Last reply 4 years ago
Anyone RRMS and DMD Free?

Is anyone a relapsing remitter and DMD free? I’ve been having large and itchy site reactions with Copaxone, which last for weeks. I look like a battered woman when going to the swimming pool as I have all of these purple marks on my legs where the reaction hasn’t fully gone…High dose antihistamines made no effect.

I’m considering ditching the Copaxone and either waiting for BG-12 to be approved and ready for use, or taking LDN. Help! What do you guys think I should do?

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cameron
5 years ago

I think I would consider Avonex. As you know, you can’t get LDN readily on the NHS and at least while you’re on a DMD you are giving yourself some protection against relapses. That is (as I see it) the primary consideration – even more so than the skin reactions. Having said that, I would think that your MS nurse would be very concerned about these and would encourage you to switch drugs.


angeshiftms
5 years ago

Hey @cameron 🙂 They were worried about my depression risk so wanted to avoid interferons for as long as possible. I’ll speak to my MS nurse but just wanted some general opinion before I do. I initially wanted to go on Avonex but with it being an immunosupressant I’m now not so sure. I was also interested to find out that the ARR reduction in all of the CRAB is approx 30%, which also tallies with the placebo effect :-s My MS seems pretty mild for now, so I’m wondering if I can tough it out for another 6 months DMD free until BG-12 becomes available…


scramblelina
5 years ago

I have RRMS and the only thing I take is a higher than usual amount of vitamin D. My neurologist isn’t very happy about it but I’d rather stay off drugs completely until it becomes absolutely essential. I am very careful about what I eat and so far (touch wood) it’s working for me.

I did consider going on to DMD’s last year after a couple of relapses but I took into account the amount of stress I was under and decided to change my lifestyle to try and minimise that, since then I haven’t had a relapse.

I’m aware this is a slightly controversial view and I wouldn’t want to push it onto anyone else but I do think that any form of drug therapy should be viewed as a part of your treatment and you should also take into account your lifestyle in order to get the maximum benefit.

Hope you find what works for you.


hugmachine
5 years ago

I was on extavia (interferon) for a year and was pretty miserable on it. I have sleep problems at the best of times and the injections made it worse so i had to inject during the day and cope with the flu like symptoms.
i also had big welts on my legs from injecting – the solution i was told was to stop injecting into my legs haha.

I came off extavia in september because of other health issues and i havent started anything else. I have to say i have a lot more energy now. plus its nice not to inject every 2nd night.

saw my neuro on friday and theres no plan to put me on anything else right now (until my other issues get resolved) ive had a few flair ups but no relapse.


angeshiftms
5 years ago

Am really not sure what to do. Think I’ll maybe give the Copaxone one last shot, so have started the Fexofenadine again today in preparation for beginning again on Friday. Fingers crossed…


stumbler
5 years ago

Good luck, Ange.


angeshiftms
5 years ago

Thanks John 🙂


Chris_DSouza
5 years ago

Have been DMD free for about 11 years. Have found that being choosy about my diet and working less has been the best help 🙂


oskar
5 years ago

I like the idea of working less, but sadly, it comes with its own rewards, not least, pay.
I’ve been on a trial drug, Dacluzimab, since January 2010 and have had one relapse (compared to one annually), at least one that could be identified as such.
Downside is, I never knew I had a propensity for discoid eczema (I do now) and there has been one recorded death through liver failure.
Thankfully, apart from itch spots on arms and ‘leg dandruff’, I feel largely fine.
The sister drug of Dacluzimab, the name of which escapes me, recently got good reports on tv – trial was carried out in Cambridge, I believe.


stumbler
5 years ago

You’re probably referring to the Campath (Alemtuzumab) trials, @oskar .


oskar
5 years ago

I think I am @stumbler, thank you.


melissa-g
5 years ago

Hi @angeshiftms, I had similar issues with Copaxone, been off it for almost 3 months and still have a couple light bruises left over! Ive reccently started on Gilenya, which is a once a day pill, and so far so good. I wonder if it would be an option for you as well?


