Hi everyone I am trying to decide on treatment and am getting nowhere! I was diagnosed in 2006 and for me, MS has been sooo harsh; my mobility is so poor. I have been on rebif twise but it did not agree with me at all; hot sweats, slurred speech, incontinence, didn’t feel like me at all! More like a zombie! As a result I’m scared about treatments but know I need to be on something. I’ve lost my independence, confidence and feel so alone. The MS team have suggested Azathioprine and I have had blood tests for Tysabri which when reading and hearing about it, I cannot doubt the benefits but the risk of brain infection just seems well terrifying. I am only 26 and this decision is sooo dramatic! All these therapies seem to have serious side effects! I was thinking Tysabri but now even with taking tablets giving me a coughing fit Azathioprine seems bit more appealing. I feel like I’m messing the MS nurses about but this decision is so life impacting. What do u guys think?
Deejay1 I totally understand your dillema if it’s any good to you I was on Beta Interferon for 12 months and unfortunatley it did nothing for me had more relapses on it than off it. So it was suggested I went on Aziathioprene which I did for almost 2 1/2 years virtually without any relapse. Unfortunatley I had to come of that too as it was causing concern with my blood tests liver/kidney function. I don’t take anything now apart from Gabapentin for the pain in my legs. Do you have a family member/partner you could discuss it with and I’m sure the MS nurses will understand your concerns who wouldn’t afterall we do put a lot of trust in these people/specialists, but they will monitor you and if they have any worries will take you off it immediatley xx Wishing you all the best in whatever you decide.
Thank so much!
Your welcome xx
I had my 25th infusion of Tysabri today. I am older than you (52) and was going downhill fast. Tysabri has stabilised me. My hope is that it is a stop gap until something better comes along that can remylinate the damaged nerves. I do not suffer any side effects that I am aware off. Good luck with whatever you choose. Peter
You are not alone, just please remember that to begin with!!
I went on my first interferon in 2004 after fighting so very hard to get it but it did absolutely nothing for me and only made my condition worsen even faster. I then went straight onto another which also had no effect (Can’t remember the names) but I certainly remember the very last one by the fact that the needle was so bloody long LOL - Once again that had no effect so as a last resort i was put onto Chemotherapy from which I got 3 quarters of the way through but I felt so bad with no benefits that i stopped.
Well please don’t be put off by this as my circumstances are that I believe i was given an Adjuvant during the Gulf War which meant my immune system just fought even harder to repel the injected drugs.
At the end of the day there are no two people with MS alike and what works for one may not work for another. It’s great that you are asking everyone for their advice but do your research and go for what you think best for you - Don’t forget the option of being on nothing
I’ve just started my own Meetup group in West Yorkshire called 'Break FREE from the Conformity of MS - People often tell you what you can do, should do, shouldn’t do etc and I stay STUFF YOU and leave me alone!! It is started so people can feel they belong and it will be a place where people can speak their minds without fear. I speak my mind and you’ll find that some old fashioned don’t simply like that but does that bother me - NO.
I know it’s hard, I am Secondary Progressive and it is shit but please do try to smile and if you need honest, youthful support (I’m 43 today) I am ALWAYS HERE for you
http://www.meetup.com/Break-FREE-from-the-Conformity-of-MS/
X Mike Brodie