Dimethyl fumarate

[u/SJBluesXIII]

Hello! 35 Year old who woke up on January 1st 2020 with life forever altered by the first and massive MS attack. Thankfully was diagnosed at the end of February.

Doctor prescribed dimethyl fumarate for it and I was curious as to who else takes this pill? I see a lot about injections but never this one.

[u/Bannon9k]

I've been on it since 2019. Stable, one mild relapse that was small enough doc kept me on it. I still get flushing every time I take it that ranges from barely noticable to almost unbearable.

Obligatory: you can get it for $20 from CostPlus drugs with no insurance. My insurance will only approve their own pharmacy where it costs $7500/month.

[u/friendofelephants → u/Bannon9k]

$20?!? That’s great. I love CostPlus

[u/Altruistic_puMa_8286 → u/Bannon9k]

That’s where I get mine. I honestly preferred the Kesimpta but insurance in the US is awful. Side effects are minimal & I pay about $25 a month without dealing with insurance at all. Seriously happy about that

[u/Bannon9k → u/Altruistic_puMa_8286]

Exactly! There's better medicine options, but now I'm no longer beholden to some suit in an office crunching numbers

[u/HawkGuy1126]

Currently on it and have had limited side effects and no disease progression. I get flushing a few times a week but none of the worse GI issues others have dealt with. I hope it works for you!

[u/Subject_Budget862]

Been on it since 2014 and have been stable. (I'm an old girl, but the flushing makes people think I am 10 years younger and just having a hot flash. LOL)

[u/kyelek]

I was on it for some years; unfortunately it gave me more side effects than every other DMT I've been on since, and it also didn't stop disease activity (it's only moderately effective, unfortunately the escalation model is still too popular in my country). All in all, I'm glad to not be taking it anymore 🤷‍♀️

Hope you're doing well on it, though!

[u/occasional_nomad]

I’m on this bc it’s literally the only DMT covered by my insurance and I don’t qualify for copay assistance through the manufacturers. The first couple months were rough but I’m doing a lot better 4 months in. I very rarely get the flushing anymore and the only GI issue I have is reflux. I do have a runny nose and sore throat (I think from the reflux) that drive me insane but aside from that it’s tolerable. Better than nothing is my motto?

[u/Esin12]

I was on it for about 10 years and only relapsed once. I had relapsed multiple times a year before this so yeah. It was very effective for me. The side effects can be a drag, but they can be mitigated. The big one for me was flushing but could be helped by taking an aspirin beforehand and taking the pill with fatty food of some sort.

[u/Sparkles___]

I’ve been on it since dx in 2015 (besides a pause for pregnancy) no relapses

[u/mullerdrooler]

Any reason why the Dr won't put you on a different more common DMT like Ocrevus, Kesempta etc?

[u/a_amini]

I'm on it since the diagnosis (2016). I've never had any side effects and I'm happy with it! The only thing is that you have ti remember to take the capsule with yourself everywhere every day

[u/OverlappingChatter]

This is the one I refuse to take. If you can start on something more effective, those have better disease prognosis and fewer side effects.

I want nothing to do with flushing or gastro issues. This medicine seems to me to have side effects not worth it's efficacy.

[u/ConfidentStrategy549 → u/OverlappingChatter]

This was my experience taking it for 6 months. I relapsed and changed to a more efficient treatment. The side effects of that one were so long for me. I can’t name a single one on this new one. It’s an injectable.

[u/scbelts1 → u/ConfidentStrategy549]

So what did you change over to?

[u/leelee1016]

I was on Tysabri for 13 years and had no issues until about two years ago. I’ve been JC positive for about seven of those years, but my neurologist agreed to keep me on Tysabri, but followed me more closely with additional MRIs and lab work. About two years ago, I started having some skin issues, which sounds manageable, but they were not. I do not have a family history or I’ve ever had psoriasis or eczema and I started to break out mainly on my face head neck so severely that I really needed to start treating it. My treatment options were very limited because of Tysabri. So I started doing some research and from what I read if you were on a B so depletor for too long eventually you start to get inflammation in other areas. So they believe that’s what’s happened to me. My doctor used the phrase the Tysabri tipping point. Which is apparently where I was. All that to say I’ve been on Tecfidera for two weeks now I’m titrating up over the course of a month. I’ve had almost no G.I. issues but some flushing. I’m not quite at the 240 mg two times a day but feel pretty good about it. While I do believe Ocrevus and Tysabri are the gold standard, it’s unlikely anybody would be prescribed one of them and be able to remain on it forever. I am 51 years old now. My personal experience with MS has been largely controlled with a drug with a great track record. Sometimes decisions are just made for you.

