Posted Sun 26 Feb 2017 10.42pm by Betti
Hi has anyone been put on Fumaderm? This is my 3rd tablet after Apremilast and Acitretin didn't work due to bad side effects. I know side effects of Fumaderm but can't seem to find anyone who has been on it and if it works. Just into week 2 and psoriasis seems worse. Just wondering if this is how it progresses?
Posted Mon 27 Feb 2017 10.18am by Gareth
I've been on Fumaderm for a couple of years and swear by it. It's important to persevere through the first few weeks, where the description 'upset stomach' is a bit of a joke. (Let'sjust say I lost over a stone in three weeks). For that first few weeks, my psoriasis showed no improvement, but after that the improvement was incredible. My psoriasis - and my psoriatic arthritis- disappeared totally after about three months. Now, a couple of years on, the biggest area of psoriasis on my body is a single area about the size of a 1p coin. Stick with it for a few months. In the end, it might not work for you, but it's been wonderful for me.
Posted Tue 28 Feb 2017 6.12pm by Betti
Thanks for the reply. Have to say the stomach upset hasn't yet kicked in but I'm waiting on it!! Here's hoping it works, thanks. Glad it's helped you.
Posted Tue 28 Mar 2017 6.28pm by Mini me
I started fumaderm nearly six weeks ago things been going ok started on the fumaderm intital first increasing weekly for 3 weeks then on to the full strength on my third week of taking and the stomach cramps and hot flushes are really kicking in now seeing very little improvement but there is improvement please tell me it gets easier I'm taking 3 a day now will be seeing consultant on Thursday who will be increasing to maximum dose not looking forward to the next 6 weeks.
Really need people whom are taking this long term to tell me something positive as feel like give up with them, I'm frightened the side effect will stop me going to work what advice can anyone give me
Posted Thu 30 Mar 2017 11.21pm by Betti
Hi. I am on my 6th week but can't get passed 2 full strength tablets a day. Tried the 3 but was in toilet most of weekend, nauseous and stomach cramps. Like you I was worried about work so had to reduce dose. I have guttate psoriasis and would say the spots are slightly less red but not a great deal of improvement yet. I have hospital tomorrow so will see what Consultant advises me. Think I will be kept on it but worried about what dose he will advise. Good luck to us both
Posted Fri 31 Mar 2017 7.31am by Mini me
So as of this morning I have stopped fumaderm I can no long tolerate the side effects feel unwell all the time, stomach cramps and diarrhoea everyday this was taking 3 a day 120mg tablets was due to increase today just can't do it.
Psoriasis has a lot to answer for so depressed with it all 😂😂😂.
Posted Fri 31 Mar 2017 7.41am by Gareth
Stick with it! The stomach cramps, diarrhoea, etc lasted about two to three weeks with me, but then stopped as suddenly as it started and I've had no problems for the past couple of years. I was on three 120 mg tablets at the beginning, and my psoriasis more or less completely disappeared over the next few months. I'm now down to a maintenance dose of one tablet a day, and I'm staying psoriasis free.
Posted Fri 31 Mar 2017 9am by Mini me
Thank you Gareth for your advice, I am going to try and Persevere and think positive it hard when ya feeling horrible, it good to hear from someone who has great results thanks again
Posted Sun 2 Apr 2017 5.35pm by Betti
Hi I have struggled today with nausea stomach problems etc but have been ok for 2 days previously. Today I can see a difference in psoriasis. Not as firey and less itchy. I hope this is me turning the corner. Been on 3 tablets since Friday so I'm going to persevere with side effects to hopefully get rid of psoriasis. Keep going with it !!
Posted Tue 4 Apr 2017 8.46am by Mini me
So update as advised by my consultant I can take all the tablet together currently 3 raising to 4 next week so you get all the side effects in one hit, was slightly concerned about this method, consultant theory is spacing them out gives you side effects all day which yes I agree so thought I give it ago last night 3 tablets down the hatch at 7.30pm woke this morning feeling ok then boom 💥 it hit me stomach cramps horrendous and diarrhoea only lasted 30 mins then went, am hoping that is it as now I feel great and ready for my day will update tonight with how my day went wish me luck !!