angeshiftms
5 years ago

I will ask about Gilenya, but being based in the UK, I think that my chances will be slim…


pottypete
5 years ago

I’m like @scrambelina I don’t take any meds for my rrms. As you may know, I have extreme reactions to a huge amount of meds, so steer well clear of them if at all possible.


angeshiftms
5 years ago

Do you think any of them actually work, or is it placebo effect? I’ve read that the placebo effect is huge for MS patients and is approximately 30%, which interestingly equates with the CRAB DMD annualised relapse reduction rates…


scramblelina
5 years ago

I think the placebo effect is enormous myself. My decision not to take DMD’s was based on a number of factors many of which don’t apply to anybody else and I wouldn’t want to unduly influence anyone else’s decision making but you might find them useful.

-I have and always have had a pathological loathing of drugs, I’m one of those people who don’t take an aspiring unless it’s absolutely necessary and the thought of taking such strong drugs potentially for the rest of my life was hard to take.
-Every action has a reaction, drugs that are strong enough to make a real impact on MS will invariably have other effects on the body.
-I’ve always been a great believer in good nutrition and the difference it makes to general health and wellbeing. Until a short time ago I ran a company along those lines and saw at first hand the difference a healthy diet made in a very short time to people with all levels of fitness and differing health conditions.
-I may be wrong but in the research I did it seemed that the DMD’s don’t actually impact in the long-term disability statistics, in other words, they will potentially lesson the frequency of relapses but won’t make any difference as to the long-term outcome of MS.
-Stress has always been a huge factor in when I relapse, my relapses have always occurred when I’ve been under enormous stress. I made a decision to change my lifestyle to minimise this as much as possible, I appreciate that life is inherently stressful but there are things you can do.


cazzzzzy
5 years ago

Totally agree with you about the placebo effect Scrambelina and also I’m learning more and more about the importance of diet…

Diet is my only real hope right now with PPMS so I am following my diet plan (which is boring as hell to be honest but at least I know I tried….)
It’s annoying in a way that I don’t even have that choice but to be honest I think I would be the same as you Scrambelina and opt not to take the DMD’s and focus more on diet… I know they can help people massively but I’m also one of those hyper sensitive to medications…

Do wanna try LDN though :/

xxx


scramblelina
5 years ago

@Cazzzzy, your diet doesn’t have to be boring. It does take a mind-shift though to be able to get your head around healthy food also being delicious! It can also take a bit more of an effort with preparation depending on what you normally eat.

If it would help, I’m happy to send you some recipes and information that I used to use for clients.


scramblelina
5 years ago

Should amend that to I’m happy to send anyone who wants it the information and recipes!


cazzzzzy
5 years ago

Thanks Scrambelina! ~~~ I have been following this diet for over a month now and to be honest I am finding my taste buds are changing and I am now more tempted by healthy foods more than I ever used to be! Also my son is a great cook and pretty creative so he helps loads in the kitchen (not sure I could’ve done this without him!)…

Recipes and information would be a great help if you don’t mind! Thank you so much!!! 🙂 xxx


pottypete
5 years ago

@scramblelina Forget the recipes, come over and cook for me. You look bloody gorgeous, lol. Hubba, hubbba! 😉


scramblelina
5 years ago

Will add you as a friend so we can exchange emails. It’ll take me a couple of days to put it together so bear with me over the weekend!


cazzzzzy
5 years ago

I should say though that the diet I’m following “MS Recovery Diet” is strict – it’s similar to the best bet diet which means … No gluten, No red meat, No dairy, No eggs and No yeast…

So yeah I’m really really keen on recipe ideas if you have any 🙂 xxx


cazzzzzy
5 years ago

Ok that’s cool!!! Thanks so much, so much appreciated!!! 🙂 xxx


scramblelina
5 years ago

Just in general health terms red meat, gluten, yeast and dairy are things to avoid or at least minimise as much as possible as our bodies don’t tend to cope too well with an overload of them. Like most things though it’s all about moderation.

