Hello!
I have recently been diagnosed with MS and have been given the choice of two DMT options- copaxone or tysabri. I was wondering if anyone has experience with either of these treatments? Any advice or experiences to share?
Thanks so much!
Elicia
Hi Elicia,
I have no experience of Copaxone, but I am sure others here will be able to help. I did have Tysabri infusions as part of a clinical trial. This drug is an immunosuppressant and has great results of reducing relapses in some people. You should have an in depth discussion with your neurologist who will be able to give you high quality information on results and risks involved. Such powerful drugs have variable benefits / impacts on different people so you need to speak with a qualified medical professional who knows as much about you and your condition. There are no absolutes or definites which makes getting info difficult. I would advise avoiding “Dr Google” as you will be able to find strong evidence for both positive and negative results. When you have high quality info from a trusted medical professional, you can then evaluate your position on risks and benefits.
I could tell you more about my own experience with this drug, but that would be of no real benefit to you. I saw others on the same trial as myself and we all had very different reactions.
Sorry if this does not help.
All the best Mick
Haven’t tried Copaxone but I was on Tysabri for a time. I loved Ty, every 4 weeks with some familiar faces also having the same treatment. Along with other patients for different treatment. Ty buddies as we called ourselves. Unfortuately my course was cut short as my JCV levels were rather high so risk of the bad side effect was to great and I got taken of it. I would have stayed on it given the choice though. If you went that route you have bloods and urine along with the treatment and a few questions before treatment can be administered. Besides the risk complication the only issue I ever had was I tended to feel more tired the week before a dose. Levels of it in my system likely lower at that point.
Can’t say any of the others there had any issues or side effects worth mentioning.
Only thing I’ll add is once you get the infomation to read don’t be alarmed of the rarer side effects. They are rare and you’re constantly checked for any signs so it’d be caught early. That applies to both Tysabri and Copaxone. So don’t let it scare or deter you from picking one over the other.
Goodluck
Hello Elicia
To be honest, it’s a bit like comparing apples and oranges - completely different fruit and one type doesn’t suit everyone.
I have had both and can honestly say that comparison isn’t easy as they are such different drugs. Their administration method is different, as is their expected relapse reduction rate and possible side effects.
Have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid for information about the two drugs. Then have a conversation with your MS nurse. If you don’t have the contact details for a nurse yet, phone your neurologists secretary and ask for a number to phone your MS nurse. I’d expect that with social distancing, a phone call would be what you’d have at the moment anyway.
Your MS nurse is the best person to discuss the matter with, along with your nearest and dearest as any decision you make will probably affect them too.
I will say that in my opinion, Tysabri would be the best choice for most people - but not all. Certainly were I recently diagnosed, that’s what I’d opt for. Sadly I’m not recently diagnosed and no longer qualify for a disease modifying drug.
Best of luck.
Sue