Posted Fri 7 Apr 2017 6.01pm by Betti
How did you get on Angela? Still coping with it?
Unfortunately Im now off Fumaderm. Got a really high reading from a white blood count this week so investigations going on. Disappointed as thought it was beginning to help. At least ,for now, I've got no toilet issues.
Hope it works for you
Posted Mon 8 May 2017 5.34pm by Richiemaxx
Hi all. I have been taking Fumaderm for about a year now. Amazing results and so happy with the way my skin is now. It took about 2 1/2 months for any noticeable improvement but once the improvement started it rapidly worked. I got no stomach cramps or anything like that. The only side effect I get is headaches. They come for a week or two then go away for about a month before starting again.
The biggest problem I have is actually getting the medication. Each time the hospital put a prescription in to the hospital pharmacy I get a call from the pharmacy to say they are having problems getting the Fumaderm from the supplier. So it takes about 2 weeks to get it in stock. Luckily I lowered my dosage myself so always have some in reserve.
Hope this helps any questions.
Posted Mon 8 May 2017 9.55pm by Mini me
I am now up to 5 tablets daily and starting to see good signs of improvements, I am around 16-18 weeks in of starting them.
My side effects are few and far between now still from time to time get stomach cramps, I now take my tablets all at night time instead of spacing out over the day, getting any side effects first thing in morning which I can cope with, really hope the improvements continue. I never have any problems with getting the medication from my local hospital I live in the north of England !!
Posted Tue 9 May 2017 10.43am by lburch2017
Hi started my fumaderm last Thursday, having hot flushed once a day, have been on this drug before and it cleared all my psoriasis up for the first time in 25 years!! stomach cramps only once (so far!!) on the 6th week I am meant to be on 6 tablets a day - watch this space (if I can get off the loo :)
Posted Tue 13 Jun 2017 7.07pm by Kirstmcp
After weighting up all the options with my lovely dermatologist I've decided that Fumaderm is worth a shot. I've had psoriasis for more than 25yrs and it has gotten worse as the years have gone by. I've tried loads of topical treatments, 5 lots of PUVA and bath PUVA which I liked but you can only fry in a box for so long. Acitretin which was awful, when my hair started falling out and I had no eyelashes enough was enough. Lately I've been taking 15mg methotrexate orally but my psoriasis crept back after initially clearing a bit. I had two chest infections in succession which interferered with regime and so chose to stop to help my immune system recover a bit. At the moment my Psoriasis is the worst it has ever been and I'm hoping Furmaderm will be the answer to my prayers. I work for NHS who have a naked from the elbow down policy so there is no where to hide or cover up when I'm at work but I notice the looks I get from people. I've been trawling the internet all day having made my decision to start and overwhelmingly the chat seems to be you'll probably have some nasty stomach problems and some flushing but if you power through and can tolerate these side effects the the results are remarkable. The prospect of having the odd glass of wine is a delight after two plus years of no alcohol when on acitretin and methotrexate so happy days.
Posted Wed 14 Jun 2017 4.29pm by Mini me
I can honestly say I still suffer with the odd stomach cramp and diarrhoea, I have adapted my tablet regime to suit me and my working life I still continue on 5 tablets a day taken all at once and I am almost psoriasis free. saw the consultant 3 weeks ago who has prescribed some steroid cream for the stubborn areas hips for me which has cleared it up in this time, for the first time in a very long time I can wear short and strapped top and not feel embarrassed.
I will say at the beginning was the worse thing ever nearly
Gave up several time but hearing the success Stories on here have made me carry on good luck keep us updated, if ya need a mood we are here xx
Posted Mon 26 Jun 2017 1.36pm by Kirstmcp
So I got my medication this morning, bloods done last week and good to go, but have to admit I'm terrified to start.
I've read through all the bumph and it says take after meal but I've read in other forums people have taken them with food during meals? What works best for everyone else?
Posted Mon 26 Jun 2017 10.33pm by Mini me
I always take after my evening meal, have on the odd occasion taken on a empty stomach very rare, not advised bad side effects. Hear some people take with a yogurt which coats the tablets Lessing the side effects.
Different for everyone.
I am after 25 year psoriasis free started fumederm 5 months ago best thing ever can now wear the clothes I wish.
