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Author Topic: Anyone suffering severe psoriasis?  (Read 2931 times)

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Offline asaint

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  • Posts: 95
Anyone suffering severe psoriasis?
« on: May 29, 2007, 12:58:02 PM »
I'm so sick of this shit. At one point it covered 70% of my body. I tied UV-a/b treatment (didn't work), I have tried the topicals (didn't work much), I tried cyclosporine (a immune suppressor) which almost killed my kidneys, then I started using embrel (etanercept) a immune suppressor for about 8 months, which cleared up most of it, but the only problem was my cd4's and VL haven't did much of anything when I was on this treatment so I decided to stop using it. Nowadays without embrel (about 3 months) my VL is <50 (first time is about 3 years) and I think my cd4's are growing in small increments but there growing (about 7% now). 
Now the psoriasis is starting to flare up again, I'm so depressed, its really messing with my head, all I want to do is stay in the house an watch TV(boring), read the forums (aidsmeds & nikonians), and play a little poker on line. I hate being in public, and I feel like a frigging freak.
And I don't know if I should start the embrel again or if possible, wait and see if my immune system improves enough to start fighting this shit on its own.
Bob
6/11 VL <50   CD4 (9%)   CD8 (54%}

Offline penguin

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Re: Anyone suffering severe psoriasis?
« Reply #1 on: May 29, 2007, 06:35:53 PM »
hi bob

my psoriasis only flares up occasionally, nothing in comparison to what you are enduring - but i know how self conscious it can make me feel when it's a problem.

etanercept, lets hope you can avoid it in the future.. I think it's also realistic to expect improvement now that you're seeing the hiv more controlled by meds

This article, from amfar might be worth a read - scroll down, you'll see there's also a management algorithm thingy, which you might want to discuss with dermatologist/rheumatologist..things like PUVA + calcipotriene/tazarotene do appear to be quite well tolerated in hiv+ people, with some good results. I think I have another article/study on psoriasis management in people with hiv, but can't find it at the mo..will  keep looking though

kate

« Last Edit: May 29, 2007, 06:41:45 PM by penguin »

Offline asaint

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Re: Anyone suffering severe psoriasis?
« Reply #2 on: May 29, 2007, 06:51:31 PM »
Thank you Penguin very informative Yeah I can deal with my HIV status with no problem but when you look like you have leprosy, thats a different beast. Thanks again
Bob
6/11 VL <50   CD4 (9%)   CD8 (54%}

Offline Iggy

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Re: Anyone suffering severe psoriasis?
« Reply #3 on: May 29, 2007, 07:18:50 PM »
I've seen many people on this board swear by Neutrogena Therapeutic T/Gel Shampoo for a body wash and hopefully one of them will chirp in. 

While not on the same condition as you, I get very dry skin on my arms and a freind of mine gets psoriasis (though not severe) and what has helped us both is something called Aura Glow (yeah...I know the name is kind of hippy  ::)

I included the link for a place that sells it though I get it in health food stores in NY.  I like it as it has no pesticides or unnatrual preservatives and I apply it while I'm still wet in the shower and I find that my skin stays pretty soft the whole day.

http://www.internatural-alternative-health.com/ingr/ingr179127.cfm

Just a warning....it's somehow based on the Edgar Cayce readings so if you start having visions you've been warned :D

Offline asaint

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  • Posts: 95
Re: Anyone suffering severe psoriasis?
« Reply #4 on: May 29, 2007, 07:29:28 PM »
Thanks for the link. I give Aura Glow Massage Oil a try. If all else fails at least I'll feel nice and soft.
Bob
6/11 VL <50   CD4 (9%)   CD8 (54%}

Offline whizzer

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  • Posts: 363
Re: Anyone suffering severe psoriasis?
« Reply #5 on: May 29, 2007, 08:36:09 PM »
Bob,

Have you tried Soriatane?  It's a rentinoid, like Accutane for acne, but for Psoriasis.  It can raise your liver enzymes to unacceptable levels - it does this in about one-third of those who take it - but will control Psoriasis quite nicely. 

