Thanks for the encouragement…Maybe I need to look for another rheumatologist but that means back to the GP to get a referral to stand in line for six months. I have been “patient” with her as she has been practicing for only about 2 years, seems a bit insecure in her own decision making. I really bottomed out last week and now seem to be pulling out of a real bad flare. I’m pretty slow to get a grip on a flare as just that…I tend to think it is my new normal right away. Mind you, when I feel pretty good, I think that is my new normal. Sheesh…you folks are dealing with a looney!
Well, if that’s the definition of a looney, we all have plenty of experience dealing with loonies - or at least I do, everyday when I talk to myself! Don’t worry, you aren’t the only one who jumps on the “new normal” assumption a little too quickly! I’ve been doing this for 8 years and still do that
And I’m with Sybil and Seenie. The studies are even consistent with Sybil’s statement that the majority don’t get much better on traditional DMARDs - if you did, you’d frankly be unusual for PsA. The RA guys sometimes get much better with traditional DMARDs - which is who they were designed for after all - I sometimes wonder if some of these Rheumy’s didn’t wish we had RA as then we’d be more straightforward to treat… (I’ve got a GP clinic that seems to wish I was easier at the moment, I’m practicing my patience).
Yeap - I’m also with @Sybil, @Seenie and @Jen75! It sounds like you need to be educating your rheumy as much as trying to get to grips with this disease yourself. Not an enviable position to be in.
If she does keep going down the path of why haven’t the DMARDs made you alot better, ask why then do so many biologics for PsA then exist if us poor patients are supposed to do better on DMARDs? Call her out when she’s being so irrational.
However I do hope the leflunomide actually does something for you. It might do but like the others I wouldn’t be holding my breath. However she’s saying - try for only 3 months. So next appt, go armed with research about how biologics treat us so much better and you’ve now done your time on DMARDs as your country’s funding model requires and you’re not happy doing any more such time.
And by gosh you’re not a looney. If you are, that makes us all loonies too. And we’re not! Not really. It also took me a long time to understand how PsA could move around so painfully - but it does - it’s one of its defining characteristics. The further hand and foot x-rays might nevertheless be helpful to compare to your baseline ones.
Been there, done that - exactly the same time frame. Best thing I ever did.
There again, if your rheumy holds to the 3 month trial that could be worth it too, as @Poo_therapy says. But will she?
In between being a looney (also a proven symptom of PsA at the stage you’re at) make a decision based on everything you know about this rheumy and anything you can find out about others within travelling distance. Could consult GP to see if they have a recommendation re. another doctor.
I had hair loss with leflunomide too. I had to go off it after 8 months due to neuropathy and my hair grew back in slowly. It looked fluffy, with the shorter hairs growing out at the roots!
My rheumy persuaded me to try the leflunomide again this year and it didn’t cause my hair to fall out (yay!). It also didn’t help my PsA and gave me horrible hives (boo!). It was a lesson for me in how you can respond very differently to the same drug at two different times. Didn’t suspect the leflunomide of causing the rash, at first, because it didn’t cause it the first round. Tried everything environmental and dietary to for the rash to no avail. But as the leflunomide washes out of my body, the rash is gradually subsiding.