Hi All, I hope you are all well? I’m just wondering in I can pick your brains on your views, advice and any info you have on alternatives to Tysabri. I have been on Tysabri for 6 months but it has been suspended following a continued severe relapse. I am currently undergoing tests to hopefully rule out PML. It is more likely that I am allergic to the drug and my boddy has build up antibodies. Anyhow, either way I will not be able to continue with the Tysabri. I was on Rebif before and do not wish to return to any of the conventional DMD’s. Therefore, I would like to know what other options are available. Thanks in advance Steve
Fingolimod?
Thanks for reply…anything else???
So sorry it’s not working for you 
Possibly Campath if your neuro has access? Not sure you’d be allowed though (heavier duty immunosuppression on top of heavy duty immunosuppression could be dangerous?). Worth asking though? Karen x
Hi. I was on Copaxone for about 3 years but as it didn’t seem to be working for me, my neurologist suggested I change medication. We spoke about the Fingolimod trial, Tysabri and Campath but ultimately, the decision was with me. After much research and reading, I opted for Campath as the risks seemed more manageable and treatable and it fitted in better with my life ie. not taking time off work for monthly infusions. I had my first (yearly) Campath infusion in January and I’ve been relapse free since. I felt rough for a while afterwards but that’s to be expected. Research suggests that some Campath patients can actually improve, however, this hasn’t been the case for me. I’m confident that I made the right choice and, although I haven’t seen any noticeable improvement, I’ll be very happy if it halts progression and allows me to carry on the way I am now. Hope you get something sorted that suits you. Jo x
rizzo27 wrote:
Possibly Campath if your neuro has access? Not sure you’d be allowed though (heavier duty immunosuppression on top of heavy duty immunosuppression could be dangerous?). Worth asking though? Karen x
Karen - I just heard from a friend this morning who is treated with Campath. Her latest MRI shows there have been no new lesions in SEVEN YEARS!!! That is marvelous by any standards but when you think that the test criteria had to be relatively newly diagnosed with aggressive MS it is just miraculous. Liz
efb wrote:
rizzo27 wrote:
Possibly Campath if your neuro has access? Not sure you’d be allowed though (heavier duty immunosuppression on top of heavy duty immunosuppression could be dangerous?). Worth asking though? Karen x
Karen - I just heard from a friend this morning who is treated with Campath. Her latest MRI shows there have been no new lesions in SEVEN YEARS!!! That is marvelous by any standards but when you think that the test criteria had to be relatively newly diagnosed with aggressive MS it is just miraculous. Liz
That’s awesome Liz! I saw a report yesterday that the manufacturer is going to try and pitch the price at $60,000 though - can’t see NICE going for that Mind you, they usually sell drugs at a lower price in the UK than in the US. So maybe $40,000-50,000 ~ £25,000-30,000? It’s so successful that it would save a fortune in the long run, but government agencies aren’t so hot on thinking further than the end of their nose Let’s hope I’m wrong! (Wouldn’t be the first time!) Karen x
$60,000 is not that bad for 7 years of good health and 2 children. That’s one of the issues though - people look at the cost but don’t take into account the savings from not needing any other treatments or interventions, and the fact that this could keep someone in gainful employment, paying taxes…as it has with my friend. Liz x