At the beginning side effects can really put ya off but stick with it, I only have the odd time now good luck keep us updated on you progress x
Posted Mon 26 Jun 2017 10.51pm by Gareth
So glad that Mini me stuck with it, and that fumaderm has had the desired effect. I'm staying pretty psoriasis free after a couple of years. Stay with it, Kirstmcp, and you'll be amazed at the improvement after your system settles down. I take mine after breakfast every day and find this works fine for me.
Posted Mon 10 Jul 2017 12.15pm by Kirstmcp
On to 3rd and final week of initial dose and have to say it's all been ok so far. Only thing I've noticed is psoriasis patches are bright red. Not expecting much improvement till few weeks into 120mg tabs but still hopeful I might get to wear something sleeveless before summer is gone.
Posted Mon 10 Jul 2017 11.01pm by Mini me
Its the best feeling ever to be able to wear short sleeves and even shorts glad ya doing ok, I am hoping when see consultant next week he will put me on a maintenance dose but will have to wait and see keep me posted on your progression.
Posted Sun 23 Jul 2017 10.35pm by Kirstmcp
2nd week of 120mg tabs so taking one in evening and one in morning and all going very smoothly, no side affects to speak of and slowly skin is changing, no new scaling just smooth patches which are still noticeable but improving. Something is definitely working :)
Posted Tue 25 Jul 2017 11.34pm by Kirstmcp
Spoke too soon! This morning was the first real sign of any side effects. Flushing and unpleasant prickly feeling/pins and needles across face, upper chest and arms. It passed after about 45 mins but was on waking approx 7 hrs after taking evening tab? Is this normal? After that I delayed morning tablet till lunch time and had bit of red face this afternoon but nothing like this morning.. itchy itchy skin this evening but I'm trying to convince myself these changes are something happening to improve psoriasis. Kind of dreading tmrw in case it happens again, may have to get up earlier to avoid going to work with face like skelped backside, as if having weird skin isn't bad enough!
Posted Tue 25 Jul 2017 11.47pm by Mini me
I always take all my tablets at nighttime 8 pm so any side effects occur doing night so most of time i am sleeping so don't notice I still taking 5 tablets a day, skin still doing great obly side effect now is diahorra some morning x
Posted Mon 28 Aug 2017 9.04pm by Kirstmcp
Just a quick update, just finished first full week of 6 tabs per day, skin has really improved in the last 20 days so much so I would consider wearing something sleeveless if the weather was better. I've had no reAl problems with side effects to speak of and now can take tabs without food. All scaling and redness has gone, skin no longer dry and feels smooth, hasn't been this good since can remember. Due to have bloods done again in about a week but no problems on that front to date either. I'm so glad I stuck it out and would encourage anyone else starting out to stick with it if you can.
Posted Wed 4 Oct 2017 4.04pm by smondle
I started taking Fumaderm last year but due to severe gastric side effects have only been on top dose (2x 120mg three times daily) for about 3 months. Has anyone else that they are now randomly allergic to certain foods? When I was still on Methotrexate I tried cutting out all nightshades but found it made no difference so went back to eating normally, but now I find that eating tomatoes gives me horrendous diarrhoea. No other nightshades have this effect on me, and I also can't eat at Nando's without a similar effect. I wonder if with Nando's it is because they boil the chicken to cook, then re-heat on the grill with the flavouring when you order so it is something with the reheating of the chicken? It's definitely not the spice because I have no problems with hot curries.
When I avoid foods that I find to cause me problems I have no side effects whatsoever so it is a life saver compared with Methotrexate!
Does anyone have any suggestions on what else I can avoid/make sure to eat to help keep my stomach stable?
Posted Wed 20 Dec 2017 10.21pm by rosita
hi im on Fumaderm, im on the 120mg 6x a daily. The side effects can be bad but if you can handle them you will see a difference in around 8/10 weeks. i swear by themx
Posted Wed 20 Dec 2017 10.39pm by smondle
I’ve now been on 6x120mg for about 5 months and my psoriasis continues to improve daily. I was about 80% covered with my last flare up but am down to just my torso now which is great! Unfortunately the gastro side effects didn’t go away for me and I have drug induced IBS. I’ve been in contact with a nutritionist who has given me some great advice and eating what the fads call an ‘anti-inflammatory’ diet I’ve not had any problems for 1 month now! Amazing after the last 15 months of constant diarrhoea im happy that gluten free clean eating is working for me and there’s worse things in life that eating lots of roast dinners!
