Hi there, I know this forum is more people with RA and not really PsA but I have found this forum to be so helpful and I am just curious about a few things please.
I was dignored with PsA last year after 4yrs of unexplained hip and lower back pain especially in the SI joints and that along with my psoriasis etc I was put onto mtx. It unfortunately wasn't enough to contol the disease so salazopyren was added. I then developed a sulfa allergy and was then increased on mtx and moved over to the injection due to the severend nausea and vomiting.
Since November my life has been standing still and I was unable to do anything. Then on Wednesday I had my new rheumy appt and she discussed fibromyalgia with me as I had 16 of the 18 markers for it. But here's where it gets confusin. .....she has since stopped my mtx and arcoxia med for 3 months. At the time I was so excited to come off the med's because of how they made me feel that I never had an questions and I have called and emailed with no response so here are my questions and perhaps someone can help answer it please:
Is it normal to stop dmards in order to see if fibro treatment works?
What will happen when I stop mtx, will my enthesitis become worse? 3 days in and my bones are aching and stiff and making the most horrendous popping and clicking sounds.
Does fibro cause high crp & esr levels?
I am so lost and just looking for some feedback and I am aware that the advice given here is just based on experience and that I still need to get a Dr's opinion but thanks in advance
Aisha
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AishaSalie33
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Enthesitis points correspond quite closely with the pressure points for fibro. As PsA causes enthesitis, confusion between the two conditions is very likely. I would be very, very wary of a fibro diagnosis .... though the combination of PsA and fibro does happen.
Secondly, I think communication between you and your rheumy doesn't sound great. Stopping meds is a big step, even if it is only for 3 months but it sounds as if there wasn't much discussion. You definitely need to get back in touch with her.
I have never heard of fibro causing raised inflammation markers.
Don't panic! It could be that what's happened could be a big learning experience that will help clarify things for you and your rheumy both. I think you were right to email your rheumy, do persevere with that until you get a response. Make sure you convey to her that what you consider to be PsA symptoms have worsened very quickly. And also that you now think that you were too hasty in agreeing to stop the meds.
In your shoes I'd keep an open mind about fibro .... but definitely cautious. If it turns out that it's PsA that has been affecting how you function so badly then perhaps what you need is 'aggressive' treatment: a biologic. And to me that word 'aggressive' means towards the disease, biologics sometimes seem to be rather easier on the body than some DMARDs. I know we're not doctors but honestly, all too often DMARDs just don't seem to cut it with PsA. If the cost of bios is what is standing between you and appropriate treatment that will help you get your life back is, then push like hell. (Politely, of course!)
Thanks so much for ur replies and encouragement. Thus far I still haven't been able to get in touch with her after numerous emails and phone calls I feel so annoyed but I am hopeful that I feel get answers soon enough. On the plus side the ametriptiline ha's already made a huge difference in the way I feel even though u feel my SI joints are now a lot worse. Thanks again and God bless
I have similar concerns, though in my case, I have just been started on DMARDs rather that having been taken off them. My rheumy initially thought OA + fibro, but my diagnosis changed to OA + RA after a hand ultrasound. I still suspect PsA because of my enthesitis and some mild skin and nail involvement, but the rheumy isn't interested or informed about that at all...
My top concern is to make sure I'm getting treatment that might help, rather than none. I understand that there's a lot of trial and error finding the meds that work best for each of us, and I don't expect them necessarily to get it right first time... But like you, after a long time undiagnosed and untreated, I'd be very wary of being taken off meds altogether. I would want to be absolutely certain that the rheumy taking that decision understood what relief the meds were/had been giving me, and what effects coming off them had. I would want communication more often than 3 monthly, at least with a rheumy nurse. I would also want to be sure the rheumy understood about enthesitis and about how it is part of PsA and can be confused with fibro (which is not true of my current rheumy!)... I have found this website informative, though it's quite technical: enthesis.org
Good luck Aisha. Like postle says, you might learn a lot...
Normally once you have tried and failed the DMARDs that are most likely to do anything for PsA (MTX and SSZ - the others generally have little effect on spondyloarthritis) and you still need treatment, then you would jump straight to being considered for antitnfs. I would be wondering if going off on the fibro tangent is a way of delaying use of these expensive meds, or its just a rheumatologist who doesn't understand spondyloarthritis - which to be fair is a lot harder to diagnose than RA. As Postle has said, enthesitis points overlap with fibro points and a rheumatologist who isn't up on PsA and enthesitis could be very likely to confuse the two (its a different way of pressing on them to actually define whether the pain is at the entheses or is more general)
Can you have a chat with your GP and ask to be referred to a specialist spondyloarthritis clinic for another opinion? Another option is to ask for a full body nuclear bone scan - this isn't the dexa scan used for osteoporosis, its where they inject you then take a full body picture a couple of hours later. Hot spots will appear on the image for a number of different reasons - for example it can show up cancer secondaries, but for our purposes it will also show areas where there is active inflammation. So if your enthesitis points and other key areas for spondy show up as hot spots, then you can throw the fibro diagnosis out the window.
A similar thing happened to me when I started seeing a new rheumatologist! I was diagnosed with seronegative RD in 2013. I went through mtx, leflunomide, hydroxy, and Humira until I finally found relief with Enbrel and sulfa. Unfortunately, after two weeks of vacation and some serious yardwork, I was in the middle of a flare when I had an appointment. Like a whirlwind, the doctor dismissed every sign and symptom that had led to my original diagnosis and labeled me with fibro. I was terrified that he would discontinue my Enbrel and I would be back to square one--because I knew that I was not classic fibro. Fortunately, he was at least conscientious enough to order an MRI of my hand to see if it showed any signs of RD damage, which it did.
But, like you, I tried to contact the doctor through emails and phone calls with no response and no luck getting an appointment to discuss/dispute this new diagnosis. So, after 4 months of gathering information, lots of prayers, and gearing up for my conversation with him at my next follow-up, I was able to be re-evaluated and he dropped the fibro diagnosis.
As with all of us, we know our bodies better than any doctor that sees us 2 or 3 times a year. Do get as much information about your condition as you can. Keep notes about how you feel everyday. Gather all previous blood test information and visit notes. Prepare yourself as much as possible and continue to try to contact your doctor. You deserve to be heard and if you are in pain, you need relief.
Hi everyone, so a lot has happened since I last posted. I eventually got hold of the Dr a month later after demanding that she get back to me. She then said the only option was to do the bone scan which I did and low and behold the diagnosis of PsA was confirmed. I found a new rheumatologist who really knows his stuff and my mtx has been upped to the maximum dose and next month he wants me to go onto Arava. Anyone have any feedback on your experience of Arava please? Thanks so much for all the feedback thus far it's so appreciated
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