I need advice

[kellyr]

Hello,

I'm looking for some advice. I've had mild to moderate p for about 3 1/2 years. Mild for the first 3 years - moderate for the past 6 months.

In the 1st 3 years, I had 1 nickel sized lesion on my leg and a few dime sized lesions on my elbows. Not scaly, not itch - nothing. A bit of cormax and dovonex did the trick (complete clearance). I was lucky then.

Anyway - now, here I am with moderate p. Some on my lower legs, knees, feet, hands and scalp. Only itchy and scaly on my scalp. Just flat and purple and a bit unsightly. I don't have 1 body part fully covered by this disease - but enough to deter shorts, skirts and open toed sandals.

I went to my derm to ask for help. Pardon me, but it wasn't until I educated myself that I realized, he's pretty clueless about this disease. He proceeded to write scripts for the usual cormax and dovonex. Well, these ointments are only doing a half job on my p this time. They are flat and white. Is flat and white what they call remission? Am I going through all of the applications for just a different shade of skin (from purple to white)? If I had a good derm, I'd call him/her - but as of right now - I don't really have any place to go.

I know that my p could be worse - it could be a lot worse. But, I am still not happy about it.

Any advice/input would be appreciated.

Thanks,
Kelly

[timba]

I am new to psoriasis, have it one year, but
it is all over my body, feet, hands and scalp. I am currently four weeks into a course of cyclosporin. Did the creams, did
the light therapy and now on this medication.
I like my dermatologist but I think that maybe they do not know all that much about
psoriasis. I just took a shower and smell
like bagbalm and t-gel. I am cold so I am
covered with old pajamis and a sweat shirt.
I do not think I will be in Playboy this month. As I write to you I itch and burn. I never feel really clean as I am always covered with some type of cream. My body is
two toned red and white, while my face is
beet red. You know, I just thought of something. I have blue eyes. I could be compared to the American Flag. Red, White and Blue. Excuse me, just a sad joke to make us feel better. This horror has to get
better, not end, I could not hope for that, but just better. You need some relief, I need some relief. The NPF is tring to get
products pushed and approved by the proper
drug avenues. I know they are working and we
must deal with this disorder. I am not happy. I am so sad. I made a pact with God
yesterday, I would not eat any more HaggenDas
(ice cream) if I could just have a good day.
Silly, but I will try anything. Hang in there. Think good thoughts. Pray if it makes you feel better. Whatever...

[David1]

Kellyr, I have suffered to much the same degree as you but for much longer. Forget the creams and ointments. I have found that sun and surf is a great therapy. Hopefully you are dark complected and live near a beach. Don't be shy about getting out there. Just do it. If that doesn't help you may consider phototherapy at a good dermotologist office. Phototherapy worked great for me several years ago. It completely cleared most of my spots never to appear again(at least not in the same exact spot). Good luck and hope I helped.

[Angel]

I too am starting on this winding path of ups and downs. About a year ago, I started with 3 dots on my stomach. Derm put me on oils, creams, potions and lotions. Slippery! It all seemed to work. Now a year later my doctor has given me METHOTREXATE (MTX) used for severe p's,a mild chemo treatment. My Derm told me that there was hope down the road. The FDA will soon approve a new drug called PIMECROLIMUS. It will be the cure for Psorasis. Keep your chin up and hopefully we'll all be wearing shorts soon!

[jeffreys]

Dear Kelly,

The creams and ointments get frustrating when you go through all of the trouble and there is still something there. Light therapy accompanied with dovonex sometimes helps me. Having a good dermatologist is key. I should know, I've tried several in North Jersey and I wound up back with my original who is pretty good after I got a taste of what else is out there. I've gotten frustrated with dermatologists as well as the medications. It is important to have one who communicates well and is up to date on the latest developments. So if you think the one you have now is clueless, maybe your condition is not so severe that he/she is reluctant to prescribe anything other than ointments or maybe he really is just clueless. They usually start with topical stuff. Dermatologists tend to work on trial and error starting with topicals. I guess it depends on how much of it you are willing to live with. I have had it for 13 years. Anyway there are some more intense treatments that can bring you to complete clearness that you might want to discuss with your doctor. WIth me, all the ointments,creams,lotions in the world don't work. I sometimes get it severely and when I do I usually go on some prolonged regime. Methotrexate,Soriatane,Tegison,PUVA are some examples. PUVA for me is my favorite with the least long term health risks. I use a little dovonex on the lingering spots but its more for psycological purposes. I have heard of people who react great to Dovonex. I just read that the same company has another ointment coming to the US soon. There are various treatments in clinical trials for psoriasis. One in particular that I have been following to an extent is amevive. I have high hopes for it. Maybe they are false hopes. But positive all the same.
Anyway, stay strong. WHo knows what lies ahead for us.It will improve. Skirts and shorts look nice but Its whats on the inside that counts. Your smile.

