Almost there

[bassman]

I agree with you there, Bassman. After reading how cysteine was doing nix or maybe less than nix for you I rethought the sense of my own use of it and cut down the dosage by over half. After a week or two I noticed an increase in redness and upped the cysteine dosage again. I had a positive response within a few days, so my guess is that if you dont notice anything within a week it probably will not help you. With less cysteine I also had more side effects from DMF despite taking more cysteine with my weekly dose, so now I am of the view that the reduction in side effects does not relate to any direct interaction of cysteine and DMF.

What an annoying illness it is, but by your description you seem pretty good. My journey on DMf has been anything but an even grade, although the skin is just about clear now. At least you dont have to deal with psa. That is something else.

Cheers,

Bill

Yep, didnt seem to do anything. You can check how long i was on it from my posting on here the day i got the capsules ( the bag of Cysteine powder is now unopened )
There was over 2 months supply of capsules if i remember rightly, and never saw any changes. Well i did get a slight fading of pink patches, but i now believe thats just random P activity and nothing to do with the Cysteine

I'm very lucky in the great scheme of things. When i see people with severe P it almost makes you cry. And yes, i dont even suffer with PSA.

I have very little to complain about, but i suppose you cant feel others pain and anguish, you only know your own, and deal with it accordingly

[bassman]

Of course we all have to make our own decisions, but I so agree with Jim on this one.  My mother had hepatitis from a blood transfusion and it's not something you want to make worse.   I'm not trying to sound morbid here, but although my mother appeared fine for years, it did catch up with her.  I'm not sure what your options are, but surely the doctors would want to stay away from drugs that could cause further damage!

Indeed, i wouldn't want liver damage, but they caught the liver problem because i have regular blood tests, and i didn't have any liver problem side effects, so i'm guessing it was just the start, and quite mild. They said my liver would recover anyway.  I'm assuming it has because its been a couple of years now and still not had any problems, liver wise

[jiml]

I don't know how much psoriasis you have Bassman, but seriously if it's good enough to live with on Fumaderm and no sign of it getting worse, I would stick where you are

It's easy for me to say, I assume you are almost clear like me. For me that means I have a small stubborn patch on my left elbows out the size of a 5p and the other spot on my right hip about the same size they do not flake just stay red ? I am happy to show with such a little on my body, I'm happy swimming and sunbathing, shorts and tee shirts all summer

If I had more and was uncomfortable and saw more plaques developing then I would maybe look to change

[bassman]

Same as you Jim. Practically clear, couple of small pink patches ( no plaque any where at all ) on one leg. Thats it

Perhaps you're right. Stay as a i am.

The consultant has nothing more to offer me, since i've been on Acitretin, Cyclosporin, MTX and only one of those was any good. I've been refused Biologicals and anything else like Psorvino is not available on the NHS

[jiml]

Same as you  Jim.  Practically clear, couple of small pink patches  ( no plaque any where at all ) on one leg.  Thats it

Perhaps you're right.  Stay as a i am.

The consultant has nothing more to offer me, since i've been on Acitretin, Cyclosporin, MTX and only one of those was any good.  I've been refused Biologicals and anything else like Psorvino is not available on the NHS

Stick with it and stay positive and hopefully over time the few bits you are left with will reduce further, mine almost disappeared in the summer ( not that we had much) And the bits I have left remind me every day that I still have it..
Hopefully you may in time be able to reduce the dose, which will give you a buffer in case you have a flare up,

Good luck which ever course you take

[bassman]

Its probably the right thing to do Jim. I get little or no side effects from Fuma, well apart from some weird sneezing, so maybe i should just ride it out and hope it can take me the last mile.

[Bill]

Agree with Kat and Jim. It makes no sense to take a dangerous drug to get rid on a couple of spots. I dont think the consultant could justify prescribing mtx medico-legally. So maybe it is a good thing that you cannot buy mtx on eBay, although you can buy some dmards there without a prescription. That will be my next line of experimentation. Note however that my intention in doing this is to maximise the benefit and minimise the harm to myself.

Cheers,

Bill

[Kat]

Of course we all have to make our own decisions, but I so agree with Jim on this one.  My mother had hepatitis from a blood transfusion and it's not something you want to make worse.   I'm not trying to sound morbid here, but although my mother appeared fine for years, it did catch up with her.  I'm not sure what your options are, but surely the doctors would want to stay away from drugs that could cause further damage!

Indeed, i wouldn't want liver damage, but  they caught the liver problem because i have regular blood tests, and i didn't have any liver problem side effects, so i'm guessing it was just the start, and quite mild. They said my liver would recover anyway.  I'm assuming it has because its been a couple of years now and still not had any problems, liver wise

Just be very cautious. I'm glad that you haven't had any problems but this one is a bit close to me as I said my mother lived with it for years and a lot of those years were with monitoring and no problems (she also had no side effects for many years). Now I'm not trying to compare the two at all only, like others, caring enough to voice caution.

Plus as you age, seems doctors like to prescribe an anti inflammatory quite often (at least it's been that way for me!) which of course are a concern for liver damage over time. So try to think ahead on what the future might hold for you in the way of future meds too.

[Bill]

The more I think about this the sillier it is. I'm a little cranky now as I am nearly seven days without DMF and the PsA is starting to kick in. The arthritis is debilitating to me to the tune of a few hours a day. Basically my spine seizes up and needs to be stretched out a few times a day, which in itself is a slow and painful process. Yet what I feel is nothing compared with what many on this forum are going through.

In contrast the skin trouble is nothing. I could not imagine how a few spots could cause any significant concern, except perhaps with the hours of pointless ogling that might result for a vain teenage princess. Yet a grown man with a couple of tiny spots and maxed on fumaderm first wants to sprinkle more DMF on his breakfast cereal, then wants to go back on mtx, which he copes with better than anyone I have ever heard of.

Maybe I am just very cranky because I am in a fair bit of pain now, but the whole scenario sounds crazy.

Apologies,

Bill

[Caroline]

The more I think about this the sillier it is. I'm a little cranky now as I am nearly seven days without DMF and the PsA is starting to kick in. The arthritis is debilitating to me to the tune of a few hours a day. Basically my spine seizes up and needs to be stretched out a few times a day, which in itself is a slow and painful process. Yet what I feel is nothing compared with what many on this forum are going through.

In contrast the skin trouble is nothing. I could not imagine how a few spots could cause any significant concern, except perhaps with the hours of pointless ogling that might result for a vain teenage princess. Yet a grown man with a couple of tiny spots and maxed on fumaderm first wants to sprinkle more DMF on his breakfast cereal, then wants to go back on mtx, which he copes with better than anyone I have ever heard of.

Maybe I am just very cranky because I am in a fair bit of pain now, but the whole scenario sounds crazy.

Apologies,

Bill

Hey Bill,

Are you by any chance of Dutch origin? This is way to direct you know.

But he has a point there Bassman. If you are doing well on DMF, and have only tiny spots, then stick to it leave it there. From my personal experience you may be lucky that you don't have psa. So I can understand why Bill reacted in a Dutch way.

And Bill, I will get you for that "vain teenage princess" ...

But hope that the DMF will be able to control your PsA very quickly again. Personally I always are getting very scared when I am feeling something in my hands or feet. I feel soo lucky to be in the one and only country in the world where one can get my medication and where there are at least some doctors and dermatologists who understand quite much of psoriasis.

Caroline