Next steps?

[Griggser]

Well I’m struggling! About 3 years in on this journey and on 12mg of pred and 400mg of hydroxychloroquine from original start of 15mg of pred only. Lots of ups and downs along the way. I haven’t felt the initial relief I got with 15mg of pred for quite some time now which is very frustrating. Don’t get me wrong I can do a lot more these days but am in constant pain in my hips, sleeping is problematic to say the least. Driving for an hour means I’m very stiff and struggle to walk for a minute or two. I have written to my rheumy and he replied that he hasn’t anything he can suggest to me although he’d be happy to discuss it in clinic. I’m not sure I see the point in this other than handing more money over!

So I’m at a bit of a loss, he has had me try quite a few different steroid sparingly drugs which either made me ill or made no difference.

What should I do? I don’t want to increase the preds anymore but also can’t see how I’m going to get any lower!

On a positive I suppose, I don’t have brain fog and no longer have the same level of “I can’t be assed to do anything”.

Any suggestions

[Hidden]

Hi Griggser,

Do you definitely have PMR? Have they ruled out other auto immune diseases such as Ankylosing Spondylitis ( AS )

The reason I ask is that AS can cause hip pain which is worse in the night and stiffness which worsens after any period of inactivity.

Have you ever had any scans on your hips etc?

[Hidden in reply to Hidden]

Worth a read

hindawi.com/journals/isrn/2...

[Griggser in reply to Hidden]

Thanks for quick reply. Initial crp level was 64 and 15mg of prednisone made me pain free within 8 hrs of taking it. This along with markers being raised when pain has returned and a period of higher dose following a flare have pretty much convinced the rheumy, and me, that PMR is the correct diagnosis. I’m going to arrange more blood tests to see what level I’m at now. I guess I then need to have a chat with my GP.

[Hidden in reply to Griggser]

The problem is that other auto immune/ auto Inflamatory diseases will present with raised CRP and respond to pred.

I am not saying you don't have PMR but if you are an atypical responder then the diagnosis should be re visited.

I had Classic symptoms of PMR, my pain and stiffness were so bad that I had to crawl up the stairs and couldn't get into bed. 15mg of pred really helped my symptoms as well but my diagnosis ended up as AS and I was on pred for 2 yrs unnecessarily. I know of one other person with a similar history . The other rule out needs to be GCA with large vessel involvement but not cranial symptoms. Perhaps a second opinion is warranted?

[PMRpro Ambassador]

Has anyone considered the hip pain and stiffness could be trochanteric bursitis? because what you describe is exactly how it gets me - and once it is dealt with in a targetted way, I get the oral pred dose down. It took me well over 4 years to get below 10mg until the bursitis was sorted out with steroid injections and accompanying myofascial pain syndrome which was causing spasmed back muscles also deal with. I had also had a high dose infusion of Medrol for the myofascial pain syndrome - and I really don't think the smoothness of the rest was coincidence. I'm far from convinced starting at 15mg is always a good idea.

And Keyes has covered the other thing I was going to say - not PMR????? Or not "just" PMR.

[Griggser in reply to PMRpro]

Thanks PMRpro. I think a visit to the GP with these concerns and see if we can get a second opinion. Would you get relief from tronchantic bursitis with pain killers? I know they don’t help with PMR.

[PMRpro Ambassador in reply to Griggser]

Not sure to be honest - I couldn't use NSAIDs anyway but they might help.