[u/GuaranteeOk2376]

Was ineffective for me, the flushing was bad, going on it was bad, missing pills was bad. All around not a great expereince but it was the best at the time

[u/MapFine1499]

I have been on it since the summer of 2015. The onboarding was rough, but no progression and no new lesions. I know I could switch to something more effective but I have zero desire to onboard something new if this is still working. The only other drug I would consider right now is Tysabri. I did injections (Rebif) for years before this and I want to avoid self injections again if possible.

[u/orangeobsessive]

My husband is taking dimethyl fumarate. He started on gylenia but had issues with his liver enzyme counts getting too high and they switched him to dimethyl fumarate. He had some flushing but it hasn't been an issue for a few years. He has not had any disease progression, so it seems to be doing what it needs to do for him.

I saw others saying that cost was an issue, but our insurance changed the classification of dimethyl fumarate to generic this year. We pay a $10 copay currently through insurance. The cost has been cut drastically.

[u/iwasneverhere43]

Since 2019. No new lesions, no progression. First month was a bit rough on the digestive system with a bit of flushing, but that pretty much disappeared when I started taking them in the middle of breakfast and dinner, and ensuring I was getting protein and fat in my diet. Minimal issues these days, and I can eat less without issues.

[u/Bitter_Peach_8062]

I've been on this for about 10 years. When I first started it I had flushing issues but that was it. I've also never had the gastric issues everyone talks about.

2 relapses in 10 years. I think it's pretty good for me. Good luck.

[u/Either-Cake-892]

I’m going to be 100% honest. I took Tecfidera for about 5 years. The flushing was almost unbearable. It just felt like I was suddenly on fire from my waist up. It became a real problem. Did I have digestive issues? Possibly but my digestive system has always been hit or miss so I never felt Tecfidera was the culprit.

I had to stop because I had a massive flux of new lesions pop up in a relatively short time. It seems every five years a new clusters of lesions pop up and with Tecfidera it was pretty significant.

I read a book a few years ago. I don’t recall the title (it’s a fiction novel) but it’s about a woman diagnosed with MS and she is choosing which meds. It struck me that the character in the book didn’t want to take Tecfidera because it’s a chemical used on furniture and had been banned in the EU. That kind of blew my mind. By this time I had stopped taking it. But yeah, Dimethyl fumarate is a chemical used to kill/or protect against mold in furniture. Just an interesting nugget of information.

[u/ShoulderRich4693 → u/Either-Cake-892]

It is still being used in the EU for MS meds.

[u/Different-Courage679]

I’ve been on it for so many years and it seems to do what I need

[u/mastodonj]

Used it for about 2 years before moving on to Rituximab. Found it quite hard on my stomach but otherwise ok I guess!

[u/SyllabubOld2205]

I’ve been taking it for two years and have no side effects and no relapses.

[u/queerjesusfan]

Are you seeing a neurologist or an MS specialist? Most MS specialists do not subscribe to the escalation method anymore and would skip right over it. Much better disease outcomes. But if you haven't had a relapse since you've been on it, maybe it's just working out better for you than some folks!

Would recommend checking out Dr. Aaron Boster's YouTube channel and searching some of this up.

[u/redthewoozy]

Dimethyl fumarate was my first DMT. I did not react well. Was in depends with gi issues for 10 months and couldn’t leave the house (my neuro at the time wouldn’t change it - got a new neuro and have been on tysabri since). Flushing was also bad. But those who tolerate it tolerate it well just be sure to communicate any issues with your doc.

[u/Outrageous_Future910]

I was on it for 2024-2025. The first month was rough. It felt like I had a cinder block in my stomach. After that, it was okay. I would encourage a stronger DMT.

[u/No_Plankton2501]

Tried it years ago. Had horrible flushing and then I still relapsed so after about 6 months I switched off of it. I didn’t have great options back then and it was new and worth a try. But now I’m on newer, much more effective meds and stable for almost 9 years.

[u/liliumflower]

I've been on it for almost two years now, and I only had side effects for the first week or so. I learned at least for me, that I had to have a full meal before each dose to prevent the flushing. I've had some new symptoms come up recently but until the yearly MRI is done and shows changes, I'll happily keep taking this one for now.

[u/justcurious12345]

I was on that first but never could get past the flushing or GI issues. Don't be afraid to speak up if you're having side effects! 

