Title: Severe Psoriasis
Post by: peterb on June 18, 2003, 02:18:50 PM
| Had to make an emergency appt this morning to see GP, has I was worried about my P, and my Appt for Derm isn't till next Monday. Saw GP, my has turned erythrodermic , and the GP explained that I will probably land up on Mtx and PUVA. Dont fancy the Mtx, anybody gone through this, as I am looking for alternatives to Mtx? It still doesn't take away from the fact,, that is Derm would have seen me 2 months ago when GP wrote, it probably wouldn't have got to this stage. |
Title: Re:Erythrodermic Psoriasis
Post by: Val on June 18, 2003, 04:09:16 PM
Oh sorry to hear that Peter :hug:
As you know this has never happend with my P so can't offer anything other than support and prayers. :(
I hope someone lese can give you the information you need. Please take extra care of yourself.
:bighug: |
Title: Re:Erythrodermic Psoriasis
Post by: juliep on June 18, 2003, 08:23:03 PM
Hi Peter
as you know i couldn't have Mtx so the derm said Neotigasun would be my first line treatment. I'll find out tomorrow if they are going to take this route.
I forgot to ask you - had you been out in the sun before your p deteriorated into erythrodermic - the sun, as you know, is a trigger for my gpp - but the symtoms following exposure to the sun are similar to what you are experiencing - hot and reddened skin, painful and extremely itchy - almost like a severe case of sunburn, then blistering occuring under plaques full of creamy yellow exudate, where the plaques are flat they just ooze a sticky exudate. The plaques always shed the psoriasis build up, even if its very thick and underneath is pale pink with an open pore type texture (at its most risk of infection like this).
My joints always ache more, i get terrific back pain and have great difficulty sleeping - i call this my active phase.
hope noone has just eaten prior to reading this :shake: |
Title: Re:Erythrodermic Psoriasis
Post by: Alison on June 19, 2003, 07:04:48 AM
peter am really sorry and angry >:( that theyve let you get into this state, so unfair of them to keep puting your appt back.
sorry i cant comment on the mtx , wasnt ami on this :-\ , i only have good things to say about puva for me but dont mean to dishearten you but (always a but) , some people at the hosp whose p like yours has been allowed to get so bad , it hasnt really helped them at all.
maybe thats why they are combining your treatments together to give it that extra kick.
take care , really do hope this works for you :) |
Title: Re:Erythrodermic Psoriasis
Post by: juliep on June 19, 2003, 01:37:53 PM
| No Neotigasun yet - but i agreed to try dovabet to try and reduce the plaques on my hands, arms, feet and legs. I am to use it twice a day and still apply exorex at night - well, lets see what happens - remembering that dovanex did nothing for me!! ??? |
Title: Re:Eurythedermic Psoriasis
Post by: ami on June 19, 2003, 03:08:38 PM
| Hope it works for you the dovabet Juile, me it just made it worse. |
Title: Re:Erythrodermic Psoriasis
Post by: juliep on June 19, 2003, 07:13:34 PM
| ami - i applied some today at about 1pm - its actually softened the very tough plaques incredibly well -but now the plaques are beginning to itch like mad. Did you experience this? The itching didn't start for a good few hours after application |
Title: Re:Eurythedermic Psoriasis
Post by: Nick on June 19, 2003, 09:08:11 PM
Sorry to hear about the E P Rock,
As we discussed on the phone, E P can be treated with less serious treatments than MTX, let's hope that the derm can help you our with some good PUVA.
