Palendromic rheumatism

[Elmo333]

Hi All. I was v.scared about seeing my consultant again bcos I've heard a few negative experiences especially when the symptoms don't fit perfectly with expected. Anyway, I told him my difficulties and said, I know it's complicated. He said, " it's not complicated at all", which I found greatly reassuring! He said that what is going on is palendromic rheumatism and that if we can get the RA under control then the PR will disappear! I thought it was just PR that I had but he says it's both. I've been on ssz 3 a day for about 8 weeks which I didn't think was helping but now, im getting the same moving around pain but it's manageable (I can dress etc). This is good progress. As PR doesn't actually destroy your joints, I think I'm going to stick with the meds I'm on (ssz+mtx). Im just a bit confused as when I think about my issues, they all point to PR and nothing really of RA. I think he thinks RA because I have positive RF and anti CCP. Do any of you have palendromic rheumatism with positive blood results? Long post...forgive me! Tia

[AgedCrone]

I started my Rheumy journey with PR 18 years ago......I'm still here with full blown sero+ RA......very little joint damage & from what I read here I have been very lucky. I remember when I was first diagnosed spending days in my PJ's because I was in such pain I couldn't move my arms to get undressed/dressed.

Your Rheumy is basing his opinion in what he sees in your blood test results, not just on what he thinks is happening.

PR can just work its way out of your system, or it can develop into full blown RA....my rheumies have told me there is no way to predict how it will go....just watch, control & wait.

I went through various Dmards, & am now on Retuximab.....it's 2 infusions 2 weeks apart every six months & apart from getting very tired I lead as normal a life as friends of my age (I'm now retired) who don't have RA.i have very little pain, but if I overdo things I suffer for it with pain & stiffness, but nothing like the excrutiating pain I had with PR.

So try not to worry....RA is a very difficult disease to control & predict , but a lot of us manage to lead a very normal life.

The one thing I avoid as much as possible is stress......I really do believe it has an alarmingly detrimental affect on RA symptoms.

Wish you well.....stop worrying .....you seem to have a sensible Rheumy who is doing all the right things.

[Elmo333 in reply to AgedCrone]

Thank you so much Agedcrone. I've woken up this morning and literally can't bend my leg at all-so painful! You responded in such a gentle way and I truly hope that things improve. I'm only 34. Thank you x

[AgedCrone in reply to Elmo333]

Sorry to hear you are still getting the PR aches & pains! I well remember going from room to room during the night, sitting in different chairs, even sitting on the stairs trying to get in a position where it didn't hurt!

I knew nothing about any sort of arthritis when I was first diagnosed, & just went 'with the flow' taking the drugs & injections my rheumy advised.

I did have Prednisoline for a few DAYS....but it sent me loopy,so I came off it forever. I think it's the drug from hell, so if at all possible try to stay away from it!

Have a restful day today....hope the pain passes quickly this time. I sometimes had pain for just hours, but other times for days. Take care....it will get better!

AC

[Downtime in reply to AgedCrone]

I don't have PA and have had RA for 3 years. I had a steroid injection which made me actually feel completely normal for around 2 months. I started playing golf again and did some serious walking regularly. Now it's wearing off I feel awful. I feel foggy and slow . My knees are swollen and everything hurts. A case of definitely overdoing things, how stupid was I.

I completely agree about stress Agedcrone It doesn't seem to need much to start me hurting. Even if I'm looking forward to something, if I'm slightly worried it starts.

[AgedCrone]

Before I got settled on a Biologic that seems to suit me I found steroid injections a great help....I had about three in a year getting over the nasty side effects of the latest Dmard.......

Unfortunately it's a slow business finding just the right mix to keep you comfortable .....I call it trial & error, but maybe that's a bit cynical.

Can you get to see your Rheumy or the Rheumy nurses to see if they can tweak your meds ....there doesn't seem to be a one pill forever solution for RA.

Hope things improve soon!

AC