Fumaderm advice wanted

[jiml]

Hi Jim and everyone.

Tried to message you Jim directly but the computer wouldn't let me. Hope you are well.

Onto 4 tablets now but getting some nasty side effects. Stomach cramps and diarrhoea mainly. However, no stomach cramps today as of yet.
SKin not clearing as quickly as I had hoped. Does it suddenly clear or is it a gradual process and when did you notice a difference. I am beginning to
think it will never clear. Some days it looks better and others it doesn't.

Cathy xx

Cathy, the effect is gradually. At a certain point you will remark that there is a change. This will take some time, while the change is taking place you can perhaps slower build up, or keep it steady. Then just keep it steady for some months and gradually the psoriasis will become lesser.

Caroline

Hi Cathy sorry your pm didn't work I got an empty one but thanks for trying  
Nasty side effects are a nuisance but the positive is that it's  an indication that the medication is active on your system, you will soon start to see some positive effects I'm sure, then you will begin to believe that the side effects have been worth it ..

. But as Caroline says if they are too much to bear take a step back or don't increase as fast because we are all different and there is no rush, the fact is although it seems a slow process you say yourself some days you begin to see a difference,....... when it does begin to work, with me I began to clear quite quickly after it started,
you have come this far I'm sure you will begin to reap the benefits soon now, and with the advent of summer you will have another assist with the sun
Stay strong and come back often
Jim

[Kato]

Hi everyone,

Sorry its been AGES since I was last here...I hope everyone's doing well!

I have no idea if I am putting this in the right place either as this is literally the only forum I have ever used but I am looking for some advice and can't find anything anywhere as usual!

So...months ago, I finally got my Fumaderm dose down to 360mg a day and my skin stayed clear for months on this dosage. Everything was going really well and my stomach calmed down too.

However, a couple of months ago my skin suddenly started to flare up again (lots of new small patches, getting redder, itchier and flakier by the day). I have not had any infections or illnesses which could have triggered this. I immediately went back up to 480mg a day but it doesn't seem to be making any difference and I am still seeing new patches every day. Needless to say the stomach issues have returned too so I visited my GP who has prescribed Omeprazole. Unfortunately, my GP has never heard of Fumaderm so was unable to offer any advise. She is writing to my consultant but this will take time and my next appointment isn't until January.

I'm extra frustrated as I'm supposed to be running a marathon in April but can't train right now due to the stomach problems. Slightly concerned Fumaderm is no longer working so well for me! :-(

Has anyone had a similar experience?

Pls let me know if you can offer any advice?

Thanks heaps

Kath

[jiml]

Hi everyone,

Sorry its been AGES since I was last here...I hope everyone's doing well!  

I have no idea if I am putting this in the right place either as this is literally the only forum I have ever used but I am looking for some advice and can't find anything anywhere as usual!

So...months ago, I finally got my Fumaderm dose down to 360mg a day and my skin stayed clear for months on this dosage. Everything was going really well and my stomach calmed down too.

However, a couple of months ago my skin suddenly started to flare up again (lots of new small patches, getting redder, itchier and flakier by the day). I have not had any infections or illnesses which could have triggered this. I immediately went back up to 480mg a day but it doesn't seem to be making any difference and I am still seeing new patches every day. Needless to say the stomach issues have returned too so I visited my GP who has prescribed Omeprazole. Unfortunately, my GP has never heard of Fumaderm so was unable to offer any advise. She is writing to my consultant but this will take time and my next appointment isn't until January.

I'm extra frustrated as I'm supposed to be running a marathon in April but can't train right now due to the stomach problems. Slightly concerned Fumaderm is no longer working so well for me! :-(

Has anyone had a similar experience?

Pls let me know if you can offer any advice?

Thanks heaps

Kath

Hi Kath you are in the right place. This is your Fumaderm thread and you ask away . I will tell you what I can ....at the moment you are on 4 tablets a day so there is room to increase the dose , usually a phone call to your dermatologists secretary will get you an answer, basically you need to know if kidney and liver functions are good, if your lymphocyte count is within the normal range between 1-3
If these levels are good there is no reason not to increase the dose. To 5 a day, then after a week even up to 6 a day .... But don't do it until you have cleared it with the dermatologist ...
He does not really need to see you your doctor can do the blood tests and relay them to the hospital .

When I dropped my dose to low (3) a day my psoriasis started to return and I upped my dose twice to get clear again. I went up to 4 a day and it took weeks to get back clear...
We are all different and need different strength meds to work. I would certainly up my dose ... It should not increase the side effects .
Watch what you eat and take yogurt with the tablets

This is all I can think of but I'm sure others may have different opinions. So good luck , and ask away
Jim

[Caroline]

Hi Cathy,

I had started to answer earlier, but got interrupted.

Of course I do understand that you don't want to up the dose, because of your belly problems and the impossibility to train then.
Personally I do recognise it a little, I mean the reaction that it comes back. During the summer I lower my dose to 5 en some times even 4, but right now I found that my fingers and feet started to hurt again, so I had to go back to 6. It does not help immediately. It takes a few weeks before I am again freed from mostly the pain in my fingers.

I do know that in some, rather few, cases, DMF stops working, but in most cases people have to stop because of the side effects where you are suffering also.

You could try to follow the strategy of Bill, see his thread, in the sense that you concentrate in taking the dose higher on certain days and the skip one or two days. That has a better effect on the psoriasis and reduces the side effects to only that days. The other days you can follow your marathon training again.

As you perhaps know I only have very limited side effects, because I have a slow release version and no additives like in fumaderm.

Futhermore also Jims advice was correct.

Hopefully you this gives you some more insight of what you might do or discuss with your dermatologist.

Let us know how you go!
Caroline

[Bill]

Just dont be too much a stick in the mud. If there is one thing evident on the forum it is that different things work for different people and at different stages of the disease. I seem to be going into a remission. I take an 810 mg DMF dose weekly and l-cysteine daily. I still use my topical goo. Would this work for others? Unfortunately it does not seem to work for Bassman. And if it did not work for me I would have to vary it.

Cheers,

Bill