I've seen some info on the Hopkin's web site regarding using Enbrel in HIV positive folks, but they caution that you should be followed very closely if you use it.

I can see where your CD4 numbers would be unfavorably impacted by your use of Enbrel, but I would think it would also tend to decrease the viral load, for the following reason:

Psoriasis is caused by excess levels of tumor necrosis factor present in the dermis.  Enbrel is a tumor necrosis factor (TNF)  inhibitor.  TNF has been shown to be implicated in HIV pathogenesis.  High TNF levels, such as those present in psoriatics, cause an increase in the replication of HIV, which activates more CD4 cells, which produce more TNF upon activation, which increases the replication of HIV......on and on like that, in a big feedback loop.  TNF inhibition should reduce the replication rate of HIV though at the same time reducing the number of activated CD4 cells, but this has not been studied in depth, not yet anyways.

What has been studied is that  HIV infected individuals not receiving HAART, who start out with a higher amount of TNF, have higher viral loads and a faster progression to mortality than those with lower TNF levels.  Moreover, the amount of TNF predicted where individuals would be on the mortality curve.

There is a study at NIH that is looking at using Enbrel as an HIV therapy for those with multi-drug resistant HIV.

So there, in a nutshell, is everything I know about TNF, HIV, and Enbrel.  It ain't much, but it's all I got.

-Whizzer
(who is a psoriatic as well)

Offline asaint

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  • Posts: 95
Re: Anyone suffering severe psoriasis?
« Reply #6 on: May 29, 2007, 09:20:06 PM »
Thanks Whizzer
   Yeah when I started using the embrel I was mostly concerned about my liver cause I also have HEP and my cd4 were like 20 something % and VL was like real high. So I was kind of scared to use it at first, but I was just too beat up mentally to not give it a try.
Bob

PS oh I'm a veteran so I hope they have Soriatane  It was a bitch to get the embrel
« Last Edit: May 29, 2007, 09:24:58 PM by asaint »
6/11 VL <50   CD4 (9%)   CD8 (54%}

Offline whizzer

  • Member
  • Posts: 363
Re: Anyone suffering severe psoriasis?
« Reply #7 on: May 29, 2007, 11:22:42 PM »
They should have Soriatane in the formulary.  It is a pretty commonly used drug, and relatively inexpensive, certainly compared to Enbrel.  I've surprised they didn't put you on that before trying the Enbrel.

By the way, Enbrel has no real liver effects, but Soriatane does.  I doubt your doc would prescribe it with your hx of Hep.

What topicals have you used?

Offline ademas

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  • Posts: 1,151
Re: Anyone suffering severe psoriasis?
« Reply #8 on: May 29, 2007, 11:55:05 PM »
I'm on Humira, which is a biologic just like Enbrel, but my rheumotologist seems to believe it's not quite as tough on the immune system.

So far so good.  The plaques have cleared, my nails are clearing, and the swelling in my toes and achilles tendons is almost completely gone.

Have you talked to your doctor about a different biologic?


Offline asaint

  • Member
  • Posts: 95
Re: Anyone suffering severe psoriasis?
« Reply #9 on: May 29, 2007, 11:55:27 PM »
well when I was in Jersey I used two different types I can remember what topicals besides the triamcinolone the  other one begain with a K
here in Florida I just been on triamcinolone with some injections of the same I think, and he uses that freeze dried stuff nitrogen
I honestly don't think he knows what he's doing. And I definitely don't know what I need to be done.
6/11 VL <50   CD4 (9%)   CD8 (54%}

Offline asaint

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  • Posts: 95
Re: Anyone suffering severe psoriasis?
« Reply #10 on: May 29, 2007, 11:57:00 PM »
no I stop seeing him 3 months ago
6/11 VL <50   CD4 (9%)   CD8 (54%}

Offline ademas

  • Member
  • Posts: 1,151
Re: Anyone suffering severe psoriasis?
« Reply #11 on: May 30, 2007, 12:06:17 AM »
Well, I feel for you, dude.
It's a fucking miserable condition.
I don't think I'll ever stop Humira, as long as it continues to work, and as long as the doctor will write the prescription.
I just won't go back to that hell.
Seriously.

