Am I weird (i.e. even weirder than my nearest & dearest think) in that my one main problem is swollen joints? I don't have much pain & mobility is usually okay-ish. Yep, brain fog - but that comes & goes. Possibly a spot of depression but I've always been a bit of a yo-yo & am often happy too. Other than that I have chronic but mild anaemia.
Does anyone know (or have their own views) about the significance or consequences of persistently swollen joints? I've just got so used to being curvy in all the wrong places! I'm now on my third DMARD and they all seem to help, for a while, with everything except swellings.
This is a question I intend to ask my rheumy when I see him at the beginning of May, but chances are there won't be time for much discussion and anyway it seems a good idea to clarify my thoughts here with your help, if possible.
So a few thoughts pop into my head. When swelling lands in a joint and stays there, you can be experiencing significant damage, even without pain. It could also be soft tissue swelling, but I'm wondering why this doesn't seem to be responding to DMARDs. Have they had you on multiple DMARDs? Is it time to consider a biologic?
Have you had imaging done to confirm any level of damage to the joints?
Swelling was primarily my only symptom as well for awhile. I started with pain in my left hand. The fingers swelled to the point that I had to get my wedding band cut off. My wrist was swollen as well. Methotrexate did nothing for me. Once I started Humira the swelling went away, but now the fingers in that hand are stiff and only bend minimally at the top joint. Only my thumb on that hand is fully mobile. Biologics have kept the swelling away, but my right hand started getting stiff on both Humira and Enbrel. Fortunately, I'm having better results with Simponi,
Sybil, my friend....it is not unheard of. Unfortunately I have run the gamut of DMARDs and Biologics, but the bursa of my left knee has remained persistently and annoyingly swollen. I don't wear shorts or skirts because of it...I look like I have elephantitis of the knee. Of course I also now have a ridiculous amount of Psoriasis on my legs too, so even if the swelling miraculously disappeared I still wouldn't wear anything that shows the legs...
I have done MTX/Humira, MTX/Enbrel, MTX/Enbrel/Sulfasalazine, Remicade/MTX, MTX/Sulfasalazine, and scores of runs of Prednisone and Dexamethazone. I've even had steroids injected directly into the bursa. Nothing has worked. I think you should have a long and serious talk with your Rheumy...then come back on here and tell me exactly what he/she said so I can have another go at mine. :)
All kidding aside, though, it is true that you can have serious damage occurring even without pain, so it might be time for an MRI, or at least a series of multiple view X-Rays to determine if there is damage, and how bad the damage is. I would certainly request images before starting a biologic if you aren't already taking one. If it is only soft tissue inflammation and it isn't causing damage, and if everything else is under control, I'm not sure I would be so keen on dealing with the added side effects of biologics, but that is only my humble opinion. Of course, if your Rheumy decides that damage is likely to occur, jump on the biologic bandwagon in a heartbeat! It would be awesome if you could get everything into remission (my fondest dream).
Though I can’t add much to the swelling discussion (I never look very swollen, and it is the first thing to go of me when adding a dmard that works - in my case biologics), I would encourage you to get the bone scan. I’m about a point off osteoporosis of the spine (though my hips and limbs are fine). Don’t really know if its from steroids or PsA - IBD overlap, but it is certainly worth knowing about!
Edit: I got that scam at 36, have alwYs had plenty of dairy and worked outside a fair bit (Vit D), so had no other known risk factors. Hopefully yours would be fine, but better to know.
I certainly understand what you mean about the X-rays. When we are all told that we have a higher cancer risk too. I’ve had my fair share of the silly things. It’s probably worth knowing that the majority of bone loss happens in the first 3 months of steroid use, though it can be negligible at low doses of steroids. You could get your Vit D level checked first? If that’s fine then you are less likely to have issues.
sybil said:
Thanks Jen. I was keen to avoid the scan just now as I understand it involves a large dose of x-rays and I've had an awful lot of x-rays over the last couple of years. I've only had 3 months of low dose steroids plus a few injections so doubt that steroid use will have affected bone density.
But I've taken what you say on board and will see what my rheumy thinks. I don't think he'd specifically requested GP to organise a bone scan but was so assertive GP went into overdrive!
Jen said:
Though I can't add much to the swelling discussion (I never look very swollen, and it is the first thing to go of me when adding a dmard that works - in my case biologics), I would encourage you to get the bone scan. I'm about a point off osteoporosis of the spine (though my hips and limbs are fine). Don't really know if its from steroids or PsA - IBD overlap, but it is certainly worth knowing about!
Edit: I got that scam at 36, have alwYs had plenty of dairy and worked outside a fair bit (Vit D), so had no other known risk factors. Hopefully yours would be fine, but better to know.
Thanks Sybil. I've adapted, as we do, to my left hand and m right hand is still in good shape, so I manage, but like you I have to be careful not to overdo it. You mentioned Remicaide - my rheumy has seen good results with his patients on it. Good luck on getting answers to and relief from the swelling.
Sybil, I was on Remicade for about 5 doses a year ago, but had to quit because the cost of infusion was too high in Oklahoma City. Now I've found a clinic that will infuse for free, but I'm waiting for the Patient Assistance Program and the Clinic to get together and figure out what paperwork is still lacking. I'm hoping it gets sorted out very very soon, though! I'm so glad you are here. You are such a sunny person, and you make me smile every day.