Almost there

[jiml]

Just a thought Bassman and I'm probably way off, but could the Cysteine have actually made things worse ?

Don't get me wrong I'm not saying it is but questioning if it is possible that the Cysteine could be the reason for a flare up, sometimes our bodies are not to keen on change.

Also will you be telling your dermatologist that you have been taking Cysteine? I always think it's best to keep them in the loop as they may know more.

Maybe Bill will know a bit more about if Cysteine could cause a problem, but it was just a thought.

It's a good thought though Fred I hadn't considered that .... Food there for thought

[Bill]

Sorry to hear that things are getting worse for you. Just to clarify my own use of raw DMF, I guess that my current dosage at 810 mg a pop once or twice weekly is for maintenance. I have ~0.2% of my body covered with psoriasis (practically zip), and I wouldn't have a bar of the DMF again were it not for the arthritis, which appears after about five days without a dose.

Fred makes a very good point I think. Just because cysteine works for me is no guarantee that it will do the same for others. It may make things worse (although I doubt this), and as cysteine is innocuous, it is no big deal to cease it for a bit and see if things improve for you.

At least you live in a time when there are many treatment options for the disease, so if one thing does not work you are still spoiled for choice.

Cheers,

Bill

[bassman]

Well baseman I wish you good luck and hope you get onto something to clear you. Without damaging your organs again.
Do let us know the outcome and do keep us updated

Thank you Jim. Yes, have already had Hep of the liver from MTX, which is they took me off it, but it was after it had done its job, which was total clearance. I never had any obvious effects from the liver problem. I wouldn't have known if it hadn't been for the blood tests. Shows how important they are !

[bassman]

Indeed Psorinovo is not available in the NHS system. If you want it you will have to pay for it yourself.

I don't know how Joana in Poland has fixed it, but she is ordering it in the Netherlands. Maybe she pays is by herself of maybe the polish health system is a bit more flexible.

Heavy decisions for you as the MTX route is perhaps closed because of your liver.

Still the biologicals like stelara are there.

Definately cannot pay for my medicines Caroline, so NHS is my only option. And yes i agree, MTX is a heavy decision. I know it works, but i also know that i'm one of those who's liver will suffer, but having said that, the blood tests will pick up any problems before i notice its a problem myself

I've already been refused Biologicals, due to cost. I'm not in that percentage of people that have severe P, and Biologicals are reserved those who so much worse off than me, and i'm ok with that. Mine is so minimal, ( couple of small pink patches on upper left leg , its not raised and isn't that raw looking P, rather its just pink) that i shouldn't even be complaining.

[bassman]

Just a thought Bassman and I'm probably way off, but could the Cysteine have actually made things worse ?

Don't get me wrong I'm not saying it is but questioning if it is possible that the Cysteine could be the reason for a flare up, sometimes our bodies are not to keen on change.

Also will you be telling your dermatologist that you have been taking Cysteine? I always think it's best to keep them in the loop as they may know more.

Maybe Bill will know a bit more about if Cysteine could cause a problem, but it was just a thought.

Well to be honest Fred, i wasn't totally clear when i tried the Cysteine. The only reason i gave it a go was to try and take me the last mile to 100% clear, but it seems it just didnt have any effect whatsoever.  I believe the slight relapse, and in the great scheme of people with P, its not really anything to write home about, is just the nature of our P, and it just does this stuff at random.

I dont blame the Cysteine at all.  I've quit taking it though, because it should have been doing something by now as its been a fair while, and i'm not someone who takes drugs  for the sake of it, so i've knocked that on the head. It was worth the try for the minimal outlay.

We'll see what the Consultant says next month, though I suspect from her point of view, she'll see my current condition as a good result.  And of course she'll be right - its so much better than it was last year, but once you've had total clearance, you want it again.