Offline chemistry001

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  • Posts: 142
    • http://www.mygaydar.com/chemistry001
Re: Anyone suffering severe psoriasis?
« Reply #12 on: May 30, 2007, 06:12:51 AM »
I had a year of guttate psoriasis, bloody living hell. It was all over my face my torso, in my hair, arse and inside legs. I avoided looking in the mirror and going out but was starting a new job as a teacher so had to stand in front of school kids all day.
Every morning i did the UVB therapy for up to 40 min at a time, it went and Ive had a year clear of it, but it is starting to come back under my arms. Ive noticed a few patches.

Moisturise, moisturise, moisturise. Avoid stress (easier said than done) that's what my routine is going to be until i fear i have to go back into hospital for light therapy.

My heart goes out for you and everyone who has this, its soul destroying. For me the sunshine helped a bit, so Bob strip off and get your white bits tanned and if you want someone to rub moisturiser into your white bits just give me a call  ;) ;)

Much Love to everyone
Paul xXx
Diagnosed 01/08/06
CD4-9, VL->500,000, CD4% 1
Started on Sustiva/combivir 22/08/06 changed to kivexa 18/09/06
02/10/06
CD4-50, VL-1496, CD4% 5
04/12/06
CD4-112, VL-125, CD4% 7.5
22/02/07
CD4-121, VL-<50, CD4% 9
29/05/07
CD4-125, VL-71,(re-done 149), CD4% 11
25/09/07
CD4 -231, VL-74, CD4% 15
Cant remember the next few dates
17/01/08  Kaletra and Truvada
CD4 - 281, VL-115
06/03/08
CD4 - 287, VL-178

Offline thescot

  • Member
  • Posts: 22
Re: Anyone suffering severe psoriasis?
« Reply #13 on: May 30, 2007, 09:34:02 AM »

Asaint,

I have suffered severe psoriasis for almost 35 years. I have used all the messy stuff and suffered from the looks and comments over the years. I moved to Thailand from the UK 12 years ago and the sun seemed to help a little but i still had to use dermovate (body) and polytar (scalp). Surprisingly after finding out my Poz status 1 year ago the psoriasis on my body eased to where the only visible bits were under my backside? Very surprising as i thought it would go wild in the opposite direction whith all the stress of finding out. My scalp was still bad having to medicate twice per week but after starting meds i have not had to apply any creams or shampoo and only find the occasional dry bit that seems to go away on its own. After suffering for so long with psoraisis i find it hard to explain the total relief from the shitty condition but would still have it back in return for the HIV if i could?

thescot

Offline northernguy

  • Member
  • Posts: 1,347
Re: Anyone suffering severe psoriasis?
« Reply #14 on: May 30, 2007, 12:37:11 PM »
Can anyone explain to me the difference between psoriasis, eczema and seborrheic dermatitis?  They all seem to be metnioned in relation to HIV ???
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Buckmark

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  • Would you like to tie me up with your ties, Ty?
    • Henry's Home Page
Re: Anyone suffering severe psoriasis?
« Reply #15 on: May 30, 2007, 01:09:14 PM »
Here is an interesting article on Medscape about HIV-associated psoriasis.
FYI, you need to be a registered user on Medscape to view the articles
(but it is free), and they have a whole site dedicated to just HIV/AIDS,
with tons of information (sometimes too much):

http://www.medscape.com/viewarticle/556533?src=mp

The article doesn't have a lot of suggestions for relief, and it goes into
some excruciating detail that is way over my head.  Still, you never know
what you insights you might find.

Regards,

Henry
"Life in Lubbock, Texas, taught me two things:
     One is that God loves you and you're going to burn in hell.
     The other is that sex is the most awful, filthy thing on earth and you should save it for someone you love."
- Butch Hancock, Musician, The Flatlanders

 


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