The problem is that with our modern diets we have a tendency to eat meat 2-3x daily and gluten at virtually every meal in some form or other.

Ideally our bodies are designed to cope with a fairly basic, natural diet. We haven’t really evolved very far from cavemen days and our modern lives of processed foods, modified grains and vast amounts of dairy and red meat aren’t doing us any favours!

Will put some information together for you. If you want me to tweak it a bit for you personally then send me some information as to what you would normally eat and what you like/dislike and I’ll do my best.

@pottypete, thanks but I’m not actually much of a cook, just very good at telling other people what to do!


cazzzzzy
5 years ago

Scrambelina ~ lol I have this feeling pottypete might not mind being told what to do so much 😉

But yeah from what I’ve read recently foods such as gluten & dairy etc may probably trigger a reaction as we haven’t yet evolved to digest them so if someone has an autoimmune illness I can see the logic in trying to avoid them!

Thanks again xxx


scotkiwi
5 years ago

I agree with @scramblelina diet is important.
I too am RRMS for 13yrs now. I refuse to take DMDs and am as active as this joyful condition allows.

To get to/from work I bike (its actually easier on my legs as they rest on the downhill bits, and I use the gears going uphill). Somedays its a fairly easy bike, but other times its a friggin nightmare. But I still do it to stick two fingers up towards my condition. Regardless of how long it takes.


pottypete
5 years ago

@cazzzzzzy You’re so right, lol. Scramblelina could tell me to do anything, hehe. I’m a pretty good cook. 😉


melissa-g
5 years ago

totally respect the whole theory of the placebo effect etc thats being discussed here, but I personally am on Gilenya, which is said to reduce relapses up to 50% (in a 2 year study) and I try to stay pretty positive that I’m helping myself, and hopefully slowing the disease progression by taking it.

On the Candaian MS society website it states the following:
In a two-year study, Gilenya was able to reduce the risk of sustained disability worsening by 30% compared to those on a placebo. Gilenya also reduced the increase in brain tissue injury and brain atrophy as measured by MRI over the course of the study as compared to the placebo. (http://mssociety.ca/en/treatments/treatments_updates_fingolimod.htm)

Just thought id add my 2 cents in!


Lillylilly
5 years ago

I don’t actually care if it’s the Copaxone or the placebo effect that works, the point is that it is (for the most part) working!
I am pretty content being on any med, I feel at least I am doing something. I tend to think of the longer term effects of being on medication too, and feel that I am furthering my chances for a positive later life with MS.

Ange, I too suffered those side effects when I started taking Copaxone, but I stuck with it. I couldn’t bare the idea of injecting my arms, so never did, I found that my bum was really sore to inject, and that the reactions on my stomach and legs was horrendous (golf ball sized lumps, bruising and itchiness that lasted til the next injection in that area). The only place that didn’t bother me as much was my hips, so I have exclusively injected into them for over a year, (on Copaxone 2 yrs and 4 months). See if you can find a place that hurts the least, and use hot/ cold packs, anti- inflammatory gels etc. to manage the reactions before you look at switching. And if you use your hips, noone can see the marks in a swimming suit!


angeshiftms
5 years ago

Well, a little update on this one..I took about a month’s break from Copaxone, then restarted after a week of the high strength antihistamines. And….all is well! I still get little reactions, but nothing as bad as before. And thank goodness for that because it’s looking like it’ll be next year before BG-12 is available.


aprillabbe
5 years ago

like @scrambelina and @pottypete I haven’t take any DMDs (yet) and my neurologist is pretty understanding about it – we’ve talked a lot about it and about the threshold in my mind for when I would start them… it is different for everyone… I do the best I can with my diet, meditation, light exercise, low stress and marijuana (it helps a ton with the pain & stress)


ahuk
4 years ago

I cannot decide whether to start the drugs or not. Like aprilia I have set myself a target, if that is the right way of putting it, that when certain things happen I will bite the bullet and try them. The trouble is I keep moving the target! I’m not sure if I am in denial still or just a coward when it comes to needles. Any other cowards out there?

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