the heartbreak of psoriasis...

[stella]

anyone else out there have psoriasis? For me, it has led to having to be careful w/what clothing to wear, using a well ventilated helmet, etc.

Let's exchange info re: clothing that feels right and what is irritating!
anyone with sensitive skin welcome to contribute as well!

edit: perhaps this belongs in the apparel forum. How do I move this?
thanks!

[Fuji Girl]

I cannot answer your questions, but I just wanted tell you good luck.
I do not personally have psoriasis, but it runs in my family. It can be really devastating. My aunt and uncle (on my mom's side) have it really badly, including psoriatic arthritis, the works.

I hope you find your answers here!

[KnottedYet]

I get gawd-awful eczema if I eat wheat, oats, barley, or rye. Mostly on my hands and feet. I have ended up wearing cotton gloves over a thick layer of hand salve when it was really bad. Same old socks, but with a thick layer of Burt's Bees hand salve, too. Gotta keep my feet dry in general to avoid low-level eczema so I wear wool socks most of the time.

[Grog]

I get gawd-awful eczema if I eat wheat, oats, barley, or rye. Mostly on my hands and feet. I have ended up wearing cotton gloves over a thick layer of hand salve when it was really bad. Same old socks, but with a thick layer of Burt's Bees hand salve, too. Gotta keep my feet dry in general to avoid low-level eczema so I wear wool socks most of the time.

Isn't that gluten intolerance??

[DirtDiva]

My first thought too - good friend of mine has chronic hives due to coeliacs, and she's been off the gluten for two or three years now (although it has improved markedly); it took forever to diagnose correctly because that was her primary symptom.

[betagirl]

I don't get psoriasis but I have crohn's disease and you get some fun skin things with that sometimes. I don't get the really nasty stuff, but will get an eczema or something-like rash on my face around my mouth periodically. It also will show up on my shoulders from time to time. I have no idea what it is, and my doc assumes it's crohn's related. The only thing that clears it up is steroid cream. I also used to get (knock on wood) this weird rash in the sun on my arms and chest. Felt like little pin pricks all over the place. A dermatologist said it was PMLE, and said it *could* be related to the crohn's. But apparently those without it get PMLE as well. That hasn't happened in a couple of years thankfully. The only thing that fixed that was time (once I had a tan, it stopped).

There are new meds out there for psoriasis. I'm on one of them - Humira. I've been on it for 2 years (started out in a clinical trial). It's FDA approved for Rheumatoid Arthritis, in clinical trials for crohn's (but you can get it off label use). I believe it's still in trials for psoriasis also:

http://www.webmd.com/content/article/91/101441.htm

No, I don't work for Abbott :) I actually hate taking meds, and went on a med vacation for about 6 months only to have it catch up with me. Humira put me in remission, among other things. Not sure if that's even an option for you, but I thought I'd let you know.

Good luck!

[stella]

I don't get psoriasis but I have crohn's disease and you get some fun skin things with that sometimes. I don't get the really nasty stuff, but will get an eczema or something-like rash on my face around my mouth periodically. It also will show up on my shoulders from time to time. I have no idea what it is, and my doc assumes it's crohn's related. The only thing that clears it up is steroid cream. I also used to get (knock on wood) this weird rash in the sun on my arms and chest. Felt like little pin pricks all over the place. A dermatologist said it was PMLE, and said it *could* be related to the crohn's. But apparently those without it get PMLE as well. That hasn't happened in a couple of years thankfully. The only thing that fixed that was time (once I had a tan, it stopped).

There are new meds out there for psoriasis. I'm on one of them - Humira. I've been on it for 2 years (started out in a clinical trial). It's FDA approved for Rheumatoid Arthritis, in clinical trials for crohn's (but you can get it off label use). I believe it's still in trials for psoriasis also:

http://www.webmd.com/content/article/91/101441.htm

No, I don't work for Abbott :) I actually hate taking meds, and went on a med vacation for about 6 months only to have it catch up with me. Humira put me in remission, among other things. Not sure if that's even an option for you, but I thought I'd let you know.

Good luck!

thanks for that info. I will check w/my md. I am topicals right now which work--for the most part.

The biggest adjustment I have had to make w/respect to cycling is choosing my clothing carefully so that it is not irritating.
for example: smart wool socks versus nylonish material socks. My helmets have always had to be very ventilated (which ends up costing the most money) to prevent the psoriasis from breaking out on my forehead.

I didn't know if you, or others w/sensitive skin have run into this.

I was thinking of getting a pair of wool shorts--although I do not know who makes them.

[KnottedYet]

Ibex (www.ibexwear.com) makes fabulous wool clothes. They have several wool cycling jerseys and cycling shorts, capris, and tights. In the Apparel thread there's a long discussion of brands of woolies. I wash my Ibex boxers and shirts in the machine with other clothes regularly and have had no problems. My next big Ibex purchase will be the cycling capris.

Be sure to check out the Outlet section of their website. The sale stuff changes every couple weeks, so I look often.

Gluten Intolerance/Celiac Disease:
Yup, I've got it. It's all through my mom's family. Gets worse as we get older and with stress. I've been gluten-less for about 4 years after just avoiding it when I was stressed before. We also have the B12 malabsorption that goes with it. Sublingual B12 is a whole lot cheaper than the shots so that's what I do.

[betagirl]

Yep, B12 issues here too. I do shots though. I have enough needles in a big jug in my house to start a heroin safehouse :)

Stella, no problem. Aren't autoimmune diseases fun?

[oldbikah]

I have been fighting psoriasis for about 20 years now, but never had it until well into adulthood. My father had some skin issues, and my son fights some skin issues related to eczema. So I guess it does run in families.
My scalp part isn't too bad (and I wear a helmet skiing and that amounts to
2-4 hours a day about 4-5 days a week), just the flaking, but one leg is getting really bad--feeling like a big burn and with more random patches appearing. It usually seemed to get better in winter (go figure) but not this year. It is pretty ugly but I wear shorts anyway---I figure it isn't any worse to look at than a big birthmark. Have always avoided medications except topical, but I am about to go to a dermatologist. I don't see any diet connections or clothes connections in my case, but who knows, maybe I haven't noticed! Suggestions always welcome--yes, let's share!

[stella*]

I cannot answer your questions, but I just wanted tell you good luck.
I do not personally have psoriasis, but it runs in my family. It can be really devastating. My aunt and uncle (on my mom's side) have it really badly, including psoriatic arthritis, the works.

I hope you find your answers here!

thanks for the words of encouragement. I've had this all my life and have the psoriatic arthritis since I was 10y/o. My saving grace has been being active and cycling has been great for me and my bones.