Hey, I’ve been plagued with this &$@! disease for 27 years. For much of it, I could barely lift my shoulder or bend my knee. I had sausage digits (such a charming name) and some days could barely walk from the pain in my toes. Legions covered my body EVERYWHERE. I had to brush the flakes from my bed. I used steroidal creams and ointments and even wrapped myself in plastic wrap at night. None of it worked. So frustrating. I didn’t want to use methotrexate because of the harsh side effects. UV treatments were the most effective, but my insurance would only cover a small number, somit became too expensive to maintain. Finally, around 2004, I started a test program for the biologic Raptiva (no longer on the market due to a few fatalities). It cleared everything. It was like a miracle drug. I’m now on Humera and find it extremely effective. Almost everything is gone–and I’d been covered from head to toe. I can gomto the gym, hike…I domget soreness in my knee from time to time, but nothing like it was. My eye sight has deteriorated, but somfar glasses have corrected any issues. I do think diet and exercise play a role in combatting fatigue and depression. I still think of those old ads “the heartbreak of psoriosis.” I don’t think there’s a better way to put it in terms of how it feels emotionally. Then you add in the joint pain. It can be psychologically crippling, especially when you’re young and more self conscious. I am thankful that I’m living in a point in time when biologics are available. I don’t like the idea that I’m so dependent on them…I’d rather have a permanent solution (short of death). But it’s something.
That’s really great, that you’ve seen such a big change. I’m curious, with the changes that you’ve seen now, if you were told that you had to add in methotrexate so that the biologic stayed effective, would you? There’s another DMARD that is sometimes used instead of methotrexate, and it’s called leflunomide (or Arava). Just something to put aside for the future.
I’m just sorry that you didn’t come upon such a big change earlier on. I can only imagine how things might have been different for you. Biologics are used now even for just the skin condition. I know that the meds aren’t a cure, but the control that they provide can be crucial.
Hey Persia
Welcome to the PsA club house. Like most of us, you’ve gone through a lot. Like some of us, you recognize how very lucky we are to have biologics at our disposal. Our disease before biologics was a grim sentence indeed. None of us likes being dependent on medications, but the alternatives are worse. I too look forward to the day that there will be permanent solutions, like one that I’ve read about in which the immune system gets a “reset” and can start again, without having an appetite for joints.
Make yourself at home here and join in our conversations!
Seenie
Hi “New Dude” Persia! I like your story–such a happy “ending”–or should I say, continuation…?
Yes, a permanent solution would be magic–and we can only hope. If not in our lifetime, I have kids and grandkids (not affected YET) that I hope never have to live with the &$@! disease!!!
Wow, the Raptiva–deadly stuff? Was it so harmful to people’s immune systems they died from infections, or was it damaging to their heart? It would be interesting to know why people died from it! Thank God, you’re here to talk about it! It’s nice that Humira is working so well for you! The “heartbreak of psoriasis” ads, and now the “see me–don’t stare at me” ads…they bother me. I know they’re meant to bring awareness to psoriasis so people don’t think it’s contagious, but they embarrass me more than anything. Maybe I’m just weird about it. I’ve always been self-conscious about my psoriasis, and I hid it, always wearing long pants and 3/4 length sleeves to cover my elbows. Only when I have a really good tan will I show my legs. Luckily, Enbrel has cleared up 75% of it and it’s not that big of a problem anymore.
I’m interested about Stoney’s comment about taking Methotrexate or Leflunomide to keep the biologic effective–Stoney, is that proven? My fear is taking something that will harm my liver or take down my immune system. My WBCs are already low and I avoid sick people like the plague…I think I’d have to live in a bubble if I took more meds that were harmful to the immune system. Plus, the SEs many people seem to have from them…
…and Seenie, there may be something good on the horizon for us???
Thanks for your note, Stoney.
I would have to think long and hard about taking meth (otrexate). I suffered for years, refusing to try it. I came close a couple of times, but had a friend who was taking it for rheumetoid arthritis and was sick for a couple of days a week after ingesting it. Because I’ve also been lucky enough to have epilepsy, I take another medication, and don’t want to further risk my liver and kidney functions. So I would say “no,” but not “never.”
Thanks for the encouragement, Seenie.
Mark Zuckerberg has promised to end all disease. I hope he’s including PsA!
Grandma J, I wonder too what happened with the Raptiva fatalities. Of course, I was happy that my test had a better outcome. But Raptiva had another flaw, as it worked somewhat differently than other biologics. If I skip a few doses of Humira, my symptoms will gradually reappear, although not to near the full extent, or I should say that I’ve never been off of it long enough for that to happen.
Raptiva worked like a dam. It suppressed and suppressed, but if you skipped a month (I once had to), it flares back up quickly and with a vengeance. The outbreak could be more severe than it was when you started the injections. So even if Raptiva were still on the market, I would have switched over to something else.
Unfortunately I teach English to students who come in with colds and flues, coughing and sneezing in their hands. I’ve been surprisingly lucky. I was out once this year with a cold, but that’s par for the course for a non-PsA.
In terms of taking MTX with a biologic, there has been some evidence that for a small group of people (we don’t know who exactly, though some studies suggest it’s irrelevant for those of us with the IBD sub-type), it does slow the production of antibodies to the biologic, therefore makes it work longer. Probably more relevant with non-human biologics (like the mouse heads of remicade), but it’s all a bit unclear as of yet. To be conservative, here in Aus you need to take a traditional DMARD (MTX or Arava) with your biologic, or they won’t fund it through the PBS (which is our version of public insurance).
Sure hope so, Grandma J! I’m incredibly grateful for biologics. My mother-in-law had terrible RA, and finally died of prednisone overuse, every joint in her body wrecked. I used to say that I didn’t care what disease I got, as long as it wasn’t RA. Ha! well, I guess I got my wish. Each time I curse the meds I take for PsA (it happens a lot, I’m sorry to say) I remind myself of what life without biologics would be like.