And Ju, that's good news about the Dovobet softening up the plaques for you :hug: Let's hope that you don't suffer this summer like you did last year :hug: At least the Dovobet (being a mix of Dovonex and Betamethsone) should have mor eof a punch. Hopefully it will clear you up, but the rebound can be bad if you come off it too quickly. Take care with it Ju :bighug: |
Title: Re:Eurythedermic Psoriasis
Post by: Bri9801 on June 19, 2003, 10:58:26 PM
Sorry to hear that the old *P is giving you guys a bad time :hug:
Hopefully it gets better real soon |
Title: Re:Eurythedermic Psoriasis
Post by: ami on June 20, 2003, 12:40:57 AM
Juile| ami - i applied some today at about 1pm - its actually softened the very tough plaques incredibly well -but now the plaques are beginning to itch like mad. Did you experience this? The itching didn't start for a good few hours after application |
|
Juile I could not stop itching but also it turned very red & sore I stop using it. But all being well there is mild itching and derm said this should cease which my did not it went other way. Hopefully your skin is just getting use to it. I do hope it works well for you juile :) |
Title: Re:Eurythedermic Psoriasis
Post by: Alison on June 20, 2003, 11:30:16 AM
hi peter
i tried to get some info off of the puva nurses 2day about eurythedemic , she didnt have any info :-\ to give just txt books........sorry
she did say that most cases of this do require admission , not what u wanted to hear i know :-X
i mentioned you proberbly will be haveing puva and mtx , she said at the norwich hosp they wont mix the two but was at a phototherapy teaching thing at cardiff hosp and that they do mix the two there , hmm yes i know that i replied.
now its got me curious as to why 1 hosp will combine the treatment and others wont :-\? , she said its just down to whatever derm?
sorry did try n find some info but failed :-[
|
Title: Re:Eurythedermic Psoriasis
Post by: Alison on June 20, 2003, 11:31:32 AM
Title: Re:Eurythedermic Psoriasis
Post by: peterb on June 20, 2003, 01:02:15 PM
Alz
Thanks, if I have to in it will probably be the Cardiff Hosp you are on about anyway. |
Title: Re:Eurythedermic Psoriasis
Post by: Nick on June 23, 2003, 08:54:20 AM
| :cf: for Pete today at the Derm appointment |
Title: Re:Eurythedermic Psoriasis
Post by: Alison on June 23, 2003, 09:02:38 AM
:cf: for Pete today at the Derm appointment
|
|
did send u an i.m peter , but il say it again ;)
good luck today :) |
Title: Re:Eurythedermic Psoriasis
Post by: fishs on June 23, 2003, 09:10:34 AM
:hi:
Yes .. Hope all goes well Peter ..
Will be thinking of you .all the best mate..
:up:
Fish |
Title: Re:Eurythedermic Psoriasis
Post by: Celery Peach on June 23, 2003, 09:55:28 AM
| Wishing you all the best Peter :-* I hope it goes well today :hug: |
Title: Re:Eurythedermic Psoriasis
Post by: peterb on June 23, 2003, 03:12:40 PM
| Well been to see Derm this morning, turns out GP got it wrong about EP, but I have very active P at moment, the Derm didn't mention about going into hospital. He said, he has to slow down my skin turn over, which is twice as much as usual P. So i've had no choice to start a course of Neotigason to slow this down. I have to go back in two weeks to see him, and he reckons I should see a 25%+ improvement. I hope this starts to work, I have been really sore last few days. Well i'll keep you posted. |
Title: Re:Eurythedermic Psoriasis
Post by: Nick on June 23, 2003, 03:33:14 PM
Hi Rock,
Well it's good to hear that the Derm has taken control of the situation :up:
A classic case though where even the best willed local doctors can get the diagnosis wrong. Not that it's his fault, he's not used to seeing this sort of thing, but it sounds like your Derm is on the case.
That's not bad that he has started you on Acitretin. At least the potential side effects are less than full blown MTX or Cyclosporine. Although liver will still need to be monitored at least you won't have to worry about stopping drinking :hug:
I've been doing some reading up on Acitretin and as always our friends at DermnetNZ has some good info
http://www.dermnetnz.org/dna.acetretin/acet.html
So how do you feel about being put in the drug then Pete? |
Title: Re:Eurythedermic Psoriasis
Post by: peterb on June 23, 2003, 06:30:05 PM
| Well Nick, I have to admit I would rather not be on it, I did have this in the late 70's for a while. But my skin is in overdrive at present, and I dont think I have much of a choice. At least the drinking side of it wont bother me. I am that sore that I have to slow my active P down. At least it is one of the safer options out of the stronger P treatments? |
Title: Re:Eurythedermic Psoriasis
Post by: Nick on June 23, 2003, 07:06:15 PM
I guess whne you're in a situation like you are then it would have to be the better option to go for.
