My really bad day

[MAE64]

I'm 39 years old and I've been dealing with psoriasis the last 5 years or so. For the first 3 or so it was mostly outbreaks on the elbows and arms which were annoying and itchy and dealt with by ignoring the problem or topicals that helped the itching. As time went by the itching got very severe during outbreaks resulting in MASSIVE doses of benedryl or in worst case senarios in visteril which would knock me on my butt. I developed arthritic pain and am currently seeing a rheumatologist who has started me on methotrexate. (It's my 3rd week of treatment so far too soon to have any clue as to efficacy)Dealing with the basically constant pain is very difficult and I now take 500 mgs of naproxen 2 times a day + Tylenol #3 during flares (which makes me nauseated and itchy - I have a call in to the doc re: this). I've been very sad about what I percieve as a reluctance to treat my pain but after hammering away I 've recently felt as if I was beginning to be listen to. My really bad day started this morning when I woke up with my face COVERED with psoriasis lesions and bleeding. I feel cursed. It hurts to walk, it hurts to sit, it hurts to lie down, and now my face looks like I've been tatooed with leopard spots. So now am I to be a hermit as well? I don't know how to keep doing this with any grace at all.

[web63]

First off don't think about what other people think.
You are all that matters.
My Psoriasis (P) is not bad, and I feel for anyone who has a bad case of it.
As far as the Psoriatic Arthritis (PA) pain, I can vouch for that. I am in the midsts of a year long flare. I have not had a day without pain since before Christmas 2001.
If your pain gets any worse, you will probably get put on Enbrel. I have just begun Enbrel (about 3 weeks). I have not got any relief as of yet, but I am still hoping and praying that this will be me miricale drug.
I hope things get better for you.
If you ever want to talk, e-mail me at <pa@web63.com>

Thanks,
Scott in Atlanta, GA

[rosee_posey]

Hello MAE64,

I agree with Scott - if your P and PA are extreme (and it sounds like it is) one of the biologicals may be the way to go (like Enbrel or Remicade.)

Talk to your dermie about the pain, and discuss seeing a Rheumatologist. Dermies usually don't have experience with biologicals, but Rheumys do, so hopefully your derm would talk to your rheumy about putting you on one of the biologicals.

I have severe P and PA, and am currently in remission through the off-label use of Remicade. When I was flaring, I too couldn't move, sit, walk, and was stuck on my couch for almost a year. P was a 24x7 battle for me. Just want to let you know that there is a way out, just keep the faith and hang on.

Repeat after me:
"What other people think of me is none of my business!"

Hope this helps,
- rose

[deedoo]

I'm so sorry you're going through this.

Talk to you Dr. about everything, and don't be shy about repeated calls. If you're having problems, you need to be very proactive in your treatment.

Don't stress, it only makes it worse. Accept it, get it treated, and move on. Don't worry about what people think of you, and don't hide from life just because you have P on your face.

Take care of you! I hope you find some relief soon!

[MAE64]

Thanks all for your kindness and positive words. The facial lesions that appeared went away in only 2 DAYS, a miracle! I think that it was made worse by some bar soap that I used 2 days before when I ran out of my usual "very mild baby soap". The peeling I'll deal with in the next day or too but I'll just pretend I went to Puerto Vallarta and spent too much time in the sun.<a href="http://www.seniorservices.org/messaging/images/devil.gif"> </a>. My doc gave me new pain meds which seem to be causing less nausea, and fewer headaches. So...all in all I feel MUCH better today. Thanks!

[2blueleader]

First off, this was longer but I deleted most of it as far too negative.

Bad day? How about a bad decade (and a half)? I've been watching it get slowly worse year by year. Its insideous! O.K. let me preface by saying that there are other disorders out there that are far worse (e.g. degenerative nerve diseases) so I DO count my blessings. But to the mantra "it only matters what I think" just doesn't work after awhile. Its just like that movie "Ground Hog Day" with Bill Murray, waking up to that same Sonny & Cher song. You wake up, there it is and then you start the same thing all over.

[marianp]

Hi Mae64...I too have P and PA. Please know that there are different meds out there that you have yet to try and they just might be your ticket to relief. As the others have stated, if your doctor is not being proactive in your treatment, please do not hesitate to find another. You must be aggressive in your treatment to stop the progression of PA. I am currently on the max of MTX and Celebrex (I didn't see you mention anything about Celebrex or VIOXX...both can be extremely help in controlling the inflammation and pain.) I just received my first shipment of Enbrel and will start the injections, but my rheumy still wants me to stay on the MTX and Celebrex for the time being -- hopefully we can slack off after the Enbrel kicks in. My purpose in detailing all of this is to explain to you that there are many combos of meds that can be used .....so please, please, don't get discouraged. After my PA hit, I could hardly walk for 4 months....but with the help of some good doctors (I switched rheumy and derm doctors)....life has improved so much for me in the last couple of months, I thank God every day...and I am hoping that with the help of Enbrel, it will continue to improve. We're all here to help you.
Hang in there, and God bless you.