Limping Along

After the youth retreat in late August in the motel my skin broke out and thickened all over. It took a few weeks to recover from that. Then, after seeing the derm at the end of September, I broke out again. This time it coincided with taking Keflex for boils that had erupted all around my body (thankfully I took the last dose this morning).

Now it has been about ten days since this break out started. Wondering if Enbrel or Neoral (or both) are starting to lose their effectiveness? I have been on Enbrel for about a year and Neoral for about2.5 years out of the last three. My kidney function has been normal and my bp and cholesterol have come down dramatically. Maybe Humira, after it is approved, may be the next to rotate to.

I feel like I have been limping along with my skin/treatment. Any triggers such as diet, stress (had a lot recently), lack of sleep, etc. seems to set it off. It is a precarious time. But when is living with severe psoriasis predictable anyhow?

SoCal Summer Sun

I really didn't know what I was asking for when I decided to move to the Los Angeles area. The sun here is intense, the heat relentless--and that's with a fairly normal summer so far. I think my area is hotter than the coast and LA proper, but cooler than the Inland Empire and the desert regions. Everyday the UV index is "extreme" or "10+" so just a few minutes gets me nice and toasty.

After balking at tapering to 100mg Neoral/day, I finally took the plunge. First I tried two pills one day, then one the next for about four weeks. The past four weeks I've been on one pill only along with the Enbrel. Although I have broken out in more areas (more lesions, scalp flaking more) it stays relatively under control. The sores aren't too red, hot, thick, or itchy. I'm curious what the next step will be when I see the derm on Wed. Perhaps adding more sunlight and getting off the Neoral completely?

Labs were overall good: CR 1.0, CHOL 185, TRI 221 (slightly elevated), and BP 115/68. I lost track of how many weeks I've been taking the Neoral, but I think it's around 40. A recent study showed that Enbrel was safe and effective up to 90+ weeks for psoriasis patients. That's encouraging. Wonder if Humira or other biologics will be even more effective in the future? Come a long way since the days of my childhood using 10% LCD coal tar in Aquaphor each night. Stained everything and really uncomfortable. Now it's an injection once or twice a week (or even less frequently) and maybe something else.

The Weaning Process

Tuesday marked another step in the weaning process. After about nine weeks of 200mg of Neoral combined with the Enbrel 50mg twice a week, I am coming down to 100mg/day. That's one horse pill daily. My cholesterol was steady at 199, Triglycerides inched up at 202, bp 121/71, Creatinine 1.1, and liver function tests good to go.

Although I still have an Appalachian-like rash on my back, the rest of my body has stayed "virtually clear." The derm was pleased with my progress. Southern California sun seems to be helping too.

The tough part is letting go. Neoral was the only therapy that quelled the raging fiery sores all over my body 2.5 years ago. Since then I've only had about six months while trying Soriatane and NUVB. Yikes, was that a horrible experience last year. Now that I'm much more clear, Enbrel seems to be able to handle the load. Psychologically, though, it's difficult to taper off. I know my kidney and other organs will thank me--but I just don't ever want to go back THERE again.

Stepped down Neoral

About four weeks ago I stepped down from 300mg to 200mg of Neoral a day. I am still taking the Enbrel 2x/week at 50mg. So far so good. Though mostly stable, the psoriasis is slowly breaking out here and there. Not much to speak of though. Hair growth has slowed too, especially facial hair. 30 weeks of Enbrel so far.

The dryness in SoCal causes the skin to have a burning sensation. This summer should be good with the sunlight but bad with the dry humidity levels.

Derm also biopsied a wart--and confirmed it is indeed a wart. He plans to freeze or slice off a few more next time. Yikes!

Stress!

Finished my 10th box of Enbrel last Thursday. Twenty weeks later I am still doing quite well, but I noticed with a spike in stress my skin has done worse. Today I am quite agitated by some things that are going on at work. When life gets this way my skin certainly does break out.

The Enbrel itself, I'm afraid, won't be enough to suppress the psoriasis. I would love to taper off the Neoral. Maybe I'll try anyway with the sun out more of the day now. DST will also allow me to get home and get some sunlight.

Enbrel: Twelve Weeks and Counting

After twelve weeks of Enbrel therapy I am still not clear. Last week I had the worst flare in a long time. Don't know if the flu bug that hit me or my recent holiday diet had anything to do with it. Whatever the reason, my lower back psoriasis burned morning to night and I experienced some new outbreak. Then, out of nowhere, my skin improved to almost the best it's been over the twelve weeks. Again, the mystery of psoriasis and the immune system reigns as I am clueless as to the triggers.

A recent email from Enliven services said that it can take 3-6 months before those with plaque psoriasis will see endpoint results. I had been under the impression that I would see more significant results in three months or less. With new expectations to manage I am less worried and ever the more encouraged to continue the therapy.

As to cholesterol and trigylcerides, I am afraid that I may need to take medication to mitigate the elevations of these with the Neoral. Will continue on with exercise and diet (i.e. lifestyle) changes per doctors' instructions.

Derm Visit 12/11/06

Saw my dermatologist on Monday afternoon. My labs were disappointing--Cholesterol 236, Triglycerides 265, Creatinine 0.9, bp 132/82, CBC and AST all normal. It's normal for Chol and Tri to be elevated, but they have been so as long as I have been on the Neoral.

I will continue the Neoral 300mg and Enbrel 50mg twice a week about 8.5 weeks done. The Enbrel website says that some see results within two months. I definitely have seen results but it is up and down. Thankfully the injections are with pre-filled syringes--I used to have to mix four vials of medicine a week (with four injections).

Emotionally I'm not doing as well. I thought with dual therapy (plus topicals) I would see fantastic results more quickly. It is an expectations game with psoriasis and I almost always expect more than I see on my skin. So I'll need to readjust my expectations and see how the next two months go before I see the derm again.