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Anyone take a bazillion meds for psoriatic arthritis (PsA)?

Posted by @chybaskids @chybaskids, Jul 12 1:50pm

Anyone take a bazillion meds for PsA? I’m on Rinvoq, methotrexate, hydroxychloroquine, folic acid, etc.
Do your meds actually work for you?
I have my ups and downs with regard to pain but my hands and wrists seem not to join in the process.
I’m 75 and long ago I was a gymnast and very athletic. Now with 5 body parts replaced, spinal fusion, plus a neck that’s fusing itself I’m kind of getting weary of trying to keep up with this body of mine. Plus I do suffer after doing sometimes the simplest activities.
Plus I have narcolepsy which adds a new dimension. I have been falling lately (don’t worry I see and share with my doctors) but the last one where I fell backward and hit my head quite hard has pushed me over the edge. How much should or do I ask or tell here? So I’ll stop now.

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njbay | @njbay | Jul 12 7:39pm

For a little while, I was taking Humira every 10 days, methotrexate, folic acid, and steroids. This dosage of Humira plus methotrexate helped my skin tremendously, and I needed the steroids for an inflamed knee plus enthesitis. All of it actually helped me, but then my pharmacy said I couldn't take Humira every 10 days anymore. Then later on, they stopped filling Humira completely and made me switch to something else. I went on a biosimilar called Hyrimoz, but that did not work like Humira did. At one point, I had to stop taking methotrexate due to the side effects, and my skin started getting worse. I also had sacroiliitis and had to get more steroid injections for that.

A few months ago, I was switched to Cosentyx, which does not seem to be working either, at least not for my skin. My skin is getting worse & worse. I already tried Skyrizi in the past and that didn't work at all - not for my skin, nor for my joints. My knee exploded with inflammation while taking it and my skin got worse.

I also have osteoarthritis in my spine, but I suspect that PsA might also be affecting my spine, at least somewhat. When I first took Humira, a lot of the inflamed feeling I had in my spine went away. My right shoulder pain completely disappeared, too. For about a week or so after taking Cosentyx, my neck pain is somewhat relieved, but it gets worse again as time goes by until my next injection. Of course it's summer, and now I'm getting psoriasis plaques back on my arms (among other places), but I did have a while where I was able to wear short sleeves (while on Humira), soon I won't be able to again.

I know how you feel with all of the pain, meds, etc. It does get tiring after a while, and for me now, defeating, because I can't take what helped me the best, but I am not going to give up. I have a doc appointment in 2 weeks anyway, so will discuss what I can do next. I know there are other drugs to try, though they are limited by my pharmacy's approved drug list.

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@chybaskids | @chybaskids | Jul 13 10:37pm
In reply to @njbay "For a little while, I was taking Humira every 10 days, methotrexate, folic acid, and steroids...." + (show)
Profile picture for njbay @njbay

For a little while, I was taking Humira every 10 days, methotrexate, folic acid, and steroids. This dosage of Humira plus methotrexate helped my skin tremendously, and I needed the steroids for an inflamed knee plus enthesitis. All of it actually helped me, but then my pharmacy said I couldn't take Humira every 10 days anymore. Then later on, they stopped filling Humira completely and made me switch to something else. I went on a biosimilar called Hyrimoz, but that did not work like Humira did. At one point, I had to stop taking methotrexate due to the side effects, and my skin started getting worse. I also had sacroiliitis and had to get more steroid injections for that.

A few months ago, I was switched to Cosentyx, which does not seem to be working either, at least not for my skin. My skin is getting worse & worse. I already tried Skyrizi in the past and that didn't work at all - not for my skin, nor for my joints. My knee exploded with inflammation while taking it and my skin got worse.

I also have osteoarthritis in my spine, but I suspect that PsA might also be affecting my spine, at least somewhat. When I first took Humira, a lot of the inflamed feeling I had in my spine went away. My right shoulder pain completely disappeared, too. For about a week or so after taking Cosentyx, my neck pain is somewhat relieved, but it gets worse again as time goes by until my next injection. Of course it's summer, and now I'm getting psoriasis plaques back on my arms (among other places), but I did have a while where I was able to wear short sleeves (while on Humira), soon I won't be able to again.

I know how you feel with all of the pain, meds, etc. It does get tiring after a while, and for me now, defeating, because I can't take what helped me the best, but I am not going to give up. I have a doc appointment in 2 weeks anyway, so will discuss what I can do next. I know there are other drugs to try, though they are limited by my pharmacy's approved drug list.

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I was diagnosed with PsA about 30 years ago by a very attentive orthopedic surgeon. I was having what I called 'labor pains in my right knee'. It was summer and I had psoriasis all over my legs which was rare in the summer for me. My doctor took one look at me and told me he wanted me to see a rheumatologist.
At first I (think because it was so long ago), I just took methotrexate once a week.
But after many years, and my right hand ring finger starting to bend over permanently, I went from my Minneapolis Dr to one at Mayo in Rochester. Dr Michet put me on Humira which was wonderful for me for 'almost' 5 years. I had just been on a panel via 'MyPsoriasisTeam' where all the others were saying 5 years seemed to be when their meds stopped working. Then WHAM! Two months later it happened to me. Since then I've been on Remicade, Cosentyx, and now Rinvoq.
I hear you, really. I was so bummed when Humira stopped working because I had even gotten the pens that were citrate? free so they didn't sting so much.
While on both Remicade and Cosentyx, they came out with infusions for each of them. Really weird, but those were totally paid for by my insurance and medicare as opposed to paying thru the nose at the beginning of each year until I reached a certain level. I'm SO grateful now for the 'Affordable Care Act' so when I reach $2,000 out of pocket then I pay nothing. Thank God!
Why oh why did the pharmacy let you start on Humira for 10 days then pull the rug ut from under you? That's just crappy. Insurance is such a pain in the dupe! I'm hoping that you find something that works for you!
At first I did have psoriasis and the 'labor' pain knee thing but now I really don't have any psoriasis but my age spots have taken over the look.
So go for it! Who cares that you have spots? At least now days everyone 'should' know what it is! When I was first diagnosed NO ONE had a clue what PsA was! Now I feel like every other commercial mentions it. Guess I was a train blazer, huh? 😉

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