Hey all,
New member. I wanted to describe my situation, partly to vent and partly to see what sort of useful responses it might generate. I know this will be long--apologies in advance!
As background, I'm 54, married, two young kids (11 and 6).
So ... I've probably had symptoms of PsA for about eight years, starting with two frozen shoulders. I suspected PsA early on (I do have plaque psoriasis) but was told by a rheumy that it wasn't.
Six years ago I had kidney cancer, which was treated successfully by removing the offending kidney. All subsequent tests have been negative and the prognosis is excellent. Only problem is that I can no longer take anti-inflammatories. Major bummer as you can imagine.
Things started to get worse about two and a half years ago. Various joints would flare up and become a problem for a while--a couple times I had to get a round of prednisone. All things considered though things weren't too bad. Worst flare up was right knee that I couldn't bend for a few days. It took a couple of months of PT to get back on track but then things were ok again. Outside of specific joint flare ups I was symptom free this whole time, so 90% of the time, I was perfectly fine.
About eighteen months ago, my rheumy finally diagnosed PsA due to very minor permanent damage in my toe from a flareup that wasn't controlled by prednisone. She suggested MTX but I was very nervous about taking anything for the PsA because of history of kidney cancer. Got a second opinion from a dermatologist, Alice Gottlieb, who is board certified in derm, rheum and internal medicine. She was very candid about the fact that there is no data to indicate whether MTX or TNF blockers might trigger recurrence of kidney cancer. I appreciated the candor and she is now treating me for PsA.
My urologist was ok with treating with MTX (waffled more on TNF blockers) which I started last fall. MTX absolutely wiped me out. I was ready for sleep at around 6pm the first couple days after taking it. Basically, I would take it Friday evening and was able to do very little over the weekend. I would be somewhat tired on Monday and fine by Tuesday. Maybe the fatigue would have been better eventually but my creatinine levels were too high (only one kidney, remember!) so I had to stop and was glad to do so.
Spent a month or so researching TNF blockers and was able to get an informal opinion from a kidney cancer specialist who said he didn't see it as an issue and that in fact TNF blockers are being researched as a possible therapy for kidney cancer.
There were a few other stumbling blocks, but eventually started Enbrel in early April. Up until then the pattern had continued that I was pretty much symptom free except for occasional flare ups, which tended for some reason to happen in August/September. The only thing was that my right knee never felt great. Didn't inhibit me at all but didn't feel great. I mention that because the Enbrel cleared that up. I really felt great on the Enbrel. Only side effect was that I didn't sleep great. A mild version of what can happen with prednisone. I slept less but seemed to do ok on less sleep.
However, the Enbrel didn't totally clear up my plaque psoriasis. Gottlieb recommended trying Humira to see if it would do as good a job on PsA but better on skin. It tends to do better on skin and only reason for preferring Enbrel was that Enbrel clears from system quicker, which could be an advantage in case of a serious infection.
Well, from the start Humira didn't seem as good as Enbrel. And after about two months on Humira I got a flareup one month ago in my left knee. Just as that was starting to improve, I began to get a flareup in my right foot (a bit diffuse but mostly ankle and ach tendon). The weird thing about these flareups are that, unlike previous flareups, they have been very unpredictable. Even over the course of the day, things will change. I was planning to walk the kids to school this AM based on gradual progress with the foot over the weekend. I went into the shower feeling pretty good. Then after I got dressed I realized the ach tendon had gotten worse and I needed my wife to drive kids to school.
Having the recent flareups on Humira, and especially the fact that they are so unpredictable, is incredibly frustrating! And remember that I can't take anti-iflammatories! I know a lot of you, if not most, have signficantly worse PsA than I do, but, I'm pretty exasperated at this point.
I'm seeing Gottlieb on the 24th and thinking I'll go back on Enbrel. (With caveat that flareups seem to come around this time of year, so who is to say i wouldn't have had one with Enbrel too.) Just praying this isn't a problem for insurance! Luckily I've still got a stash of Enbrel so I can get started quickly if that's the way we go.
Thanks for listening,
Jay