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DMD side effects / anyone not take them?

Hi all,

Thanks to you all who responded to my previous posts. Here I go again…,

i am due to decide this week if I am starting Tecfidera or not. Having looked at the side affects, hair loss, gastric problems, flushing, white blood cell count. I have terrified myself but then I read the positives, I’m in a quandary.

Has anyone remained ok being medication free in real life or is medication inevitable?!

How do I get over my what I would call irrational fear of DMD’s!?

Diagnosed 2007 and never taken any DMD’s to date, although they weren’t offered because I was forgotten about but that’s another story.

My family don’t understand my inability to decide, they think I shouldn’t because I’m ok just now but they didn’t have or have to worry about relapses to which they respond “nobody knows what’s around the corner”

thanks for reading, suppose I’m venting.

Hello

Take the Tecfidera. That’s my short answer. This is why (long answer):

I’ve had MS for 22 years and only been on a DMD successfully for about 5 years (Copaxone). My history with DMDs is bloody awful. I’ve taken 4 different drugs and had side effects from 3 of them that caused me to stop taking them.

Avonex - cognitive problems

Tysabri - elevated liver enzymes aka hepatitis (but it’s very likely that I have autoimmune hepatitis)

Tecfidera - depleted leukocytes

I stopped taking Copaxone after 5 years because it seemed to stop working.

But, my drug history is unusual. In particular hepatitis (which I’ve had 3 times, which is why the Drs think it’s an autoimmune problem - I already have 3 other AI diseases, so it’s rather likely).

So I’ve had lots of relapses after a fairly uneventful first 9-10ish years, the worst one was 7 years ago, since when I’ve not been able to walk. About 2 or 3 years ago, once I’d exhausted the potential DMDs, my neurologist finally decided I was SP. Then this year I’ve had 2 relapses, so officially now I’m Progressive Relapsing.

And, I am seriously disabled. I can’t walk more than a few steps with a walker so am at least 95% wheelchair bound. I have mild cognitive problems, my hands don’t work very well (eg I can’t handwrite any more), I use ISC to empty my bladder (unless I have a UTI when I am easily incontinent), I had a colostomy 18 months ago, I have quite severe spasms and I take a lot of drugs to counteract various symptoms.

I haven’t worked since 2006, at which point I was aged 39. Previously I had a good job, a decent salary and a very nice company Mercedes. I’m now almost 52 and will not work again.

My side effect history is pretty unusual. I have a rubbish body that really doesn’t like many drugs. I didn’t have stomach issues with Tecfidera, nor flushing, and I wished I would get hair thinning as I have too much hair as it is.

There was some research (for some reason the link to the evidence for this doesn’t work anymore) that suggests Tecfidera works best of all when it’s the first DMD a person has tried.

I really do advise anyone with RRMS to take DMDs. Relapses can cause serious damage. Having spent 17 out of 22 years not on one (to be fair, they weren’t available for the first few years), I am a case study in what can happen if you don’t / can’t take the buggers. Right now my neurologist is trying to get me back on Copaxone as taking a different drug is a bad idea. And that might not be possible as I don’t actually fit the criteria (too disabled plus having the ‘progressive’ label). I’m not even too bothered if I don’t get the drug as I doubt that it would help much at this point. But I will still take it if offered. It’s honestly too much of a risk to not take it.

Best of luck with your decision. If you have all the available facts and decide against the DMDs, then it’s not inevitable that you’ll have serious relapses and serious disability. But make sure you know the risks of taking the drugs and the risks of not doing. All of the above is my experience and my opinion. Make sure you take the decision yourself and don’t feel pressured to do anything either way regarding drugs.

Sue

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Wow Sue. What a time you’ve had. Kind of puts it in perspective for me. I think because I was diagnosed in 2007 and never taken or had the choice of medication, it’s strange for me to be having to think of being on medication forever. Looks like I’ve been lucky for these last years. Thanks for your response and making me wake up in a sense that MS is my reality and I should pull up my big girl pants and accept it. Instead of my denial in a way, although my recent relapse scared the shit out me and I’d do well to remember that. Thanks for ‘waking me up’ Hope your neurologist gets you the Medication and it helps. I really am grateful for your response and I’ve seen your comments on others post and I’m sure the are too, you do well keeping us right. You really are an incredible lady who helps us all. Thank you x

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Hi Chopper

I’m with Sue, try it! I wish I’d got on a good DMD sooner, I might have been a lot better now than I am. The thing to remember with side effects is that they’re generally the minority. Chances are you won’t get them. Maybe you will, but you’ll be able to live with it (I’m on Tec, the most common thing I get is a runny nose, and I can live with that!).

