Swelling vs. erosive inflammatory arthritis. Have a question

Boomer13

Hello everyone.

I had a discussion this weekend over tea with a doctor (a GP). He kindly answered a few general questions which I now regret asking because I am even more confused than usual!

He told me because my joints have never been grossly swollen, only mildly, and the swelling I have is of entire hands, etc. I couldn't possibly have a form of arthritis that was erosive. I do have damage showing on x-ray and have had oseitis of the femurs. With my diagnosis now of PsA, and because I have all my joints affected, I'm concerned I have a bone-resorptive type of PsA (I know I need to talk to Dr. Rheum but next visit isn't until Oct).

I'm now confused because I understood that in RA at least, it is important to get started on DMARDS soon after symptoms start to prevent joint damage. I read that joint damage can occur early in disease. Doesn't this mean that joint destruction can be occurring even without a large amount of swelling? Since the damage occurs from the toxic effects of inflammation, couldn't it be occurring with minor swelling too?

Confused now, and wondering will I ever learn to keep my mouth shut!! More opinions equals more confusion sometimes, it seems.

Hoping one, or several, of you lovely people can clear up my confusion.

DebbieT

Hi Anna,

I can't answer that I'm afraid. I just don't ask all of the questions that many do, silly me!! :?

I was put on Methotrexate oral, as soon as my Rheumy confirmed my diagnosis (first time I saw her, 2nd app tho so xrays n history were done). My PsA tends to affect the bones where tendons & ligaments join them. They swell in my body & wear the bone away thru erosion that way!! I believe most of my joint involvement is from OA!! I've only had visible swelling on my entire body anywhere a few times btw but my CRP is nearly always raised even wen I was on 30mg mtx!!!

From that alone id say I've disproved his case straight away & thats wot my rheumatologist has told me
Hope that helps one way or another hun.xx

Ps. I'm so sorry I haven't replied yet ... My brain, fog!!

Kittkat

I have it(psa) in all my joints and never get any visible swelling and have damage. God I hope I don't have the bone absorption type eeeeeek!
Damage can happen with or without visible swelling.Also my friend got told by his rheumy that some people with Arthur have lots of swelling with little/ no joint damage.

dreamdaisy

I too have PsA which went unrecognised and untreated for seven years and now have OA thanks to the joint damage caused between 1997 and 2011.

Everyone's arthritis is unique to them, some may have joint damage or distortion, some don't. None of us can see into the future and what may or may not happen so just take each day as it comes, monitor your joints carefully (but not neurotically - I went thro a phase of measuring my swollen joints every day which was an utterly pointless habit) and if you feel that things are amiss then contact your rheumatology helpline. The meds are designed to slow the progress of the disease and subdue disease activity and that in itself should reduce the possibility of joint damage. DD

Boomer13

Well ok then. I'm not discussing this with GP's anymore. Rheum's only, and preferably the one consulting on my case. I still think practicing docs should be current in their knowledge if they present opinions, even over tea..... I see I still need to be more skeptical.

DD, you really had long time untreated. I'm sorry. I find this stuff really difficult to take, I must say. We really rely on docs for advice after all, and are told to do so.....The meds for controlling these diseases are only any good if the patient gets them prescribed A simple thing, one would think....Currently practicing GP's should know protocols at least, which in the minimum is, refer the patient for rheum consult who has multiple joint pain or swelling lasting longer than 6 weeks. Sounds reasonably simple...?

It's horrible not knowing what this illness might throw at you next. I know: one day at a time, lived to fullest you can, but my mind can't help going to the worst possible places and wondering on and on....ad infinitum.

Kittkat, I hope I didn't make you unnecessarily worry about bone resorptive PsA. I didn't mean to. God knows we all have enough to worry about already.

As is the usual these days, I'm learning more from my fellow patients.
Thank you ((()))

Kittkat

I think that is a good idea to be sceptical about gps knowledge about arthritis.I saw a gp who examined my joints and dismissed me because there ' wasn't much to see'. She was useless! I used to worry a lot. But at the moment I have decided not to. No one knows what is going to happen and I always live in hope things will change for the better. Got to plan for the worst hope for the best.

trepolpen

hi Boomer , no little about psa

years ago they used to get RA suffers to give talks to GP's & other doctors because how little they know about RA , it must vary how much that GP knows but if you have questions trust your Rheummy nurse / consultant , know of several people with mild RA & end up getting joint damage because they dont take DMARDS .

Boomer13

Thank you very much trepolpen, very good to know.
xxAnna

Starburst

In the nicest possible way, GPs are specialist hence why we have rheumatologists. My lovely GP calls me an expert patient and tells me that I know far more than she does. Sadly, they have little training on how to manage inflammatory types of arthritis. I know there's the 'S Factor' campaign but I feel there needs to be more general awareness.

I have seronegative RA - normal CRP (usually between 7 and 20), raised ESR (average 40s - 70s) but nothing else shows up in my blood. I don't always have visible swelling upon examination but scans have shown inflammation and I have some joint damage. From what it seems, there are some who are 'classically' RA/PsA/whatever but there is a huge group of us who have different presentations but still, we have autoimmune arthritis. Unfortunately, our diseases don't read the diagnostic manuals and follow their own paths. I'd be lying if I said I didn't occasionally get frustrated but the more I learn, the more I realise I don't care what it's called as long they can get it under control.

Take care and remember we are always here.

Boomer13

Thank you for your replies.

DD I guess I'm still in the neurotically worried stage, hadn't thought of measuring my joints hmmmmm . When I read of other's not being immediately referred on by their GP's, it really bothers me. The patient isn't always in the state of mind to question their GP. In my case, like you, the damage is done and I'm left regretting not insisting on referral sooner. What I've read in the rheumatological literature is that many GPs still aren't referring patients early enough. Bad luck if you have my signs and that type of GP.

Kittkat I think you are on the right track. I have yet to figure out the expect the worst attitude without excessive worrying/bitterness. High expectations always seem to result in big disappointment. I hope I will improve, maybe when I get on meds that actually work without having to rely on steroids. The fear that damage is carrying on regardless is making me a bit nuts at the moment. I improve for awhile then the disease just seem to redouble it's efforts to slay me. So weird, these illnesses.

Thanks DebbieT, that is what I thought.

Thank you Starburst, it's frustrating when you see GPs trying to treat people for what they think is mild disease only to find out later that they should have been referred sooner. I know it's not too common but for the individual it's devastating. I think the rheum community has lots of good info out there but still GPs don't always follow protocols. There is nothing wrong with a GP saying they don't know something instead of offering an opinion that may not be quite right. I'll rely on my rheum for advice and information. Thankfully, my new GP refers for absolutely everything and takes no chances. Too late smart is me.

There's a huge learning curve with these illnesses on top of everything else. You must learn enough so you can be your own advocate and not rely on a GP for this.

hugs, Anna