Hi everyone, hope you’re keeping well
I was diagnosed with relapsing remitting MS (the MS not my MS) 10 years ago and I have had several permanent symptoms, pain doesn’t stop in one of my feet but can still walk for now, eyesight, and hand the usual stuff we get.
I tried and Avonex for 6 month couldn’t take it, having a temperature like symptoms for 4 days of the week each and every week, first injection just as bad as the last one.
Copaxone cause me all sorts of problems I took that for 8 months, I couldn’t do it anymore.
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What type Disease Modifying Drugs (DMDs) do you take, are they injections or something different, pills, infusion or something?
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Any noticeable side effects with what you take?
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Is it a trial medication you’re on?
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When was the last time you had a relapse?
Sorry for the survey, I know they’re a pain.
The reason I ask is I’ve not been taken any DMDs for 8 years now I fear I’m pushing my luck with have not had a relapse for about 9 years. I’ve had a really bad virus for the last 6 or 7 weeks but during this I experienced some extreme fatigue that lasted weeks and can still feel it, I could barely move I was so weak, never had anything like this before, it was more than just a virus.
Anyway I’m seeing my MS nurse soon to explain what’s been going on and what DMDs are available now that I could take, I would appreciate your opinion on what you’re taking to combat/protected against the MS.
Any help advice would do gratefully appreciated guys.
Thanks and take care
David
What type Disease Modifying Drugs (DMDs) do you take, are they injections or something different, pills, infusion or something?
Swallowable capsule, twice daily of Tecfidera
Any noticeable side effects with what you take?
Very early on, localised itching / flushing - easily remedied with anti-histamine; very early on, bout of severe but short lived stomach cramps - dealt with by paracetamol. All symptoms are managed long term by taking the DMD during a meal and ensuring a very gradual increase of the daily dose.
Is it a trial medication you’re on?
Not at all. Was previously prescribed extensively for psoriasis.
When was the last time you had a relapse?
Several years ago, which provoked my diagnosis.
Sorry for the survey, I know they’re a pain.
They are not the worst things we contend with and if the results are genuinely helpful…
I fear I’m pushing my luck with have not had a relapse for about 9 years.
You might well be.
Good luck!
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I too was taking Tecfidera but was unlucky with my body not accepting it and affecting my blood results (low lymphocyte levels. I now take aubagio and started just a week ago. So far so good. I take one tablet once a day at night time. I had a few stomach cramps for the first few days but plain sailing since then (fingers crossed). Reduction in relapses is around 30% I believe and not as good as Tecfidera around 50% reduction rate. Good luck with your appointment. Sharon x
Plegridy fortnightly injection I don’t think it’s a trial drug or that I’ve had a relapse. I’m okay on it to be honest site reaction and it knocks me about a bit the day after but I have been very happy on it. Been on this for just under a year now
Hi
I’ve been on Tecfdera since Christmas. I’ve not had too many side effects, just some occasional flushing in my face. Too early to say how effective it is though.
Before that, I was on Tysabri for a few years, which is an infusion every 4 weeks. It’s probably the best thing available, and kept things very stable. Side effects were non-existant, except for being pooped after an infusion. I stopped though because it can cause a potentially fatal brain disease, and I was at a very high risk of getting it.
And before that I was on Rebif, which you self-inject 3 times a week. It was very effective for me, but after a few years my neuro wanted me to stop as it was affecting my liver.
The thing to remember is that we’re all different. Some people may find a drug very effective & with no side effects, but someone else may have the complete opposite experience. However, there’s nothing stopping you from stopping a drug and switching to another. But getting on a DMT would be wise.
Dan
Avonex for ten years. No sides ot speak of. When the Avonex finally stopped working and I was in bad trouble again, Tysabri. I have been on Tysabri for six years now and it has kept things fairly stable, but do bear in mind that the risk/benefit balance will depend very much on your particular circumstances.
Alison
I was on Betaferon for four years but had problems doing the injections so I stopped using it. I then found that it had been causing depression. I had relapses in both of the last two years I was using it. They weren’t what I regarded as major but they were bad enough to affect my everyday life. They affected my cognitive abilities rather than my physical abilities.
I went on a clinical trial for Gilenya (one tablet, once a day) in 2010 and I’ve been taking it ever since. I had mild asthma-like side effects and mild neuropathic pain in the first few weeks of taking it, but nothing since. I’ve had one relapse that affected my eyesight and I’ve developed foot drop which has affected my mobility.
I think that you’re pushing your luck by not taking DMT. When I had my first attack 16 years ago, they didn’t automatically put you on DMT. Now the thinking is that the sooner you’re put on DMT, the more the progression of the disease can be controlled. There’s quite a range of drugs out there, so they should be able to find one that suits you. Talk to your MS nurse and discuss the options.
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Hi everyone, thanks for all our reply’s and advice.
It was 10 years ago I was diagnosed and the 2 treatment Betaferon and Capaxone I couldn’t handle the side effects so as I was taking anything I was told there was no need to see my MS nurse. But was I spoke to her the other day she was really happy to hear from me and insists I get a full review including MRI of the progression (hopefully not any) she told me there loads of treatments now and I should be on one ASAP. So when I see my meteorologist I will mentioned the treatment you’ve all been kind enough to suggest. Pushing my luck no more.
Thanks again for replying
Take care
David
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hi david
your ms nurse will be as keen as you are to give you a DMD.
whichever you choose, ask her/him which will be available to you if you don’t get on with it.
i chose tecfidera and my nurse said that if it stops working for me, i can have lemtrada.
carole x