the end of ciclosporin....the beginning of fumaderm

[Caroline]

Hi everyone,

I can't believe that it's been over a year since I last posted!

Fumaderm was working brilliantly, I almost had 100% clear skin..... Then I got a lower respiratory tract infection, my lymphocytes virtually disappeared (0.18 I think at lowest) my neutrophils weren't much better (0.2) and my white count was almost non existent. Cue a week long stay in hospital, a further 6weeks off work essentially house bound, 12 weeks with no meds and a nice flare up, from the soles of my feet to the top of my head - only the palms of my hands are currently P free!

I'm now back on Fumaderm, done the three weeks on the initial tablets, a week of 1 120mg, now at the end of my first week of alternating between 1 & 2 tablets a day (equates to 1 & 1/2 tablets a day) last Tuesday my lymphocytes were at 0.87, hence the reason for the dodgy dose pattern, if they go to 0.5 I'll have to be taken off them again.

Oh yeah, my holiday was amazing, legs out and even a bikini a couple of days!

So that's the last year in a nut shell.

Hope everyone is ok and that no-one is suffering like I am at the minute.

MaDbEaR xx

Hello MaDbEaR,

Nice to see you back, with your information, though not so wonderful  
I guess that the dip in the lymphocytes was due to the infection, but of course the DMF of Fumaderm did not much good for that. 0.18 is way too low, sensible to stop Fumaderm and your lymphocytes will be back quickly then. Too bad of the flare up of course.

But also good to read that you are back on Fumaderm again. Do keep a very good eye on the lymphs, I always ask for all the values and put them in a spreadsheet for myself for historical reasons.

Did you know that the intermittent use of Fumaderm, of any DMF product, is working in its best?  It is better to take a higher dose on one day and nothing on the other day. This has two effects, one is that your body will react better on the dose, two is that in the intermittent day(s) your lymphs can recover. Our own Bill is working alongside this approach.

Hopefully the Fumaderm will do its work again, because a holiday in bikini is great of course , but I have hardly any doubts that it will.


Caroline