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

[Fred]

the weather changing it's only going to get worse!

Jim is right, don't think of the negatives. Think of the your holiday, a positive.

Negatives are easy for anyone to achieve, positives however are harder to achieve but the rewards are better.  

[Kat]

the weather changing it's only going to get worse!

Jim is right, don't think of the negatives. Think of the your holiday, a positive.

Negatives are easy for anyone to achieve, positives however are harder to achieve but the rewards are better.  

But Jim and Fred are correct. It is so easy to think of the negatives (been guilty of that myself lately too!) Thanks for the reminder guys!

I hope you have a good holiday and that things do start to improve soon for you!

[MaDbEaR]

Hi guys,

How much does fumaderm suppress your immune system? I've heard a cold for a week or so and I think I've developed a chest infection from it, (currently sat at the Drs waiting to see if I can get in the see a Dr to find out!) I don't know if its because my immune system is weaker, or because my asthma is getting worse in general after the mtx and ciclo have completely left my system (asthma disappeared while on mtx and stayed gone while on ciclo!)

Maybe its just from my smoking, or maybe I'm just worrying over nothing and I've just got a horrible cough that's hurting my lungs. I hate being ill - as if I don't have enough to deal with anyway!!

MaDbEaR
Xx

[jiml]

Hi MaDbeaR that's an interesting question, but as far as I know, as long as your blood levels are all good your immune system should not be compromised , do you know your white blood count? The lymphocytes should be between 1-3 they can go under this mine went as low as around .6 but it never caused me to be susceptible to infection, in fact since being on Fumaderm I have only had the odd old cold

So although I'm not a doctor just a sufferer I would doubt if the cold is related to taking fumaderm and I doubt if your GP will have much idea to be honest
So as long as fumaderm is doing its job on your skin, and your bloods are good , my opinion is carry on.

[Caroline]

There is totally no proof that DMF makes you more vulnerable for infections or viruses.
Personally I don't have a flu more that others, basically even less than my colleagues.
But... If you have the feeling that it might make a difference, it is no problem to lower your number of pill during one or two weeks, after the cold is gone, than you can increase gradually again.

[MaDbEaR]

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

[jiml]

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

Hey it's great to see you back ......is it really that long ....well if things were going well I can't say I blame you not rushing back ...seems like the year went well for you, and I'm glad you were able to get your skin out

What a shame they let your white blood count drop so low .....were you having monthly blood testing? Was it a sudden drop?

I suppose it's water under the bridge and at least your bloods are recovering and you are back on Fumaderm. I hope your blood levels continue to rise so you can increase the dose to get clear again

Thanks for the update do let us know how it continues to work .....and no I'm not suffering at the moment but can feel your pain

Jim

[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

[Bill]

Sorry to hear of your trials MB. I too dread colds as they always seem to progress to chest infections. Now I just go on antibiotics asap. Fortunately Jim and Caroline have escaped this. Low lymphocytes are unlikely to be a problem, and the recent changes in treatment parameters seem very precautionary. Low neutraphils however are a serious problem and put you at great risk of serious infection. Was it made certain that Fumaderm was the sole cause?

I treat myself with 800 mg doses a couple of times a week with great effect, which is about 500 mg less than your weekly dose. As Caroline pointed out it seems to be nice to my white cells as well. My treatment is experimental, so I post for interest, not as guidance. I can say that taking l-cysteine powder has helped greatly with the gastric symptoms. Usually I dose an hour before my dmf then again before I sleep. I have also been supplementing with B vitamins since my last blood test, so I will find out whether this has made any difference in another four weeks or so.

I hope that things work better for you this time.

Cheers,

Bill

[Fred]

Hello MaDbEaR good to see you again. The years seem to be flying past, but I thought it was just me.

Thank you for taking the time to come back and update, I'm sure your information will help others. Don't worry about it being a year, even a little update is appreciated and there will always be someone here should you need us. We have some members that only post when things are bad, but we have no problem with that as we are here to help.

Good luck with the Fumaderm.