Hi all , I’m new to the forum and have been racking my brains as what to do regarding starting treatment.
I was diagnosed back in 2010 with MS and since then thanks to God I have been stable and just had the pain numbness and tingling over the years. Pre Covid in an MRI they noticed there was a lesion on my brain. I was advised to start treatment but as I felt well within myself I declined it.
I recently have had a very difficult few years in terms of mentally, physically, having to be main carer as well as going to work fulltime. As a result of this I have felt like I’ve had a flare up. But I can’t quite identify if it is the MS or Stress. I have been once again offered therapy and I don’t know what to do. (as I feel like they just want me to take it…)
Is there anyone that currently takes Ponvory or Dimethyl fumarate (tecfidera) and is able to share their experience in regards to what’s working and what’s not and what lead them in their decision?
Hi Shamzi. I’m not on either ( my treatment is Avonex) but in general it’s best to start treatment as soon as possible. There has been some recent study which suggests that the earlier started the better the outcome.
Definitely it is a good idea to get on one of them as soon as possible as an insurance against future relapses. They are not a treatment for anything that has already happened.
I’ve been using Tecfidera for over three years and haven’t had a relapse in that time. Also no side effects so it’s worked well for me.
Good luck with whatever you decide but don’t leave it too late!
As others have said, best to start asap. I’ve been on Tecfidera for 5 years and have been relapse free in that time. My MRI’s also show NEIDA amd i feel fine.
Tecfidera is a taken twice a day with food, usually breakfast and dinner. I’m not a big eater in the morning so usually take it with a piece of fruit or a smoothy but have taken it on an empty stomach with no side effects. I had some flushing way back in the first few weeks of use but that soon settled down. Bloods every 12 weeks to check Lymphocyte count. All round, pretty easy, I’d recommend it.
Hi, I wasnt diagnosed until I had secondary progressive ms. Ms was mentioned by a private neurologist, but the NHS one said no - did other tests which were negative and by the time he got around to thinking maybe ms the symptoms had cleared up and he said to wait, wouldn’t make any difference to treatment etc… but now its too late.maybe if I had started treatment then it would’t have progressed to SPMS.
The important thing is to avoid relapses as much as possible because although most relapse symptoms get better in remission, they leave some degree of permanent damage. We’re all different of course but we are lucky that we have so many options of treatments available now to lessen the effects of relapses. MS is one of the big conditions, throw everything at it!
, I’m new to the forum and have been racking my brains as what to do regarding starting treatment.