Joining in.

[Angie]

Hi ,

I have been stalking this forum for quite a while now, following most threads , particularly Fumaderm, which when I get time I will start a post or add to a previous one.

My history of P - diagnosed about 31 years ago. First told it was warts on my elbows and treated with wart paint! (Can't remember the name) . Usual creams, ointments, hospital stays, puva, UVB , diet, holistic, magic creams from internet (which were full of steroids - obviously claiming to be natural). Aceitrin, cyclosporine, methotrexate and now Fumaderm.

Didn't really start on the tabs until November 2013 when my P became erythrodermic . Had tried Aceitrin previously but hair fell out rapidly. Thanks to that, I never wanted another tablet again.

November 2013 had no choice but to accept cyclosporine as 90% coverage and legs had ballooned due to inflammation . Got out of hospital (in time for Xmas) , on and off cyclo , ( was told due to the amount of UVB I had, had in past I would be unable to take cyclo for any length of time). Next was Mtx , hated them, side effects horrendous. Had a fight on my hands to get them to offer me Fumaderm, which I am currently taking.

Not sure of my psoriasis score . For about 28 years I lived with my psoriasis being severe and would get UVB 3 months of the year so I could go on holiday. Rest of time I just got on with it. My turning point was when my p became erythrodermic and I was told I have used up my lifetimes ray's, I decided to go down the tablets route.

So here I am, hoping to get some advice .  On 6 Fumaderm from yesterday and my skin is showing a little improvement - not much.  Certainly less active , flatter and less red, but still all over.  Side effects - not so good. Probably better leaving the details for the prescribed threads. Was really hoping for notable improvement 9 weeks in.

Anyway good to be here, looking forward to hearing your views.  And Hi GB , how you doing ?

Angle

[jiml]

Hi Angie and a big    to the forum you have probably noticed if you have been stalking us    that we are a friendly bunch that are always happy to exchange views on what works and what doesn't .. It's a great place to come for reassurance if you get a wobble or are unsure, we can only speak from personal experience, and there is a lot of that on here........
Regarding your position ... You haven't mentioned the severity of the side effects, but you say you have had some.. You are now on 6 tablets a day the maximum dose, and you are beginning to see differences in your skin... I'm  sure what you are seeing is the start of good times........9 weeks in is about right I think if you read the literature I think there is a mention that at 16 weeks you should see a big improvement . So I'm imagining you being steady on 6 tablets for a while yet and your skin will show a lot of improvement in the coming weeks
What I will say is if you are tolerating the side effects now they will get less as time goes on, I barely get any now apart from flushing
It is a slow burner drug it won't work quickly ..... But it will keep working on a reduced dose hopefully for years if you read mateychucks post below he's been on it for 7 years I have been on it over 3 years
RE: Fumaderm
In Germany it has been used over 30 years with a great deal of success
I hope this helps

[Kat]

Hi Angie and Welcome!

I'm sure you'll be hearing from other members on Fumaderm. I have no experience with it myself but others here have had great success with it and I hope it works well for you.

[Caroline]

Hello Angie,

Welcome to the board.
Fun that you already a bit know us. And very nice that you decided to join in.
Max level of Fumaderm that should start giving some relieve, I am hoping for you.

Have fun on the forumm just like we mostly do. We have threads where we are serious, but also lots of just for fun threads.

Caroline

[Fred]

Hello Angie    to Psoriasis Club.

Nice to see you have stopped stalking and started talking.  

I see you mention GB I assume you mean Grizzly Bear so you already have someone here that you know, but don't hesitate to dive on in you will find us a friendly bunch.

Regards.

Fred.

[Angie]

Hi Jiml, Kat, Caroline and Fred.

Thanks for the welcome and replies.

Jim re the side effects, some days are better than others but most days the cramps and visits to the bathroom are 2-3 times. I don't seem to have any pattern with so many hours after taking them, or what I eat with them as to when the side effects kick in. The cramps range from slight to pretty sore, feeling the need to bend over at times to help with the pain. In love with my hot water bottle! Ha . I spend a lot of time in the bathroom, usually at ungodly hours. My stomach or should I say intestines wake me anything from 4.30 am to the latest 6.30am. Once I have visited the bathroom 2-4 times , I'm better, until the next time.  Flushes come and go , first few weeks they actually felt like they were burning my face, especially where the P is on my face, but now just slightly warm, nothing major.

I've been reading on here for sometime and thanks to the input of the outcome with Fumaderm , I am quite prepared to crawl about the place if need be for good results and the fact most say the side effects will subside.

The literature I have with the tabs do not give me an indication of when an improvement should be seen. Having asked my derm she says give them 3 months. Now I'm in 9 weeks, although only 2 days on maximum dose , I'm hoping something happens soon, would hate to think I'm going through this for nothing .

Kat and Caroline, thanks I hope they work too.  

Fred, yeah stopped stalking now, will try and join in.  Yep I do mean Grizzly Bear, came across GB previously and his wee pictures always made me smile.

Well thanks very much again.

Angie

[Troll]

Hello Angie

[Grizzly Bear]

Angie my wee fellow suffering P lassie.

Thank goodness you found this place !!

Did you all have a great xmas & new year ?


I hope your P is better Angie ?

Mine is getting worse sadly. Never mind, hoping my doc has some news later on today ????

Can't believe you've been lurking you naughty lady you lol

But, now you are here, i'll let you off lol

BIG bear hugs for you my friend

GB

[Angie]

Hello Troll

I'm waving back, not sure how to work the emoticons.

I'll learn.

Angie

[Angie]

Mr Andy

I've missed your sense of humor!!

I'm good thanks, well as good as it gets eh! Yep all fine and glad to see you on here.

Angie