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bassman Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 129
Threads: 3
Joined: Sep 2015
Gender: Male
Location: Oxfordshire
Treatment: fumaderm
#101
Sun-04-10-2015, 14:14 PM
(Fri-02-10-2015, 16:21 PM)mataribot Wrote: I have inverse as well and not much has worked for it. Tnfs do not work, but Stelera work some. My areas where my inverse was has transformed into postulate psoriasis and I am now using multiple steriod creams.

I found creams or gels of any sort to be almost useless over the last 26 years.  Due to how the NHS works, we will be given the cheapest stuff first, and that means the multitude of creams and ointments out there, of which there are many, and i've been through most of them, but it wasnt till many years later that i eventually got anything serious like tablets.

If i had been given tablets first time round, i would have had much better success, plus i wouldnt have been wasting NHS money by being given useless applications year after year
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bassman Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 129
Threads: 3
Joined: Sep 2015
Gender: Male
Location: Oxfordshire
Treatment: fumaderm
#102
Sun-04-10-2015, 14:18 PM
(Sat-03-10-2015, 01:28 AM)Bill Wrote: Hi Bassman,

I think of the disease in terms of redness, thickness, scaling and extent. I dont know if there are differences in the pathology for the different types of psoriasis. I only have a few spots now, all under 5mm across, flat, and with little or no scale and redness. In total the area might amount to a few fingers, and the disease has retreated to elbows, knees, one shin, and a bit behind the ears. Getting rid of the redness seems to be the key to getting rid of the psoriasis in my case.

Cheers,

Bill

I'd say Bill, that i was kind of similar in that respect, even the small red bits are pink, and thats my lot.  Just about every type of tablet has  destroyed plaque, with MTX the only one to go the full monty and clear me 100%, but for the fact that i had to come off MTX due to liver problems, i'd still be on it
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Quest4Cure Offline
As long as there is breath there is life. Life is a gift!

100 + Member I Just Cant Stop !
Posts: 639
Threads: 19
Joined: Aug 2014
Gender: Male
Location: US
Psoriasis Score: 13
Treatment: light treatments and a variety of many others.
#103
Mon-05-10-2015, 06:52 AM
(Sun-06-09-2015, 18:58 PM)Fred Wrote:
(Sun-06-09-2015, 15:16 PM)bassman Wrote: Wow, you cannot edit your own posts for spelling or typos?

Yes Caroline is correct, unfortunately we have had problems with spammers wanting to spoil a safe place for people with psoriasis, so we have had to introduce a lot of obstacles to make it not worth their time in joining. Once you have made 5 posts you get 5 minutes to make an edit, but I'm always willing to make edits for you if you wish. You can either send me a PM with the edit, or post it in the [Group Specific] board and I will get onto it as soon as possible. But please don't let our anti spam measures put you off, you will find us a friendly bunch and we want to keep Psoriasis Club safe and spam free.

Yes trauma can be a trigger, there's an interesting study about trauma and psoriatic arthritis here: Increased risk of psoriatic arthritis after physical trauma

As for psoriasis liking scar tissue, you may be interested in this thread: What is Koebner reaction ?

Good post Bassman, I look forward to your updates.  Thumb

Fred.

The Keobner Effect is my biggest problem with this disease. Very interesting you brought it up I was just posting about it earlier on another post. It's mush easier to google psoriasis Keobner effect than for me to try and explain it.
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bassman Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 129
Threads: 3
Joined: Sep 2015
Gender: Male
Location: Oxfordshire
Treatment: fumaderm
#104
Mon-12-10-2015, 15:28 PM (This post was last modified: Mon-12-10-2015, 15:28 PM by bassman.)
I have to say that its bad news for me.    Sad

I'm starting to go backwards, despite the Fuma and Cysteine combination.  In about 5 weeks, i'm back at the Churchill dermo hospital for one of my 3 or 4 monthly visits with the consultant, and as has already been discussed with them last visit, it could be MTX again

I'm going to ask her if i can increase the Fuma firstly, before anything else.  I know 6 a day is supposed to be the limit but I get very little in the way of side effects that maybe i can increase the dose.