[bassman]

Sorry to hear that things are getting worse for you. Just to clarify my own use of raw DMF, I guess that my current dosage at 810 mg a pop once or twice weekly is for maintenance. I have ~0.2% of my body covered with psoriasis (practically zip), and I wouldn't have a bar of the DMF again were it not for the arthritis, which appears after about five days without a dose.

Fred makes a very good point I think. Just because cysteine works for me is no guarantee that it will do the same for others. It may make things worse (although I doubt this), and as cysteine is innocuous, it is no big deal to cease it for a bit and see if things improve for you.

At least you live in a time when there are many treatment options for the disease, so if one thing does not work you are still spoiled for choice.

Cheers,

Bill

As you say Bill ( and i think i said as much in an earlier post ) that as far as P goes, its a lottery as to what works for some, actually working for others. I just might be different enough in my physiology from yourself that Cysteine has had no effect ( which is what i believe )

[jiml]

Well baseman I wish you good luck and hope you get onto something to clear you. Without damaging your organs again.
Do let us know the outcome and do keep us updated

Thank you Jim.  Yes, have already had Hep of the liver from MTX, which is they took me off it, but it was after it had done its job, which was total clearance.  I never had any obvious effects from the liver problem. I wouldn't have known if it hadn't been for the blood tests. Shows how important they are !

Hi Bassman
I've just read your other posts and from that I am thinking that the magic clearance you crave so much is something you may have trouble achieving, without further damage to your liver, and from my point of view, I would rather have the odd couple of psoriasis plaques, than chance more damage, your skin is not going to kill you but liver failure is, and kidney failure is very debilitating and life altering.
If it was me, and you are still a relatively young man ( compared to me) I would hold off on the biologicals as long as I could, for no other reason than I would keep as much in reserve for the future, whilst Fumaderm is giving you reasonable clearance, I would stick with it until it fails
Just my opinion
Jim

[Bill]

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

[Kat]

Well baseman I wish you good luck and hope you get onto something to clear you. Without damaging your organs again.
Do let us know the outcome and do keep us updated

Thank you Jim.  Yes, have already had Hep of the liver from MTX, which is they took me off it, but it was after it had done its job, which was total clearance.  I never had any obvious effects from the liver problem. I wouldn't have known if it hadn't been for the blood tests. Shows how important they are !

Hi Bassman
I've just read your other posts and from that I am thinking that the magic clearance you crave so much is something you may have trouble achieving, without further damage to your liver, and from my point of view, I would rather have the odd couple of psoriasis plaques, than chance more damage, your skin is not going to kill you but liver failure is, and kidney failure is very debilitating and life altering.
If it was me, and you are still a relatively young man ( compared to me) I would hold off on the biologicals as long as I could, for no other reason than I would keep as much in reserve for the future, whilst Fumaderm is giving you reasonable clearance, I would stick with it until it fails
Just my opinion
Jim

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!

[bassman]

Well baseman I wish you good luck and hope you get onto something to clear you. Without damaging your organs again.
Do let us know the outcome and do keep us updated

Thank you Jim.  Yes, have already had Hep of the liver from MTX, which is they took me off it, but it was after it had done its job, which was total clearance.  I never had any obvious effects from the liver problem. I wouldn't have known if it hadn't been for the blood tests. Shows how important they are !

Hi Bassman
I've just read your other posts and from that I am thinking that the magic clearance you crave so much is something you may have trouble achieving, without further damage to your liver, and from my point of view, I would rather have the odd couple of psoriasis plaques, than chance more damage, your skin is not going to kill you but liver failure is, and kidney failure is very debilitating and life altering.
If it was me, and you are still a relatively young man ( compared to me) I would hold off on the biologicals as long as I could, for no other reason than I would keep as much in reserve for the future, whilst Fumaderm is giving you reasonable clearance, I would stick with it until it fails
Just my opinion
Jim

Quite right Jim. I guess the need to be clear has come from the fact that i have been clear before.

I'll not go back onto MTX lightly, and the consultant will probably try to persuade me to avoid MTX, and like you say, live with the state of what Fuma has achieved, which is pretty good, it must be said