Does this sound like you?

[1WeekAtATime]

Hello fellow PA sufferers! I am doing my darndest to figure out what is best for me right now. Please read and tell me what you think.

I started suffering from plaque psoriasis of the scalp after beginning lithium carbonate at the age of 14, something I must take forever. This is not the main point of my post, all you luckies who don't ever need it... the only thing you really need to know is that it caused my psoriasis and that it may be speeding up the development of my PA, age-wise. Also, if you have friends or family on it, let them know that I have finally seen a rheumologist and a psoriatic specialist who both attribute my PA and P to it.

Anyway, I had some knee issues playing sports at that age, but no injuries, just warm pain and cold creaking depending on the stress I had put on them that day. Around 18 or 19, my psoriasis flared to a completely unmanageable level. Though nothing worked before, I was trying everything- steroid injections, creams, shampoos, Urea ointment/steroid combos, etc. Finally, I went all in and tried Enbrel. It worked to slow 50% of the plaque production, and I could feel that I had a scalp again. Also, I felt like I could go jogging if I wanted to (something that has never felt right), and I had amazing energy and playfulness. I really hadn't realized the extent of my joint affliction until that moment.

Unfortunately, the chemicals just weren't right for me, and I had a bad injection site reaction on my left leg. Right after that, I had woeful joint problems. Sometimes, I would have all-over flares, and I sort of still do. One night, I had screaming-threshold pain in my hips after standing on concrete all day. One day, after not wearing a knee brace for the first time in a week, I came home and layed down, only to scream for quite a while when I got up, sure that I had broken my knee. Now, I have days where I can hardly get around. I'm a 21-year-old elderly woman, complete with handicapped parking permit.

I'm not sure what role Enbrel played in all of that, but it's time for me to find new TNFs/Biologics. I can't live on Valium or Darvacet forever, especially if I don't have my own chauffeur. However, I'm afraid of my joints getting worse. No matter how much doctors think they know about what they're prescribing, there's always going to be a testimony on this site to prove them wrong. What medicine should I avoid after being on Enbrel?

The other aspect of this is... my choices, Humira, Remicade, and Methotrexate, are all really scary! For MTX, I'm afraid of needing an antibiotic or prednisone and not being able to use it in time because I have to wait for the MTX to get out of my system. I'm afraid of becoming pregnant accidentally and being the woman at fault of having a stillbirth. I'm afraid of sunlight somehow hurting me, of drinking a little too much, or taking an Ibuprofen by mistake. I also do not want MTX-induced lung disease, malignant lymphomas, or Organ System Toxicity.

As for the others, I need to get the HPV vaccine, I don't always know when someone has a cold or the flu and do not want to worry about it, and I really don't enjoy picking my cancer.


So what do I do? I can't take Naproxen because I have fixed drug reactions, and I actually cannot take any NSAIDs until 6 months from now, when I'm off my blood thinner (oh yes, and I also mysteriously got a blood clot with no genetic ties recently), and tylenol is the world's biggest let-down.

Any advice or similar stories are welcome!

[AnnieB]

Well, as I understand it, Humira is very similar to Embrel as far as the way it works and the side effects. I am on it and having good result. The occassional itchy site reaction is all. And I have not had more colds than usual...probably less, actually. I plan to get a flu shot (which I have been told is okay if you get the "dead" one.) Hope this helps a little.

[JesseLou]

If I were you, I'd make some lists. In the first one, write down all of the PA and psoriasis symptoms you have now, and realize that this list could double in a year's time without medication of any kind.

Then I would make a list of the reasons for not taking each of the medication possibilities you mentioned.

I would decide if the disease list warrants taking the risks and/or giving up creature comforts like alcohol in order to try for control.

And if I were you, one of the things I would keep in mind as I make the lists is how each drug is delivered into my system - ie: self-injection or doctor's office infusion - and how often the drug is taken. This last determines how long it takes for the drug to leave your system.

One note: I take MTX. I have taken dose packs and once a course of prednisone, as well as several kinds of antibiotics, without going off the MTX. I have had colds, flu, and sinusitis, also without having to go off MTX.

[LoriASoCal]

yes, I'm currently on prednisone daily and mtx weekly and have been for a long time. Actually, I've had surgeries, antibiotics all kinds of things and never had to go off the mtx. Sometimes I choose to do so for a week or two if I'm ill. But that's about it.