It really puts things in perspective though. I still reckon I'm lucky with my P. My old faithful has returned on my leg - it's a patch about 2 inches wide and it itches like crazy. I've even started up on the Dovonex to try and get it under control again. It had gone into remission for about 4 months before, prior to that it has always been there.
But at least I haven't had to suffer like many of the family here.
So how often are you going to be using the acitretin? |
Title: Re:Eurythedermic Psoriasis
Post by: fishs on June 23, 2003, 10:04:34 PM
:hi:
Hi Peter .
Thanks for updating us ..
lets hope you get some relief soon ..
Fish |
Title: Re:Erythrodermic Psoriasis
Post by: Val on June 23, 2003, 11:59:17 PM
:hi: Peter,
Thanks for the update.
Very pleased to hear it's not as bad as first thought. Also very pleased that the derm is going to keep an eye on you.
Please do as you're told and use that stuff until your system has been kick-started into healing. :hug:
We're thinking of you. :bighug: |
Title: Re:Erythrodermic Psoriasis
Post by: Celery Peach on June 24, 2003, 08:27:20 AM
:hi: Peter
I'm so glad to hear that you dont need to go into hospital. :cf: this treatment works quickly for you and you start getting some relief. I hope you mentioned to the Derm that it wouldnt have got so bad, had you not had to wait so long to see him >:(
Take care Peter :-* |
Title: Re:Eurythedermic Psoriasis
Post by: peterb on June 24, 2003, 01:08:59 PM
I guess whne you're in a situation like you are then it would have to be the better option to go for.
So how often are you going to be using the acitretin?
|
|
Well Nick, I am on it every day, I suppose they will see in two weeks when I have my next appt with Derm. I think it is a matter of getting it under control, once there, probably cut down gradually. |
Title: Re:Eurythedermic Psoriasis
Post by: Alison on June 24, 2003, 02:23:42 PM
Well Nick, I am on it every day, I suppose they will see in two weeks when I have my next appt with Derm. I think it is a matter of getting it under control, once there, probably cut down gradually.
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hope all goes well with this peter and you get to see some positive results :) |
Title: Re:Erythrodermic Psoriasis
Post by: Nick on June 26, 2003, 09:20:55 PM
I agree.
Good luck with it Rock.
We all know how much you deserve a nreak from the dreaded P matey :hug: |
Title: Re:Erythrodermic Psoriasis
Post by: peterb on June 28, 2003, 06:46:20 PM
Sorry I have not been around for a few days, I have had a bad time with my P, on two occasions I was on the verge if asking my GP to admit me. I have been in pain with it, I have been getting through 3 X 500mg tubs of moisturiser a week. The Neotigison has been OK, no real side effects apart from it does make your skin redder for a few days. I have been resting from the moment I get up, to late at night, never watched so much television in years. My son has had to do a lot of the usual running around to give me a break.
Last night and today my skin seems to be on the mend and no soreness today :) Got another appt Mon and again next Sat. Missed Skincell, but the rest has done me good. Well just to keep you updated. |
Title: Re:Erythrodermic Psoriasis
Post by: Val on June 28, 2003, 07:46:22 PM
Ooo!! I am glad you're not sore today Peter. :clap:
At least that is a step in the right direction. :D :up:
We've missed you too, but get yourself right and keep on getting the rest, it's helping. ;)
Good luck for Monday hopefully you will be even more better by then.
