Newbie with Query

[PatrickL]

Hi All,

Looking for a little assistance. I've had psoriasis for the past 38 years on and off (mostly on for the past 16 years). After each level of treatment has effectively lost it's impact on my condition I progress to the next (topical, UVB, PUVA) and now I'm being lined up for a Systemics Clinic on the 15th December.

The drugs being mentioned are Fumaderm, Metatraxate and Ciclosporin.

What I'm looking for are positive stories in relation to Fumaderm and side effects. It would appear from reading peoples blogs that the side effects(gastro and higher frequency of infections due to lower immune system defences) are a given.

I would like to hear from people who have taken Fumaderm who experienced minimal side effects.

Thanks

Patrick

[Fred]

Hello Patrick to Psoriasis Club.

I won't get to involved as you will soon here from Jim and maybe some others who use Fumaderm, you may also hear from Caroline and Bill who use DMF the product of Fumaderm in different forms.

Personally I would avoid Methotrexate as it's poison in my opinion, but that's just me.

But for know here are some threads that may help.

Ciclosporine
Fumaderm
Methotrexate
Dimethylfumarates and Psoriasis

But you will get more answers from the Fumaderm gang I'm sure.

Good luck with your choice and please don't hesitate to start your own thread in Prescribed Treatments For Psoriasis once you have decided what to go for, as your input could be valuable to others.

Regards.

Fred.

[jiml]

Hi Patrick welcome to the club
You've come to the right place for positive news about Fumaderm
I'm afraid im out at the moment and working with my phone but if you return later this evening I will give you the good news about fumaderm and my opinion of methotrexate
Must go now but will be posting a proper reply this evening
Jim

[PatrickL]

Thanks for the quick responses...Look forward to hearing from you later Jiml
Big choices ahead.

Methotrexate was used as part of a chemo combo to combat my dad's cancer years ago. And although the cancer triumphed in the end, his skin was the clearest it ever had been in his life...

From what I've researched, Methx is scratched off my list..

Patrcick

[Caroline]

Patrick,

Very short, I have my mind somewhere else momentarily.

Avoid methotrexate and cyclosporine, they are both very toxic, pure poison.

The side effects of Fumaderm, DMF or Psroinovo are highly overrated by the dermatologists. By some strange effect they hardly have any knowledge on this point. For me it is not clear where they get this knowledge other than from hearing from others who also do not know.

There are side effects, but they are mild, mostly concentrated in the beginning when you are getting used to the drug.
As far as I know, there is no higher frequency of infections due to lower immune defense, I don't know of any study that would suggest this.

Go for it.

Caroline

[PatrickL]

Thanks Caroline. Appreciate the opinion. I'm always wary of medical opinion around meds. Will spend more time in the boards looking for a balance between the pros and cons
Patrick

[jiml]

Hi Patrick back home again now so can give you my take on Fumaderm
If you search Fumaderm in the search facility at the top of the page you will see many threads on Fumaderm and peoples experience of it. mine is.....
I was on methotrexate until just over three years ago I was put on that as the hospital would not give any more uv therapy ..... I found methotrexate cleared my psoriasis and kept me clear I tolerated taking it and the side effects of constantly feeling nauseous the day after taking it
It got to the stage that I started dreading the thought of taking them ( I used to take 10 tablets on a Monday ) I got really stressed about it and told the hospital I would rather have my psoriasis back than continue with methotrexate .......
They offered me two drugs Fumaderm or Acetretin luckily I choose the Fumaderm
I started with the starter dose of Fumaderm initial these are about 1/4 strength tablets and gradually built the dose up until I was at a point where the psoriasis was disappearing ... I was held steady on that dose for several weeks but I'm not sure how long and then slowly reduced the dose .... I am presently on three tablets a day with virtually no side effects. And an pretty much clear I had a bit of an unrelated health scare earlier this year and I developed a couple of small stubborn patches which have now almost gone

Side effects you will undoubtedly get some, some get them worse than others I can only tell of the ones that affected me
After a week or so of starting I started having very hot flushes they start with your head and work steadily down your body.... If you are expecting them they are not unpleasant.... I also got intestinal (stomach) cramps these were sometimes quite severe but usually only lasted ten to fifteen minutes....
If you can tolerate these there is no reason Fumaderm shouldn't work for you it has been used in Germany for decades with minimal side effects ... It is successful in 70% of people that start it and those that drop out it tends to be because the side effects are too severe
The side effects can be managed by taking the pills with a good meal and plenty of fluid ( you will note I didn't specify water) I like a beer or cider with my dinner in the evening and I usually flush mine down with that
If you have any questions I will be pleased to answer although if you are too technical I will ask caroline to help ( she is on a Dutch version of DMF)

[Kat]

Hi Patrick. I can't help answer your questions but wanted to say welcome.

[Grizzly Bear]

Welcome Patrick,

cyclosporine is awful.

I was on that & after about 7 months, they made me very ill.

Avoid at all costs !!!

GB

[PatrickL]

Again, thank you for your welcomes and support on this.

Jiml, Just re-read your detailed response on my query and have to say a big thank you. Have also been reading Carolines posts with interest.

Quick query on a small detail; in your experience how long do the hot flushes last? And do the intestinal cramps eventually stop after a few months or are they occur as long as you are taking the meds?

Patrick