Another flare up pmr

[Celticrival]

Diagnosed with pmr nearly three years ago, put on 15mg steroids, managed to come off them last December but now have a flare up. Originally at diagnosis my level was 72 last week is was 35, have agreed with doctor to stay off steroids for now and have another test in two weeks time, anyone got any advice on staying off or going back on the steroids. Thanks Suzanne

[Hidden]

Hi Suzanne

Was this a "random" blood test or are you having symptoms? From my little knowledge the bloods usually lag behind the symptoms so it be on the up but do you know what your "normal" is? I suspect I Hover around 30 on crp but as I have onky had crp/esr done since PMR. I presume you mention crp ...do you know esr? It will just help people advise I suspect.

If I was having my usual symptoms of PmR I would be hammering on drs door rather than waiting.

I am sorry you are having to think about this again!

[Celticrival in reply to Hidden]

Wthank

[Celticrival in reply to Celticrival]

Thank you for this. No it wasn't a random test, I have been having symptoms again. Had a blood test in late November as I had severe headaches and there was concern about Gca those tests were good, Crp down to 20 not sure about the other level, this was when I Cecile's to continue tapering off the press which I managed in early December. The usual pains started few weeks ago and have got steadily worse.

Am finding acupuncture is helping. Woke up a couple of weeks ago and could lift my arms up again, but it doesn't last. At the moment struggling to function so interested in the 5mg approach to try to get it back under control, have had enough on trailing round in pain and all weepy again

[Hidden in reply to Celticrival]

I bet. You know they are your symptoms of PMR no matter what Dr wants.

[PMRpro Ambassador]

Go back on asap - if you stopped pred in December this is just about the time it takes for that tiny bit of dripping inflammation to fill the bucket and overflow.

Many doctors don't believe it but 1mg of pred can be enough to make the difference. You might find that just 2mg is enough to calm it down, you shouldn't need to go back to even 10mg to get it under control UNLESS this is a real relapse and that also happens. Try 2mg first - if it works, all good.

35 is still a raised ESR - and 2mg of pred is nothing, far less steroid than your body makes naturally.

[birdwatcher in reply to PMRpro]

Hi Charlie789,

Thanks very much for your interest and concern, I mean that, but I thought I would draw your attention to the fact that I think the message you are responding to is almost 2 years old, so things have moved on considerably.

I never, over the course of the 2 years increased the dose of Pred from the 10 mg that was prescribed for me by the rheumi I was seeing. After the first 4 months with this condition I was doing fine and was showing signs of real improvement, so I started on the super slow taper reduction plan that the experts on here advise. Just before Christmas last year, still with no adverse symptoms of any kind, I was down to 2mg and about to reduce even further to 1mg and then off completely.

Then I made a mistake! I inadvertently ran out of Pred, thinking I had more stored in a cupboard upstairs. I decided not to bother with getting another prescription. After a week or two I started experience the same stiffness symptoms from prior to my diagnoses. I sought and received some excellent advice from the good people here and had their advice confirmed by my Rheumi. All this resulted in me resuming the 1 day 5mg then from there I am now on the 2mg again. At the moment I am doing fine, with no significant symptoms. I’ll see how progress for a couple more months before thinking again about reducing further.

Just thought I would bring you up to date.

I hope you are doing well.

Thanks.

Ron

[PMRpro Ambassador in reply to birdwatcher]

Just to explain why this appears out of context:

The post from birdwatcher is in response to a request by me as his comments are relevant to Celticrival's post.

[birdwatcher]

Hi Celticrival,

I hope I didn't confuse you with my above post.

When I got my inflammation levels tested at Christmas they were well normal but I was still getting symptoms. I got some advice from here to take 1 day 5mg to flush out any inflammation then resume the 2 mg. All I can tell you is that that has worked for me. TG.

I am loads better. I hope you feel better soon.

Ron.