It’s taken a long time to get here for me but I stuck with it and I’m so glad I did.
Posted Thu 8 Feb 2018 4.52pm by Jim
Hello all from your cousin in the US. I am about to get on a clinical research program for this type of drug. At present it seems to be available only in Europe - and especially in Germany I was told. I have found this to be most interesting. I have just stopped another clinical 5 year trial for Taltz, and injection that worked for about two years then lost effectiveness. I have a choice of going to another currently available biologic but was told about this clinical trial that I will be eligible for. I find some here with the side effects kind of scary. I wonder if switching to a very high fiber diet would help?? One of the scary parts of this trial is that I could get a placebo instead of the real drug. I am currently undergoing terrible rebound effect since coming off the Taltz. If what you all are saying about this - the side effects - I should be able to tell if it is a placebo pretty quick I assume.... What I really want to know if how fast does this work? After having clear skin for 2+ years this is just awful to have to go through all over again!
Posted Sat 10 Feb 2018 10.55pm by Toodlesoodles (edited Sun 11 Feb 2018 3.56pm by Toodlesoodles)
I'm on this. Currently on the 6th week which is 3 full strength tablets a day. Not seen any improvement to my skin yet but also had absolutely zero side effects which I'm amazed about. Fingers crossed I start to see a difference in the next 2-3 weeks.
Posted Sun 11 Feb 2018 12.19pm by Kirstmcp
I started taking fumaderm way back in June last year, my skin is 99.9%. I didn’t have too many problems with side effects and only occasionally now will get flush if forget to take two tablets in morning and postpone till later in the day. My bloods recently have shown lower lymphocytes but not low enough to consider stopping so I made the decision to reduce from 6 to 4 tablets everyday which I’d talked about previously with my dermatologist and it’s not affected my skin at all. I hope to reduce further in the coming months to get to a maintanence level. I’d encourage anyone embarking on treatment regime to stick with it the benefits at the end far out weight the side effects I’ve had psoriasis for more that 25years and this is the best skin I’ve had in all that time.
Posted Sun 11 Feb 2018 3.55pm by Toodlesoodles
Kirstmcp, how long was it after you started the tablets did you start to see an improvement in your skin?
Posted Sun 11 Feb 2018 4.45pm by Kirstmcp
Toodlesoodles, probably about 3 weeks into 120mg tables so by time I was taking 3 or 4 per day started to notice improvement but probably took a good few months on 6 tabs per day before skin completely clear.
Posted Sun 11 Feb 2018 6.13pm by Toodlesoodles
Posted Sat 17 Feb 2018 9.37am by Linnie
I’ve been on ,fumaderm had 100 % clear then my blood counts weren’t so good. I decided stupidly to come off them and cream go on holidays etc. That’s worked for 4 yearsand suddenly it’s in huge flare up mode. So I’m back on them and struggling to get past 2 knowing full well the side effects will get better knowing full well I will be clear soon enough ... and yet at 5 am this morning I could have cheerfully put the whole lot in the bin. They are the harshest drug to cope with until you see the benefits and get some relief. You have to be tough and you have to make a joke of it otherwise you’ll just give in. I’m moving onto 3 next week if it kills me.
Posted Sun 18 Feb 2018 10.05am by Mini me
I have been taking 5 at one time I am 99.9% clear now, still have the odd little spot but the tablets have changed my life, I am more confident wear what I wish. I am now reducing the dose to hopefully have a maintenance dose, currently taking 3, the side effects can get you down, I no long have any side effects which is great, I have forgotten every so often to take them oh boy I know it, stick with it everyone so worth it in the end !!!
Posted Thu 1 Mar 2018 11.39am by Toodlesoodles
I'm now on my 10th week of fumaderm and have just completed the first week of 6 tablets (x2 240, 3 times a day) and I've reached this point without any side effects which I'm amazed about.