:hug: |
Title: Re:Erythrodermic Psoriasis
Post by: Monika on June 28, 2003, 09:00:22 PM
| A big :hug: for ya Peter... glad your son is being such a good help! Keep resting. |
Title: Re:Erythrodermic Psoriasis
Post by: Celery Peach on June 29, 2003, 12:57:05 PM
:hi:
Thanks for the update Peter, I have missed you and was wondering how you were :hug:
I hope your skin continues to improve, good on your son for being such a help.
Take care :hug:
Celery :-* |
Title: Re:Erythrodermic Psoriasis
Post by: Nick on June 30, 2003, 12:04:01 AM
Hey there Rock :hug:
Rest is not such a bad thing.
Kris has been a real diamond for looking after you like that :up:
Let's just hope that the Neotigason does the biz and gets you out of the pain zone and back on the road to recovery soon :bighug: |
Title: Re:Erythrodermic Psoriasis
Post by: peterb on July 01, 2003, 12:56:48 PM
| Had another appt yesterday to see Derm, he is happy with progress, although the Neotigason brings out your Psoriasis in a big way. Everywhere you have P it brings it out on you, my legs now are completely red, no scales, where I thought I only had a few spots on my arms, these now are nearly covered also, again all the scales have gone. The Derm says this is how Neotigason works. I have another appt next Tuesday. The only one concern is, I am meant to use Dovonex as well, but no more than 100 grammes a week, when you have it like me now, how can you make a 100g tube last a week? I have also to Moisturise often and he has given me Epiderm as well. Still no side effects with tablets. I'll try later to get a piccie of my arms, and the effect of peeling of skin Neotigason producers. |
Title: Re:Erythrodermic Psoriasis
Post by: Nick on July 01, 2003, 01:13:34 PM
:up: It's good to hear that the Neo is working for you Rock :up:
That sounds really encouraging. Hopefully you should start to see clear skin coming through in some areas and for the redness to start to fade away :) |
Title: Re:Erythrodermic Psoriasis
Post by: Alison on July 01, 2003, 07:21:20 PM
hi peter
glad it seems to be working for you :)
i asked about the dovenex myself b4 , saying i used more than the allowance , basiclly got told no real danger if i did but just not to lash the dovonex on :-\
good luck wiv the epiderm , gawd that brings back memories , careful getting in and out the bath with that stuff ;) , is real slip and slide
keep on resting and fingers crossed for you :) |
Title: Re:Erythrodermic Psoriasis
Post by: peterb on July 01, 2003, 08:15:41 PM
| I know what you mean Alz about the Epiderm, I tend to use it at night now and Aqueous Cream during the day, I have been wearing my PJ's most of the time, as it is easier. |
Title: Re:Erythrodermic Psoriasis
Post by: Val on July 02, 2003, 12:17:03 AM
Pleased to hear that it's starting to work and that they are now looking after you better. :)
:hug: |
Title: Re:Severe Psoriasis
Post by: peterb on Today at 09:59:05pm
| 2 weeks into Neo-tigason treatment and no ill effects. It has started to kick in, in a big way. Lesions are fading now, some areas are still quite angry, but less painful. Have to see Derm this Thurs and have a blood test in 2 weeks time. I am hoping it has turned the corner on the road to healing. |
Title: Re:Severe Psoriasis
Post by: Nick on Today at 10:27:03pm
Bang on time for the stuff to start to show results too Rock :up:
I really do hope that you have turned the corner and it will keep getting better :hug:
And I bet that Kris has been an absolute diamond taking care of you too :nod: |
Title: Re:Severe Psoriasis
Post by: peterb on Today at 10:37:31pm
| Yes Nick, my Derm was right, he said that in 2 weeks I should see a 25% improvement. And according to intructions 12 weeks is the normal period. The only thing that shocked me, is how bad it brings it out on you, even places where you think you are clear. First they start really angry and painful, then they start to dry up and fade. |
Title: Re:Severe Psoriasis
Post by: Nick on Today at 10:48:19pm
Well it's good that it's driving it out of you rather than just covering it up :up:
It sounds like things are going well. I'm really pleased for you ;D |
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