This is from my local MS Society group...
First positive primary progressive phase three trial results
In October, pharmaceutical company Roche announced top-line results from the first positive phase three clinical trial for people with primary progressive MS.
The trial compared ocrelizumab to a placebo in over 700 people with primary progressive MS. Treatment with ocrelizumab led to a reduction in the progression of clinical disability by 24% compared to the placebo. This reduction was sustained for at least 12 weeks and was measured by the Expanded Disability Status Scale ( EDSS).
Data was also reported from two phase three trials, comparing ocrelizumab to interferon-beta (Rebif) in over 1,600 people with relapsing MS.
The results from these trials show that ocrelizumab reduced the number of relapses compared to Rebif by 46% in one of the trials and 47% in the other. Ocrelizumab also significantly delayed the onset of clinical disability compared by Rebif by 43% and 37% in the two trials.
The data from these trials will be submitted in early 2016 to the U.S. Food and Drug Administration and European Medicines Agency so that the licencing process can begin.
Read more here. https://www.mssociety.org.uk/ms-news/2015/10/first-phase-three-trial-show-positive-results-primary-progressive-ms
I have been on tysabri since october 2012, i have blood test for JC virus every 6 months have they had being coming back negative but the last came positive.
The Tysabri has been great.
Taken from John's (Heste) post here:
I too have PPMS. Personally I prefer it to RRMS as it means I don't have to take medicine every day or inject myself. I know that tomorrow I will have the same symptoms as I have today. It's consistent, I think this makes it far easier to manage.
There are plenty of positive things about a PPMS DX. Here are just a few from my experience:
1. Its not cancer. or any of a long list of other potentially fatal, life shortening DXes that you could have had. PPMS does not have a course along which you are bound to travel. It might just as well stay the same as it is now for as long as you live. It wont kill you. Just getting a DX is better than the life of limbo so many of our members are in.
2. To manage fatigue I have made a space in my life. Without a DX people constantly fill their lives with stuff. One of the worse culprits is "work". We barely have time to live. A DX of PPMS make you look at all the "stuff" and ditch as much as you need to make a little space for yourself. I now only commute to London three days a week. On the other two days I work from home but apart from not commuting so much I spend more time with my wife, dogs and cats.
3. I get pain in my legs when I walk. I don't know if you have this too. It slows me down, it wears me out, it entitles me to DLA (higher mobility allowance), it gives me a free car every three years. It gives me a Blue Badge so I can park almost anywhere.
4. I have bladder problems. I don't know if you have this too. If you don't then there is another positive. Because of this little problem I really can't travel by train anymore (the toilets are often out of order and that's too risky) so now I commute by car (free car) and park in the director's car park under my office. My company is good but really have very little option but to make these 'reasonable adjustments'.
5. I am free from all heavy work. OK some of this heavy work I have passed on to my poor wife. Cat litter bags weigh 20Kg which she now has to lug down to the cat house or carry upstairs. In the office no one ever asks me to give them a hand shifting computers or boxes of books or papers.
6. Having PPMS is a lot like being fabulously wealthy in that you don't have to work so hard and it opens doors for you (literally). People step aside to make way for me. At the office people come to me rather than ask me to go to them.
I get a private executive bathroom that is bigger and cleaner than my co-worker facilities (OK it's the disabled loo, but the effect is just the same)
7. I get free light bulbs. Yeah, I know. I don't understand this one either. Motability have sent me six now, and a power saving plug that turns off my printer and monitor when my PC is powered down. For some very good reason Motability think I need to save the planet.
8. We get discounts and privileges in many places. For example, the London Eye. I would not need to queue for half an hour and I pay a few quid less. why? I don't know. It's just their rules. OK I couldn't stand in a queue for that long, but why it should cost me less I don't understand. If I was blind it might make sense to discount the ride but I would appreciate the view as much as any full paying visitor. Just our privilege I guess.
9. I walk with a stick. It seemed daunting at first, but it was that or falling over. But what a difference it makes. Suddenly people give way to me. Shop staff are quick to carry things to the car for me. You know, I could become extremely lazy but people always want to do things for me. I have another view of this, it's a Buddhist thing. The people who I allow to do things for me, to hold open doors for me, to fetch and carry for me, also get something out of this. These people then feel good about themselves for what they did. I like to think I am creating opportunities for people to feel good about themselves.
10. I get to chat to people on this forum. Without MS I would be writing on Equestrian forums that are full of people nearly as self obsessed as me. My horses' entire lives are documented on equestrian forums. But here we talk about each other. We support each other and generally prop each other up. Good isn't it?
Now if you can't think of 10 positive things that MS has done for you then you really are not trying. Yes it would be nice if we didn't have MS but we do, so we must make the best of it.
Next we get on to the DVLA. Don't worry about them. If you feel you are OK to drive then chances are so will they. I have three year driving license. In 2009 they will ask my Neuro and Dr if I am OK and then give me another three year license.
If my insurance company even thinks about increasing my premium due to MS then I tear their arms off and beat them with the soggy ends. They cannot do that. That's discrimination.
MSers are covered by the Disability Discrimination Act ( DDA). Nobody can step onme without feeling the sting of that little firework.
I have recently been told, all in the space of 2 weeks, I will probably loose my job due to ill health. And I am now secondary progressive MS. My Neuro is arranging rpt MRI, Echo, ECG as he has suggested Mitoxantrone may be suitable for me. I have mentioned Tysabri to him, he was open to suggestions but seemed keen on the Mitoxantrone. I have researched it a bit, but am really struggling to find any positive results out there. Can anyone inspire me/help me with my decision? :/
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