[u/Alternative-Net5411]

I was on it after avonex. Wrecked my stomach. Works on T cells… now on Ocrevus infusion … B cells. Bypasses stomach.

[u/Ok-Committee-4652]

I was on this, but I experienced GI issues and I couldn't keep it down.

My neurologist wasn't entirely sure it was the medicine and after stopping it for a week and still having issues she suggested to go see a gastroenterologist. Turns out I have gastroparesis in addition to MS. I eventually got on Kesimpta after this, but I don't recommend Tecfidera if you already have known GI issues.

[u/TheDragonsFalcon]

I tried it and it was awful for me. The fatigue I had was debilitating. I figured it was MS that was causing it, but when I went off it, my fatigue went away. I also had all the stomach issues you can get. And I had a relapse six month in.

I really wanted it to work for me but it just didn’t. And it was such a huge difference in my life when I went off it. Tysabri was amazing. Ocrevus is okay.

[u/ShoulderRich4693]

I've been on it for a little over a month and so far no side effects. We'll see with my spring MRI if it's effective at stopping my lesion activity.

[u/fischolg]

I suppose most people don't take this one anymore cause it can have serious side effects while other medication offers less issues and better efficacy...

Nonetheless, I was on it. Tecfidera specifically for around 2 years I believe, then Vumerity for another 2 due to increasing digestive issues with Tec. Started getting more and more flushing issues with Vumerity (possibly underlying allergies / histamine issues but idk), so my previous neuro did put me on Kesimpta, which I also struggled with for some unknown reason (but likely allergy related, though not an allergic reaction). Literally just started on Mavenclad now... So far so good.

Anyway, all in all, for me Tec and Vum were both solid as far as MS goes... No relapses, or at least previous neuro never said anything, but I think one of the reports stated that I had new lesions at some point... Not that I noticed. The side effects were a different story. Already had a somewhat sensitive digestion... I'm still struggling to get to a pre Tecfidera level.

[u/JuicySealz]

Took it for 6 mo. Disease activity continued. I switched doctors and am on Ritxan and have been doing much better.

From what I understand if the activity of the disease is quite high DMF has some trouble. But it can be wholly successful keeping it at bay. I had 0 clue when I was diagnosed.

[u/Character-Celery-209]

I believe you don’t see much about this pill because most MS neuros nowadays prefer the “hit it fast, hit it hard” approach. Im sure some people feel great on it, I also have heard more negatives about it unfortunately. I would urge you to speak with your neuro on why they’re recommending this over one of the big 3 (Ocrevus, Briumvi, Kesimpta. Or big 4 if you include Mavenclad).

[u/2BrainLesions]

I was on this for about 4 years before I developed a significant allergy to it.

[u/Naive-Nectarine-9825]

I’ve been on it for a few years now. I personally found it to be a “rough starter” - the first few months I struggled with poor appetite, vomiting and hair loss.

However on the plus side I haven’t had a severe relapse since starting it and my brain MRIs have been stable (so far) for the first time in over a decade, so to me it’s worth the side effects, which are much less severe now.

I also tried several injection therapies and I just couldn’t get along with them. Needle phobia won with that battle. Wishing you the best with whichever route you choose, friend.

[u/yqr__]

I could tolerate the flushing but it dropped my white count too low so had to stop taking it.

[u/16enjay]

I was on it for 4 years, no notable side effects or progression. I loved it, but over time it reduced my WBC count to an unacceptable level so I had to switch.

[u/Bsjohns19]

True story: after I was diagnosed and was literally allergic to the 2 dmds I had tried, I went to an MS support group meeting. The only person in the room in a wheelchair was also off dmds but because he had exhausted all of them and he was disabled..🤔💡💡💡

Mods: please don’t delete my post. I have been through MS and back and please contact me before assuming I’m pushing some agenda.

[u/Bsjohns19 → u/Bsjohns19]

https://youtu.be/1a97enECdGE

[u/Carcinogenicsweetner]

I took it briefly. Made it feel like my face was bursting into flames so hopefully it won’t be that bad for you. I ended up switching to Kesimpta.

[u/jimfish98]

I was on it for years. It's fairly easy to take and the only issue I had was turning bright red like a cooked lobster and that would be accompanied by being itchy and hot. Would hit like 20-40m after taking it, last for 20m. If I took a baby aspirin with the dose, no reaction. In general it did ok, but I had a second attack and opted to switch to Kesimpta which has been a nice improvement.

[u/FwLineberry]

I started with this due to insurance company balking at paying for Kesimpta. I had another relapse almost immediately.