If she says no, then its looking like MTX again
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#105
Mon-12-10-2015, 19:21 PM
(Mon-12-10-2015, 15:28 PM)bassman Wrote: I have to say that its bad news for me.    Sad

I'm starting to go backwards, despite the Fuma and Cysteine combination.  In about 5 weeks, i'm back at the Churchill dermo hospital for one of my 3 or 4 monthly visits with the consultant, and as has already been discussed with them last visit, it could be MTX again

I'm going to ask her if i can increase the Fuma firstly, before anything else.  I know 6 a day is supposed to be the limit but I get very little in the way of side effects that maybe i can increase the dose.

If she says no, then its looking like MTX again

Sorry to hear that it's not working well for you, that is a shame, you say even with the cysteine as well the psoriasis is getting worse ... I don't think your dermatologist will agree to going above the maximum dose that the manufacturer has stated,
It will be a shame for you as it had been working so well .... Do you think this could be just a temporary flare up ? Have you had more stress than usual, or a traumatic experience that could have triggered it again.
I think when you first wrote you were fairly clear on fumaderm but you wanted total clearance, now it's getting worse,

I think Caroline will have something to say about the additives in fumaderm which may be what makes it dangerous to exceed the dose ... Myself I'm not sure
Good luck with the dermatologist and do keep us informed what decisions are made.... or if the psoriasis recedes before the visit

I'm just dreading the day it stops working for me, I'm hoping because I am on a lower dose 4 a day that I still have room to manoeuvre
Jim
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Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,518
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#106
Mon-12-10-2015, 19:39 PM
Indeed Bassman, as Jim says, the dermatologist will not raise above 6 x 120mg of fumaderm.  Because above that dose the additives become too toxic.  

With me personally it took 3 months before the DMF was working sufficiently.

What are the options for you?
1) back to MTX, that is an obvious option. If it works for you and if you don't feel too bad with it, why not.
2) try to convince your dermatologist to make a switch to Psorinovo, there is no problem in ordering it, and it has the advantage that you can increase to a higher dose. Assuming you keep an eye on your lymphos. This is the expensive route, as I think your insurance will not cover it.
3) follow the cheap route of Bill. You know that Bill uses 8 x 120mg every three days.
4) maybe there is a fourth, of course there is a fourth, but not with DMF.


Caroline

And of course I feel very sorry for you that you don't have the results you expected.
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bassman Offline Author
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 129
Threads: 3
Joined: Sep 2015
Gender: Male
Location: Oxfordshire
Treatment: fumaderm
#107
Mon-12-10-2015, 20:52 PM
Thanks Jim, and yes i expect the consultant to decline the increase dosage.

Its difficult to tell with its a flare up, or the Fuma has reached its limit.

I know i'm expecting total clearance, and thats not possible for some, but for me it has already been that way with MTX, so i'm after the same thing, its just that Fuma seems to have not got me there, even with the Cysteine

Thanks Caroline - i think in previous discussions, it was told to me that Psorvino is not available on UK NHS system, so that will not be an option for me.

Its been a while since i was on MTX but i felt ok on it, in myself. It was only the blood test that revealed a liver problem , so they took me off it. But i had been clear
so i guess my options are shrinking.

I still have 5 weeks left, and if nothing gets better by the time i go back to the hospital, then I may as well stop the Cysteine, and then see what the consultant says about things.
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jiml Offline
100 + Member I Just Cant Stop !

100 + Member I Just Cant Stop !
Posts: 47,972
Threads: 357
Joined: Oct 2013
Gender: Male
Location: Norwich England
Psoriasis Score: 3
Treatment: Skilarence 5x120mg a day
#108
Mon-12-10-2015, 21:09 PM
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
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Caroline Offline
You must hurry if you ever want to catch a chicken...
*
Forum Helper
Posts: 26,518
Threads: 113
Joined: Nov 2011
Gender: Female
Location: In between the tulips
Psoriasis Score: 3
Psoriatic Arthritis Score: 3
PQOLS: 4
Treatment: Got back to DMF slow release
#109
Mon-12-10-2015, 21:27 PM
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.
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Fred Offline
I Wanted To Change the World But Got Up Far Too Late.
Moderator
Posts: 66,958
Threads: 3,888
Joined: Aug 2011
Gender: Male
Location: France
Psoriatic Arthritis Score: 1
PQOLS: 1
Treatment: Bimzelx / Coconut Oil
#110
Tue-13-10-2015, 12:11 PM
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.
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