Almost wish it was PMR......

[Pristina]

So, following on from my do i / dont i have pmr, i had my follow up appt with rheumy on 6th June, having tapered from 30 to 0 pred over 6 weeks. In my last week all my aches and pains came back, even ones i hadnt thought about such as sausage fingers, stiff lower back, pain in sacroiliacs, neck ache, but most of all, the full on frozen shoulders abd arm pains / soft tissues / tendonitis etc came back full on so that i couldnt raise my arms or reach for the phone at work etc.

As i am going on holiday this week to Tarifa, he has agreed to put me back on pred 30mg reducing 5mg per week to zero, just to get me through holidayreasonably pain free, but he doesnt think i have pmr (nor did you, PMRPRO)! His letter to my gp said he was going to start me on dmards when i see him in 4 weeks, but in meantime to have another mri to check for sacroiliitis and another blood test.

Whilst i was on pred, my esr had gone up to 20 but my crp had cone down to 7 (from 20). I have had iritis (years ago) and now left eye is weeps and eyelid droopy.

I think he is thinking along lines of AS or perhaps sero negative RA. He is a bit confounded (is that a word) but is still throwing everything at me to try and come to a conclusive diagnosis.

Have to say, pred is infinitely preferable to dmards from what i can see .....

Jane

[PMRpro Ambassador]

Sausage fingers? Typical of spondyloarthropathies. Did you mention them before? And sacroillitis etc.

Not necessarily - some people do wonderfully on DMARDs. And the spondyloarthropathies sometimes qualify you for biologics quickly.

[Hidden in reply to PMRpro]

Dactylitis ( sausage finger ) is more commonly associated with psoriatic Arthritis. Pred and DMARDS aren’t used in Ankylosing Spondylitis as there is no evidence for efficacy, it’s usually NDAIDS and then Biologics.

There are new imaging guidelines for MRI to detect AS, it’s important the scan is set up the right way.

[Pristina in reply to Hidden]

He kept asking me if i had ever had psoriasis, and i said no. I didnt mention trigger finger either which went on preds. I think a siggestion of myasthenia gravis has been mebtioned but he is going to refer me to neurologist when i get back. He is exploring all avenues!

[Hidden in reply to Pristina]

Psoriatic Arthritis can be challenging to diagnose, I think that you can have it without ever having psoriasis but it’s rare.

Whilst AS symptoms usually build up over a few months I was similar to you and had a very quick onset of bilateral hip and shoulder pain, weight loss, anaemia, fatigue etc.

Eventually ( after 4 years ) I was diagnosed with an Ankylosing Spondylitis/ Behcets Syndrome overlap. Biologic drugs and Methotrexate have made a big difference to my symptoms and I don’t have any side effects with either. There is a move away from Prednisolone to treat Rheumatic diseases as the alternatives are better, obviously not in PMR and GCA as there are very few evidence based alternatives.

I hope you get a diagnosis and effective treatment soon.

[Pristina in reply to Hidden]

Thank you, that is helpful. He does seem really keen for me to be off steroids, but reading about Dmards their side effects looks scary, particularly when, i presume, it is long term (im in my 50’s).

[Hidden in reply to Pristina]

Hi pristina, I have been in a dmard as a steroid sparing agent for almost 2 years now- mycophenolate or cellcept. Obviously it just one example and I know different people have different responses to any dmard. I found the first 8 weeks really tough as I went through the variable dosage period. Once I reached my full dose I was fine. As I say different dmards for different conditions have different unwanted effects. Nevertheless I thought I would mention it.

ncbi.nlm.nih.gov/m/pubmed/8...

[Pristina in reply to PMRpro]

Thank you. Hopefully a diagnosis soon. I think the thing that made him say Pmr in the first place was the virtual overnight flare of shoulder and neck pain and stiffness, but there is a lot going on ...

[piglette]

I don’t understand why he is suggesting you start at 30mg again and then go down to 0mg. Isn’t that history repeating itself and you could be in the same position again? Perhaps he is hoping a scan will determine AS.

[PMRpro Ambassador in reply to piglette]

Just to cover the holiday - a rheumy did it for me. Needs to be a highish starting dose to get a quick response but you can taper quickly safely too.

[piglette in reply to PMRpro]

Ahh that makes more sense.

[Hidden]

It's all very complex and I am sure worrying, but, hopefully, you will have a little space now to put it aside until you return. I hope you have a great holiday in the meantime. 🌻

[Pristina in reply to Hidden]

Thank you, i will. Def need it!! Will update after next appt on 29th june i think.

[Hidden in reply to Pristina]

Please do. 🌻

[davidem]

Not being qualified to answer I can only tell you what I know by experience.

If on start up (first dose) of say 15 - 25mg Prednisolone there is not an immediate difference, the whoopee, sort. Then for me not sure you have Polymyalgia Rheumatica [PMR] . Steroids are instant and obvious in their relief.

The secret is to always be ahead of the beast. Take pills last thing at night and wake up on top of it. Always take just that ‘tad’ more than you need, never ever taper too quick . . . the slower the better.

For all the will in the world we need our doctors and we need our consultants but at the end of the day it’s our bodies that are ill! It’s us who hurt and are in pain!

[PMRpro Ambassador in reply to davidem]

"Steroids are instant and obvious in their relief."

Not always, up to a week is fine - and anyway, the dose must be enough but not too high. That is the conundrum!