High dose of Fumaderm

[Caroline]

My 76 year old husband has been on Fumaderm since the Summer, building up the dose to 120 x 2 x 3 which is a total dose of 720. In fairness, his psoriasis is now under control. But he does have other serious health issues. He is very anaemic and has just been started on iron pills which do seem to be causing digestion problems. He was put on this high dose late September and I sort of assumed we would get an appointment with the consultant, and providing it was under control, start weaning him down to keep him on the lowest possible dose that would control the condition. (I have no medical knowledge but this is what we do with cats when we are trying to give 'quality of life' with potentially potent drugs if used long term,  such as steroids and metacam)
My question is how dangerous is Fumaderm long term at such a high dose? As anyone else been on this dose long term? He also had a very bad cough and we phoned 111 - our surgery closed for staff training. The doctor phoned him back sent him to A and E saying that the Fumaderm could have caused a drop in the white blood cells and he needed a blood test within 2 hours. He went and 9 hours later was discharged as ok.
He is having blood tests twice monthly.
He has very little appetite and his weight is now 7st 10. He has had a endoscopy which aws clear apart from gastritis and also has had a recent colon scan - waiting results. I do know that the GP is worried about potential internal bleeding but the anaemia started way before the Fumaderm so probably is not connected.
Thanks for reading - still worried that this product is not licensed in the UK and wonder if the trials included people over 65? A lot of trials do not....
Helena

Hello Helena,

On the one side good to hear that your husbands psoriasis is under control, on the other side it is very odd that he is so powerless.

As far as I know the product is licensed in the UK. The fact that a product is possibly not licensed says nothing about the safety or security of a product. Fumaderm is already in use in Germany for at leastt 30 years with very good results. That means that there are long term positive and real life results far outreaching other current medications like the biologicals as they are not yet that old.
Basically if your husband has good blood values, and he has, there is nothing against continuing the use. Blood tests twice monthly is excellent. Fumaderm can cause a drop in the white blood cells, but if you build up slowly it most cases this drop will be minimal. The trick is in the slow build up.

There is one "BUT" to Fumaderm. It is a combination preparate, it contains a combination of salts (for protection of the stomach), monoethylfumarate and dimethylfumarate. That is why there is a maximum dose which your husband currently has. Unfortunately the only working substance is the Dimethylfumarate.
The monoethylfumarate is totally obsolete and there are signals that it is not good for your kidneys.
Maybe you should have your husbands kidneys extra researched. The creatinine level of the kidneys should at least be on a normal level.

On your question if you can use this for long... well yes, myself I am already more than 10 years on a Dutch equivalent which contains only the DMF (not the MEF), and I am doing very well. From a patients community over here I know that lots of people over here even use higher doses than your husband, that is possible with my kind of DMF, and that for many years.
I use the same dose as your husband does and feeling very good. There of course are two differences, I am a lot younger and my meds are slightly different. You could perhaps think of trying, though it will not fall under the NHS.

Caroline