Hi All I’ve just come back from seeing my consultant and we have agreed for me to start Tysabri in the next few weeks following a negative JC virus test. I’m apprehensive and nervous about it. Does anyone have any experiences of Tysabri that they’d like to share with me? Thanks, Helen x
Now on number 4 and no problems encountered at all - i’m so glad I’ve been given this drug. I would not hesitate to accept it even if JC positive - the chances of getting PML are small, but the chances of my MS progressing are very very high. I’d take odds like that any day Good luck with your first infusion - I took an antihistamine just before in case of minor allergic reaction but turns out not even that is necessary (I used to be constantly drugged on ibuprofen taking rebid)
Just had infusion no. 24. Have not had a relapse for over a year so it does seem to be doing the trick, My MS was very active before.
Monthly trips to the hospital are a bind but I see the same people every four weeks, so there is a social aspect. Blood test is taken every quarter a week before the infusion. It interested me that the cost to the NHS is around £25k a year, so glad I don’t have to pay for it!.
Had infusion no. 2 a week n half back… no problems so far! Except for the anticlimax after no. 1 thinking it was gunna be some big event… and in fact it was just a boring few hours sat in a hospital!! lol
Got my JC results through today… Positive. But I know the Tysabri will do me well so Im really not bothered about that!
I dont appear to get any side effects so far… fingers crossed it stays this way No real tiredness after… No headaches… just normal me! No improvements to comment on as yet but I believe it can take a while to see what improvements if any you will get.
Good luck with it! You will be fine x
[quote=“Twinklejelly”] Now on number 4 and no problems encountered at all - i’m so glad I’ve been given this drug. I would not hesitate to accept it even if JC positive - the chances of getting PML are small, but the chances of my MS progressing are very very high. I’d take odds like that any day Good luck with your first infusion - I took an antihistamine just before in case of minor allergic reaction but turns out not even that is necessary (I used to be constantly drugged on ibuprofen taking rebid) [/quote] Thanks for your reply. Has it made you feel better? Aside from stopping your relapses, has it made you feel better than before? Thanks, Helen
My transfusions are way past 50. The changes that have occurred are phenomenal. I have had 2 horrific relapses’ one where I wasn’t expected to manage again without a wheelchair. It took a while but the wheelchair is now back in the cupboard and I can walk unaided on flat ground, with a stick if the ground is rough.
I feel I have been given a new life to start living again.
I start tysabri on 3rd october, i accepted it without the JC virus test being complete. (lucky when i did get results it was negative)
No matter what i’d say its the smart choice
I ah ave my 40th infusion next week. Since starting Tysabri in Aug '09 I have had no relapses sonce then. I was on both Betaferon and Rebif, whilst they lowered the relapse severity the rate was unaffected., I was averaging around 3,5 relapses a year before starting Tysabri.
As far as the JCV is concerned I told the MS infusion nurses and the MS neuro not to waste NHS money getting the test done as I won’t be coming off Tysabri until they are sure that it isn’t working for me anymore. Why would I want to know for such an inifinitesimal risk? Ain’t worth the worry, why worry about something that has such a low risk compared to the gains?!