symptoms he had (thanks to info from JimmyLegs...from this board). Brian recently began taking B 100 complex vitamins and that sympton has since gone away substantially. We're actually thinking it the burning may not be so much a symptom of ms, but more from a vitamin deficiency from the steroids...wish we had known about that before he spent so much time being infused the 2nd and 3rd time. So that is the one point I'd make about steroid infusions...
Hi Cha
As a 12 year MS guy, i have some steroid's experience.
The effects of steroids aren't due to vitamin decrease or increase.
Steroid side effect are often unbearable and there is nothing else to do than taking them early in order to avoid sleep disturbance while taking it.
I have never heard vitamins can really help.
Sorry to be direct but the only treatments that can really help against an aggressive relapse MS are the CRABS(copax., Rebif...) and Tysabri.
You can still look after random solutions but don't expect too much.
Last word, your message does not match the content of this section: Tysabri.
thanks
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