Amitriptyline has been a godsend to me after years of debilitating pain spasm like cramps waking me at night. Painsomnia is what they call it apparently.
That symptom is definitely for me a red flag of PsA (It’s enthesis related and often doesn’t show at all in nerve conduction or ultrasound - my scans last year being case in point here) and that you mention your inverse psoriasis and family history I would say there is a very strong liklihood that it is PsA you have Amos, albeit maybe with another form of arthritis in the mix also. My mother had OA diagnosed at age 20 and not until in her 50s when she developed psoriasis did they change her diagnosis to PsA, despite me being so completely covered in psoriasis and my grandad having Crohns disease.
That said I agree that you certainly need more answers as to what else your rheumalogist thinks it could be - given everything in support of a PsA diagnosis. If your appointment isn’t coming up for a while and you aren’t likely to be able to bring it forward you could always write to your doctor with your questions. I’ve done that a couple of times before and received either a satisfactory answer letter or a sooner appointment to discuss what I raised.
With the latest ultrasound of my hands and feet, two rheumatologist agree on PsA. Orthopaedic surgeon feels that my knees are too good for replacement or surgery. Which seems to agree with how good they are when on prednisone. So good news, no knee replacement on the horizon. Other news is that I have to run the usual course that many of you have run…MTX, an added DMARD and then then revaluate for Biologics while hoping damage isn’t progressing.
Yes, it appears to be the protocol in your country and mine. The thing is lots of people do really well on it for years. Their disease progression doesn’t overwhelm the DMARDs’ decent work and so they keep things ticking along just fine.
What I find if it helps, is that the pain increases and incapacitates along with swelling etc, long before damage is being done. That isn’t an indicator for everyone but it certainly is for me. So reporting that signifies a med review and often a med change, rather than any damage being seen. The goal of course being that damage is prevented as far as possible.
It took a long while to stop me panicking about that and also to learn what’s inflamed today might not be inflamed next month or next year. And in a way too, that helps to sort of keep you plodding on better. I honestly thought a hand and a foot would be seriously damaged given how horridly painful and swollen they were initially. But no lasting damage at all yet thankfully.
However this isn’t the same for people who have spent years trying to get a diagnosis as there given the lack of treatment, damage happens sadly as you’ll hear from so many people on here. Also some people’s disease progression is alot faster than others too. I was lucky that PsA hit me suddenly, was diagnosed really quickly and I eventually submitted to being treated too.
However with luck and regular rheumy care it is possible to keep the damage issues down again trying to ensure the damage is prevented as far as possible.
i too am going back to the rhuemy about these same issues . wrist and right foot area spiked liked over night. have been on Embrel since 2011 started with mtx then went off of that because of extreme headaches and fatigue. i know he is going to want to change biologics but which ones really help with this issue? i am also
willing to add to embrel but don’t want something that is going to hurt the GI. any insight would be
There is no one med which helps with one issue or indeed one body part. The enthesitis is due to your immune system needlessly inflaming tendons etc, sort out the immune system and you sort out the enthesistis largely too.
So what matters is how you react to the next med. Being on the same biologic since 2011 is a very long run from any biologic frankly, more so an anti-TFNa one.
i believe he going to
want to
switch me to humara but the dermatologist is saying skyrimzi or the one that starts with a c… will
let you know after the visit today