Realise now my diagnosis should be RA not PMR

[kipsky]

I’m new. 74 and diagnosed last June with sudden onset RA which was later changed to PMR when 40 mgs of Prednisolone took most symptoms away. 14 months later my knees have got stiffer and stiffer, my wrists and ankles have swollen and the wrists become painful most of the time. My shoulders stop me reaching up or out. My Prednisolone are now down to 6. I have not been able to have a face to face Rheumatology consultation since last year, but have a telephone call about every 3 months. Next one is due on Sept 30th. It does seem as though I have RA and should perhaps be given something more appropriate. Any thoughts would be much appreciated!

[Skymollie]

Hello kipsky, from my readings on the PMR site I think they would say maybe your dose is too low to cover your inflammation of pmr. They say you are not cutting steroids to 0 but to to the level where you are comfortable and feel no pain. I also was diagnosed with pmr then it became ra, doesn't seem to matter as they are all so closely related. A call for an increase or at the very least to be heard that things aren't ok would be good for you. Good luck.

[kipsky in reply to Skymollie]

Thank you for that helpful reply.

[bubblyalex]

Hello and welcome. I am very new to all of this too (I have RA) and I don’t know what the appropriate treatment is for you but I do know if it is RA the quicker you get started on the meds the better because it can take a while to find the right one/dose.

Have you got the rheumy nurse helpline number ... perhaps a good idea to contact them and tell them that you are struggling to lift your arms and so on and talk about your knees etc.

[kipsky in reply to bubblyalex]

Thanks, yes I do have the helpline number so I might give them a call.

[Lolabridge]

I got diagnosed with polymyalgic onset RA which I guess covers both! With the pain, swelling and lack of arm movement you have now got (just like I had) your disease is not well controlled.

May I suggest you contact your Rheumatology patient helpline and tell them about the deterioration. Perhaps you could arrange to send photos and they could organise new blood tests to get things moving. If you feel you can’t wait until 30th Sept do say so.

Good luck!

[kipsky in reply to Lolabridge]

Thanks, I have a prostate to be removed meantime, so I feel I need to be the other side of that first!

[AgedCrone]

When you have your telephone consult ......ask for a blood test...that should clear up your diagnosis.

You can usually get these done at your local hospital....get your rheumy nurse to send you the form.

[kipsky in reply to AgedCrone]

Thanks, will do.

[helixhelix]

Swollen joints are more indicative of RA than PMR, so it is possible you’re right and your disease has evolved. Only a doctor can tell you. But whichever it is, it needs treating! Start politely nagging your hospital to see if you can have a real consultation sooner than end September.

[kipsky in reply to helixhelix]

Ok, tho I have a prostate removal op on Sep 1st so I will get on to them once that is over.

[springcross]

Hi kipsky and welcome to the forum. I agree with the others on here, you really should ring your rheumatolgy department and explain exactly what is going on. You need to have blood tests - I have mine done at the GP surgery. I think you're right in that you should have something more appropriate for what's going on. All the best to you and let us know how you get on. x

[kipsky in reply to springcross]

Yes I agree, it is a while since I had a blood test. I do have a prostate op on Sep 1st, so need to get that over and done with before shaking things up a little.

[bubblyalex in reply to kipsky]

Although it might still be worth starting the ball rolling now so that it can all move forward quicker when you have got the op over with. There are tests and xrays that need to be done before you start meds. Good luck in your op.

[springcross in reply to kipsky]

Good luck for that.

[Slate56]

Hi and welcome your journey is exactly the same as mine which started back in November week before Xmas had hospital appointment thinking I’m being told how to come of steroids then the bombshell fell you have ra it’s been a journey but things are getting better I’m on 3 different drugs I’m lucky up here in Aberdeenshire we can email the ra department and they reply with phone call next day with help so hang on in there it will get better if you are lucky enough to get a face to face try to take someone with you if possible just to listen to what’s being said to you good luck

[kipsky in reply to Slate56]

Thank you for that. Good to hear that things are getting better for you. Gives me hope for the future!

[Sheila_G]

Hi there and welcome. Nice photo. I would advise ringing the Rheumatology helpline. You need a proper diagnosis before you can be given the correct drugs and dosage. It certainly sounds like your symptoms have increased and you need to discuss this with the specialist nurse. Good luck and keep in touch. Let us know how you get on.

[medway-lady]

I know around here it was no news medications while Covid was rampant, now not too sure but I'd suggest that you list the issues and let them know on the 30th. Here we still have no f2f appts. So it may still be a case of hanging on. 6mcg of steroid isn't much so it might be an idea to ask GP to adjust up? Pred. is the drug from hell although it can make a real difference it is hard to stop and have you taken it very slowly or just reduced over a couple of weeks? Fast reduction can really hurt, and so it is vital to get professional advice do you have an RA helpline so you can talk to a nurse for advice to tide you over?

[kipsky in reply to medway-lady]

Thanks, good thoughts. I have prostate removal surgery on Sep 1st so I think it is a case of hanging on, and keeping on the 6 mgs of Pred. I have come down slowly 1 mg a month. I can talk to a nurse specialist, last call 6 weeks ago said make sure you do have the 30th Sep call so a proper reassessment can be made.

[Hidden]

Hello Kipsy...very interested to read yours and above comments.

Me Too...diagnosed 5 yrs ago with pmr, arm pains etc, also noticed slight swelling & pains in hands was told this was irrelevant, initially 40mgs of pred'. Nearly 3 yrs on, despite still having pains, was told I was ok as bloods normal. I gradually took myself off the pred as was not doing anything.

In desperation I later paid to see another consultant.

**** MRI of hand with Fluroscopy injection diagnosed RA. ****

Sadly I now have permannnent damage to wrist joints and I think feet as was late to have treatment. My Bloods were all 'negative and interestingly I read that 20% of RA cases are negative anyway!

I started with Methotrexate, Hydroxychloroquine. am now on Mxt and my 2nd trial with a Biosimilar

Talk to your Rheumatology team. I always ask for blood results! Get a 2nd opinion if you are not happy. It is difficult to diagnose and I gather that it can be trial and error to get the right meds to suit individuals.

Goodluck, NRAS is a great resource !

[kipsky in reply to Hidden]

Thanks for telling me your story. Very helpful to hear what happened to you although I am sorry you now have badly damaged wrists. I too worry about permanent wrist damage as I do a lot of gardening and already I have to use two hands for a lot of tasks where before I only used one.

My feet are OK at the moment but my ankles are beginning to swell and for some time it has felt as if I am walking on pads.

Shoulders and knees are my main issues, but taking 6 Pred at around 9 with breakfast I notice both are easier in the afternoon and evening so I guess it must be helping.

I will remember what you say about blood tests too.

All the best and good luck too.