[Angef]

I suggest that you do some online reading about your condition then try to find a good dermatologist. I went through treatment after treatment until I found a good one. The creams, gels and light treatment did not help my condition any. Methotrexate may be what you need. Ask your doc about it. Good luck and God Bless!



Ange (nailsx10@yahoo.com)

[kellyr]

Hello,

Thanks for the feedback!

Sun has usually been good for me - but then again, I have not yet tested my new 'babies' in the sun. I live in the Jersey shore area so getting to the beach is easy. And I love going!

I'm not entirely disappointed in the dovonex and cormax - they make my lesions flat and white - but how long will a derm keep a person using these creams? The cormax concerns me. Thinning of the skin and enlarged blood vessels don't sound appealing either. Will the derm stop me once I suffer from the side effects? From what I've read, the cormax should not be used long term. Long term? Long term is used quite loosely and I'm not sure exactly what that means.

I feel really foolish sometimes complaining. That's why I mostly just read the postings. I don't suffer from pain, itching - or anything. I guess it's a bit of my vanity coming out.

I can tell you this - since I became a member, I have prayed for each and every one of you that your suffering will soon come to an end. That you will be able to lead a pain free and hassle free life. You have inspired me to try a be a different person. A bit more optomistic and more appreciative of life's simple pleasures. Sure, I lose it sometimes and get a bit down - but I guess that's what this message board is for.

Thank you all for taking the time to send a message back to me.

[IBARRA01]

Hello, I am 22 and I have only had p. about 6 months, and that is long enough! I really feel like though it may take a little while longer, but they ARE going to find a cure! It is amazing how 6 months ago I did not even know what psoriasis was, now I am a walking encyclopedia!! Anyway I am using clobetasol propionate ointment on my body, where it isn't too bad. On my scalp where it is quite a bit worse and sooo itchy, I use head and shoulders shampoo and conditioner along with nizoral 2% shampoo and some drops I put in my head (forgot the name). All this keep it under control but I have not completley cleared up since I've had it. I went to tan the other day (just once) and over the next couple of days it seemed like you could berley see the spots. Now, almost two weeks later, they are back. I have decided to start tanning a coulple times a week, if the first tan was any indication of results to come, then I am going to be THRILLED! I know tanning is not supposed to be good for you, but I am suffering and if that is what it takes that is what I am going to do. Anyway, mabey you shoud try it, or at least get out in the sun (it is still too cold here for that) Good luck & God Bless!

[kellyr]

Hello IBARRA01,

I go tanning 3 times a week. I've been tanning since November. For me, it improved the look. The darker I get, the more 'blended' the p looks. When I was first diagnosed, the tanning actually took care of it for me - but now, the spots are fighting me back. But, between the topicals and tanning and moisturizing - it looks much better than if I was not treating it at all. In the summer, I'm a beach bum. So, I'm hoping that my trips to the beach will be my only treatment this summer :)

[David1]

A trip to Florida might be just what the doctor ordered. I live in Georgia so I'm not to far from Panama City Beach. I go even for just a day. Great therapy.

[slg]

Dear Kelly,
I have had psoriasis for a while and then it got really bad spreading from just my knees and elbows to the rest of my arms and legs, my scalp, my stomach, behind my ears and by my nose. Like you I tried all the creams that my derm was prescribing. I did a little research and found that UVB treatments to clear me up. I have had 30 treatments to date and have only a little redness where I had scaley patches. This is safer than PUVA because you don't have to take any medications prior to treatment and it does not have the nasty side efects, except for some burning, like you would get from the sun. I refuse to use anything else, and will not when it comes back. I have to use creams for the areas that I cannot expose to the UVB light. Good luck.
ShanaLG