Unfortunately I've not seen any improvement in my skin and I am starting to get worried that fumaderm might not work for me. The leaflet says results are normally seen after 5-6 weeks of starting the full strength tablets and from what I've read of people's experiences on psoriasis support groups, it took about 2 months for the late responders. I'm at that point now and worried that I have not seen any improvement, even to the very small spots of psoriasis I have on my arm that aren't thick.
I had such high hopes and optimism about fumaderm and now I'm feeling quite low. Light therapy didn't work at all for me either.
Posted Sat 10 Mar 2018 4.13pm by Paula
Hi I'm exactly the same I have been on 6 full strength for 4 week and I am into week 12 and have had no side affects,. Yet showing very little improvement. Really disappointed was hoping this was going to work for me after ciclorsorin,. Then acetretin which made all my hair fall out! Is this slow progress normal. Help!
Posted Sat 10 Mar 2018 7.02pm by Linnie
Try cbd oil and childs farm moisturiser
Posted Sat 10 Mar 2018 8.10pm by Toodlesoodles
Paula, were you given a time frame by your dermatologist of when you could expect the tablets to start working?
And how was your experience with Cyclosporin? Cleared you nicely but then you had to come off it I'm guessing?
Posted Sat 10 Mar 2018 8.27pm by Paula
Hi, no I wasn't given a time frame, have just picked up a 3 month prescription last time I had my bloods done,. Fumaderm has stopped me getting new patches, just doesnt seem to be clearing the old, although the patches do seem quite flat, which is what first happens after light treatment.
Ciclorsorin was fine, I was taking this a year and 100℅ clear although did seem to have a cold quite a lot as it lowers the immune system. I was taken off this as they don't like to prescribe it for to long which is when I started acetretin,. 8 weeks in to this all my hair fell out, which was traumatic as you can imagine.
Was really hoping fumaderm was going to be the drug for me, especially as people do say they have taken it long term, even running into years. I never experienced any side effects either, not even one stomach ache!
Posted Mon 12 Mar 2018 7.29pm by Toodlesoodles
Hmm, if the patches appear flatter and you aren't using any steroids on your skin then perhaps the tablets are starting to work for you? Unlike my case where I can 100% say there hasn't been a smidge of improvement. I have read a few people say they didn't see improvement for 3 months which is still 3 weeks away for me but is the point you are at. Perhaps like I said though, it's starting to work for you? Please keep me updated and I'll keep my fingers crossed for you.
I was told I'm not suitable for methotrexate and I refused acitretin because of the awful side effects (the hair loss you mention being the main one). Spose if it comes down to it I'll give Cyclosporin a try if for no other reason I think they'll want me to try another treatment on this level before progressing to the next tier of meds. Just don't know if watching your skin clear and then seeing it all come back when you are inevitably taken off the Cyclosporin is better or worse than just to carry on and deal with your skin as it is..
Posted Fri 16 Mar 2018 8.23am by Gareth
Fumaderm is a consultant-only, prescription medicine for a reason. It should not be sought or provided like this. Administrators - is this a site for trading medications? Pav Baker - if you think you need more Fumaderm, see your dermatologist.
Posted Fri 16 Mar 2018 8.24am by Linnie
Posted Fri 16 Mar 2018 8.26am by Gareth
By offering unregulated Fumaderm, you could be causing severe medical problems. That would be really kind.
Posted Fri 16 Mar 2018 8.40am by Linnie
Life isn’t as easy as always having enough because you missed an appointment or you lost some or whatever reason.
I’ve ran out of things before and a fb group I’m on share because we all facing the same disease. It’s about helping each other in this world not being spiteful he’s already on fumaderm and I have too many.
If by some crazy chance he’s a nutter wanting to trial it he’s in for a nasty shock isn’t he because no one in their right mind would take them unless they had to.
But if admin or you or anyone else wants to kick me off the group because I want to help then so be it, if someone wants to rap my knuckles then so be it.
I’m sure I’ll live with it,
Posted Mon 19 Mar 2018 8.26am by Paula
So just finished week 12 and must say last couple of days I have noticed a marked improvement. Plaques much flatter and definitely started to fade. It's looking like the fumaderm is starting to work.
How are you getting on?
Posted Mon 19 Mar 2018 10.53am by Toodlesoodles (edited Mon 19 Mar 2018 11.44am by Toodlesoodles)
That's very good news. :) So glad it appears to be working for you.
