Tysabri&lemtrada. Turning down treatment
Hi all, Just checking this site out properly for the first time. Hoping it will help to discuss things with other msers rather than feel kind of isolated with my condition. I also have a decision to make regarding treatment which talking about with others might help.
I'm on gilenya which is not working so my neuro an ms nurse want me to switch to tysabri or lemtrada. I'm a pretty healthy 29 year old, although I relapse once a year with drop foot, fatigue, altered sensation for like 6 weeks or so then go back to baseline. My only residing symptoms are a bit of numbness tingling and a bit of drop foot after long walks. So.. I'm thinking, do i really want to move onto these pretty hardcore drugs with risks and side effects when in my eyes I'm doing ok? I think I will stick it out and carry on taking gilenya or no treatment and try to focus more on healthy eating, exercise and meditation.Does anyone else take this approach?
The evidence is pretty overwhelming with MS- your 'bit of this' and 'touch of that' will worsen exponentially into irreversible damage in just a few years. At first the disease will eat away at compensatory mechanisms in you brain- basically the brain's back up system. Once these are severely damaged the result of the damage starts to break through into function, ie you MS attacks. Just like brain damage by drugs, alcohol or traumatic brain injury these changes are permanent & disabling. I agree Gilenya is not working for you and your disease is breaking through on this treatment. I would encourage you to look into the stronger treatments offered to you. Tysabri is only 12 days of treatment a year. Lemtrada is 8 days of treatment you entire life. Thee therapies, especially the latter, have the potential to let you live a normal life without foot drop, bladder incontinence, fatigue, memory problems, muscle pain, wheelchairs to name a few. There are a few risks (less with Lemtrada in my opinion, having taken both) but the risks should be evaluated in the context of the very real damage MS cause without treatment, which in my experience is much worse. I do apologize if this sounds harsh, I don't mean it that way. You are at such a critical juncture I wanted to be honest about choices & what MS is really like. Take care, Emma
The MS Blog of Barts in London is good place to look at current thinking of MS (http://multiple-sclerosis-research.blogspot.com/). They compared Lemtrada with Tysabri. Their results are here :- http://image.slidesharecdn.com/nzvsaz-140815040728-phpapp02/95/natalizumab-vs-alemtuzumab-1-638.jpg?cb=1408093678