And if the side effects do turn out to be too bad? Then switch to another one. The first DMD I had (Betaferon) was horrible. So I asked to swap, and went on another one. That had mild fl symptoms, but I could easily handle it compared to Betaferon.

People often think that, because they’ve been fine so far, then why bother starting. Which sounds fair enough, only you don’t know what the future holds. For me, the risk of relapses and progression is worse than the risk of side effects.

Dan

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Hi Dan, thanks for replying. Good to know you’ve been ok with Tecfidera. I do think I’ve been ‘lucky’ the past 11 years to have suffered a few relapses while having no medication.

The neurologist gave me a choice ‘I think you should take this, it might help’ but the choice is yours, he should’ve just said ‘take this’ I’m not good with deciding but I’m going to try it because yes I am more scared of MS than the side effects.

Thanks

Sam

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Where do I begin - a sweet love story that is older than the sea!

Avonex nearly killed me. How I am here to tell the tale is a miracle.

In the US they have Avonex lawyers. I wish we had them here, I’d sue the pants off Biogen.

Hi Sam. In a nutshell, take the Tecfidera. Ignore the negativity from anyone. You are monitored carefully on it with regular blood work. If there was any indication of adverse reactions or any danger to health you’d be advised,taken off it and treated accordingly. I was on Plegridy for 6 months. It definitely didn’t suit me and I then chose Tec. I followed the instructions and advice given and took it for a year without any problems. I only stopped it when it became apparent that my ms wasn’t rrms.

I am on Tecfidera.started 4 years ago. I never ever had any side effects, not even early on. I love it! Not everyone gets side effects. I’d give it a shot (not literally, which is the beauty of it… simply tablets, no injection)

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Sue the pants off them for what exactly?

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For the damage Avonex caused.

As you haven’t elaborated I don’t know what damage you feel was caused by the drug. I’m assuming you had the usual health assessment done prior to being prescribed it as well as regular blood and liver function blood tests done while you were on it?

Also can I add, that I was DMDs free for over 10 years but eventually decided against playing russian roulette. I was and still am a mild case so hesitated. You always meet or hear of people who are mild and without DMDs and then get struck with a massive relapse which could possibly have been avoided with meds. That’s why after years and years I finally went for Tecfidera. My neurologist said lesions and damage happens even without you feeling a relapse (in silent areas of the brain) so mild ms doesn’t mean nothing is happening. And again, even if there is nothing going on it just needs this one big relapse to literally knock you off your feet wishing you’d at least tried. I recommend Tecfidera.

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Hello everyone

This is a really useful thread as my husband (RRMS diagnosis for about 20 years, now aged 55) is about to start Tec and we are trying to understand as much as we can about it and other DMDs.

I have found your various thoughts, suggestions and advice very, very timely.

Really grateful, thank you.

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Thanks for your reply Poppy, sorry to hear your MS has progressed x

Not much I can say to that but glad you’re here to tell your story. Hope you’re doing well now.

Hi KM, I could’ve written this myself as like you I’ve been mild for years to until a recent relapse, hence the decision I have to make now. The neurologist I seen recently explained to me that MS isn’t always about the relapse and things are happening which we are unaware of, I didn’t know this and I thought I’d researched MS a great deal over the years.

Glad to hear you’re doing well on Tecfidera and thanks for replying x

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Hi, yes I wanted to find real peoples experiences before deciding. If you search the forum ‘Tecfidera’ you will see a lot of posts. Good luck in your decision x

Chopper and Dogwalker. When you start taking it you/he might sail through without any of the mild/sometimes common side affects some people experience when beginning. Personally, I only experienced flushing. Beetroot bonce for about 15 minutes now and again! Don’t be alarmed. Come back here for some advice and recommendations to ease any of these.

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I was diagnosed in 2002 and went on copaxone daily injections nearly right away and I have stayed fairly stable - 3 years ago was offered tecfidera and jumped at the chance to change DMD’s thought tablets would be handier but my bloods are too low and now going back on copaxone 3 times a week - has it worked for me - seems to have - I did say to my MS nurse that I wondered if I should be DMD free and she said that it was a bad idea as a bad relapse could hit me for 6. I do remember all those years ago asking if the drugs would work and the neurologist did say - come back in 20 years and we’ll see… I can see now that its all about disease progression.

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I don’t take and was never offered DMD’s. I think many of us, diagnosed 20 odd years ago, were not. The DMD’s have come about in more recent years.

I read a zillion posts on here and elsewhere re various DMD’s. Fact is there are thousands of us out there who have never been on them

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