No change for me yet I don't think.
Can I ask, what date exactly did you start the medication if you remember? I started Thursday the 4th of January. And have you followed the dosing exactly? I have to admit that I got a bit annoyed/upset (at the thought the tablets aren't working) during the 5 a day full strength week and skipped up to 6 tablets midway through that week which I assumed to be harmless as side effects aren't an issue for me. So I will have been on full strength for 3 weeks this coming Sunday. Do you know how long exactly it is you've been on them?
Also if you don't mind me asking, how severe is your psoriasis and what areas do you have it? My legs are the worst area for me in terms of coverage and plague thickness. I have some on my arms and lower back but they are all very small spots that aren't thick.
Posted Mon 19 Mar 2018 12.15pm by Paula
Yes started 20th Dec,. And have stuck to the dose, although I was only taking 5 a day up to end of week 10 as my appointment was cancelled and was only give a emergency prescription for week 8 to 10 which was only 5 a day, started six a day at week ten and will be week 13 this week. Only.last couple of days seen a significant change.
My legs are the worst also, quite bad on my lower leg and also my arms but more backs of my arms, I don't tend to suffer with any on my torso luckily, and a little on my face around my eyes and eyebrows,.
I haven't got as much as usual I had just finished a full year of ciclorsorin so hadn't had a full flare up, and although the fumaderm hasn't cleared up why I have it has seemed to stop new patches .
Posted Wed 28 Mar 2018 11.56am by wymlen
I had palmo plantar psoriasis and had treatment with Fumaderm in Germany. It was very effective and cleared the psoriasis in 10-12 weeks. However, I believe it compromised my immune system as 18 months after this I developed lymphoma and later shingles followed by PHN which is a constant pain in the affected area. I now have palmo-plantar psoriasis again but will not risk taking any immunosuppressant medication. That leaves few options for an effctive treatment but am now looking for a methotrexate gel than can be applied topically.
Posted Wed 28 Mar 2018 2.30pm by Toodlesoodles
how is it going? you still having improvement with the fumaderm? I'm 4 and half weeks into 6 a day full strengths now and still seeing absolutely no improvement. just isn't going to happen by the looks of things.
Posted Wed 28 Mar 2018 4.07pm by Paula
Hi,. Yes do think it is clearing but very slowly,. Just starting week 14, does seem to be fading and getting flatter. Yet same as you, not sure it's going to completely clear,. Although I'm trying to rain optimist if.
Posted Sat 31 Mar 2018 1.19pm by Paula
Hi Toodlesoodles,. So woke up this morning to a bit of a flare up, of what appears to be guttate plaques,. All over my legs,. So seriously p****d off right now, certainly looking like fumaderm isn't working for me! Extremely sick to death of psoriasis! You had any improvement yet?
Posted Sun 1 Apr 2018 6.46pm by Toodlesoodles
hey Paula. nah still no improvement for me. got my next dermatology appointment in a couple weeks so I will see what she says. hoping I can go onto the next tier of meds but I feel I'm going to have to try methotrexate or Cyclosporin first.
sorry to hear about the flare. hopefully it's just temporary blup9 and the fumaderm is working like it looked like it may be doing just before.
Posted Thu 12 Jul 2018 3.21pm by jocko
My dermatologist is refusing to prescribe Fumaderm that I have been on for some time. It is the most successful form of treatment I have ever tried. I don't understand how they can stop this treatment for no medical reason. Maybe it's my age as I have just turned 65. Hope not.
Posted Thu 12 Jul 2018 5.05pm by Gareth
Fumaderm is being/has been withdrawn from prescription in the UK. Your dermatologist should have replaced it with a prescription for Skilarence - essentially the same stuff, but with a different name and approved by NICE as a treatment for psoriasis (Fumaderm was never approved in the UK). I changed from Fumaderm to exactly the same dose of Skilarence just over a month ago, and there has been no deterioration in my psoriasis.
Posted Thu 12 Jul 2018 5.43pm by Mini me
I went to see my dermatologist Yesterday and he still prescribed it to me, and no view or it been stopped, only drug that had ever worked for me I am now only taking one tablet a day to maintain I am 99.9% clear.