Confused

[Dewdrop456]

Well I am totally confused. Eight years ago I was diagnosed with PMR through symptoms and raised blood markers.I have slowly tapered down to 1mg of Prednisolone daily.

I had a third appointment with the Rheumatologist because I begged my review to be brought forward due to a massive flare of my PMR symptoms last November.

I have also been having strong symptoms of Fibromyalgia and he did confirm my diagnosis.

However he then said that I DON'T have PMR,it is inflammatory arthritis.

Well I don't know how he has reached that conclusion because he hasn't asked about whether I'm still getting bilateral pain, which I am in my shoulders and hips.

I do have a bit of osteoarthritis in my hands.

The Steroids definitely helped my PMR as I couldn't move in the mornings before taking them and have treated each flare with success with an increased dose of Prednisolone.

So now I don't know where I am.

I can difentrient between my Fibromyalgia symptoms and PMR symptoms but do I have PMR or not and have I actually ever had it ? Have I been taking Steroids all these years leading to Osteoporosis or could I have taken over the counter anti inflammatory drugs instead!?

I would love to hear this group's suggestions as I have been a member for 8 years and have always received so much help directly and indirectly. Thank you

[PMRpro Ambassador]

Can't think of any good reason - unless he is of the persuasion that PMR is always done and dusted in under 2 years (and that isn't a good reason either, just mistaken). You've had whatever it is for more than 2 years, ergo, can't be PMR.

However, inflammatory arthritis seems to be a new buzzword and I'm sure I have seen an article about PMR that implied that inflammatory arthritis may appear in/with/alongside PMR. It is a diagnosis that now appears on my notes - mainly to justify the use of Actemra which has succeeded in allowing me to get down to 7mg pred from 19mg some 2+ years ago. Can't get any lower, at 5mg adrenal function is pretty pathetic and at 6mg bicep tendinitis slowly develops over a few weeks which is very impractical. But my rheumy isn't removing PMR from the mix, it fitted well for many years. I don't have swollen, red and painful joints anywhere, never have, other than a Heberden's node on my right index finger but that appeared in my 30s.

And personally - 8 years of pred is preferable to the risks associated with 8 years of constant use of OTC painkillers. I have no problem with the Pain Clinic over the use of enough pred but the low back pain that has been such a trial for 2 and a half years and more recently has been very manageable with one 200mg dose of ibuprofen per day sends them into a total tiswas because of the potential kidney and heart adverse effects. Not to mention the GI tract effects - which according to my Nurse Endoscopist daughter are dire at any dose and duration.

Anyway - what is he proposing to DO about the inflammatory arthritis?

[Dewdrop456 in reply to PMRpro]

Thank you very much for your swift and detailed reply PMRpro.I do trust the Rheumatologist, he gave me time and was patient when I spoke about the fibromyalgia .

I agree about the non prescription drugs ,of which I can't take Ibuprofen anyway because of Asthma and I have made my peace with the necessity and benefits of Prednisolone .

Like you, I don't have red swollen joints .I just have soreness at the base of my thumbs.For the last few weeks my hip joints have both been sore. My inflammatory markers are raised and I have not felt perfectly well since I flared so badly in November. I definitely know the next day if I have been too busy.

Anyway the Rheumatologist has recommended that I keep to 1 mg of Prednisolone not for PMR but for the steroid responsive osteoarthritis. How can he tell the difference? I wouldn't have said and have not said anything to make him think about arthritis apart from my thumbs.

He has said that I can see him again in 6 months to review because he still wants me to start treatment for osteoarthritis which I have refused so far because of the side affects. But I will ask your advice about this in another post if I may?

Of course I don't want to have PMR but ???????? I think I do, as I feel the same .

Many thank you.

[PMRpro Ambassador in reply to Dewdrop456]

"he still wants me to start treatment for osteoarthritis "

OSTEO or INFLAMMATORY arthritis? There is a difference.

[Dewdrop456 in reply to PMRpro]

So sorry. I was in a rush this morning to take my mother to the Doctors. I meant osteoporosis whether I typed it wrong or it auto corrected I don't know.

[PMRpro Ambassador in reply to Dewdrop456]

That's fine. If you really do have an inflammatory arthritis then you probably do need a DMARD to reduce the risk of joint damage long term. Mind you - I would want more proof because all you describe could be due to PMR. It gives me aches at the base of my thumbs.

[Dewdrop456 in reply to PMRpro]

Hopefully I don't have it because the DMARDs sound awful! Thank you for your advice.

[PMRpro Ambassador in reply to Dewdrop456]

Not necessarily at all - many patients take them and have no problems at all.

[bronigel in reply to PMRpro]

Hi PMRpro, I just wondered if you’d found any links to the article you mention about having PMR and inflammatory arthritis/ late onset RA at the same time? I have just been diagnosed with this, though the Rheumatologist is awaiting the anti-CCP results. I think he is basing this diagnosis on a lot of synovitis in my wrists and fingers, in addition to all the classic PMR symptoms. However when I Google it, so many articles imply you can’t have both.

All been a shock as my husband has been on this forum for years with PMR (Nidgey)☹️

[PMRpro Ambassador in reply to bronigel]

No, must try and find time to have a look, I had a lot of synovitis in my wrists at the start - but synovitis is definitely part of PMR so that might be an overlap. Trouble is, even anti-CCP isn't 100% reliable - unless you assume anyone with it will definitely develop inflammatory arthritis if they live long enough!!! But then - does it make sense to treat someone with the antibody but no real symptoms?

[bronigel in reply to PMRpro]

Thank you. I think I haven’t started on a high enough dose of steroids (15mg - CRP was 115) but he’s talking about possibly adding methotrexate straight away.

[PMRpro Ambassador in reply to bronigel]

MTX will only help in PMR ONCE the inflammation is under control. I do wish they could understand that concept. Even the wonder-drug tocilizumab/Actemra can't be relied on in GCA UNTIL the inflammation is controlled with pred. It may well do - but it isn't ethical to try TCZ alone and risk the patient losing their sight,

[Grammy80]

I think sometimes we have to remember that, though we even like our doctor, they are not on pedestals...and his declaration that you don't have PMR after all these years...just doesn't make sense to me. Your body has been dealing with this for so long, I believe you know what you are dealing with....and the LABEL he gave you at this visit doesn't matter unless it affects the delivery of the health services you need. PMRpro makes some excellent points, as usual. Do what works for you. I hope the 1mg keeps you comfortable. Our bodies talk! 💞

PS The rheumatologist I have here in Indiana is the best around, and I like him. BUT, I wouldn't be dealing with the crisis I am now if I had been managed differently. My best...

[Dewdrop456 in reply to Grammy80]

Thank you for your good advice Grammy80.It's all very annoying when our bodies let us down.I am trying mindfulness and even meditation now which isn't me but strangely it does seem to help!Best wishes to you.

[Grammy80]

About four years ago, I worked on Mindfulness and it is part of me today....at the time, the GCA would not quiet after a year, super stress with one son and just wondering how?.. How I was ever going to manage all this; it really helped. Staying in the moment and letting go of the 'what ifs' was like a horse collar off my shoulders.💞

[Dewdrop456 in reply to Grammy80]

I am getting much better at it now. I am so glad that it helps you.

[Grammy80 in reply to Dewdrop456]

.....and I hope it is a tool for you too.....if not, one will come along.💞