Conflicting advice

[margiebell4]

My new GP told me to stop taking my Pred. I had managed to reduce to 0.5mg and was fairly comfortable. I have OA in my hips. When I came off Pred my knees , arms and shoulders became painful. I asked if I could go back on steroids and he said that it was OA in my other joints which had been masked by steroids. A few weeks ago I had a visit to A and E and told the doctor the story, she said steroids wouldn’t mask OA pain and gave me Pred there and then. I asked if I could try 5mg Gradually the pain in my arms and shoulders has virtually gone. My GP isn’t happy and says I have to reduce and come off it again. I’m confused by this conflicting advice.

[HeronNS]

Your doctor, I regret to say, is wrong. Pred does mask OA, but only at much higher dosage than .5 mg. I have extensive OA so I know what I'm talking about. In fact I have more problems with OA just at the moment than I had before pred currently trying to get back from 3 to 2 (that's another story, I could shoot my old doctor) and the pain is helped by aspirin and even tylenol, which never used to do anything for me, so I know that part of my misery is not PMR. But when I went to zero after a very slow taper to zero with zero as my new dose using Dead Slow Nearly Stop, I was fine with virtually no pain, only the usual stiffness in the joints which OA causes until I'd been at zero for several weeks and undeniable PMR symptoms came back. If your pain has been controlled so handily by 5 mg pred I think that really confirms it's a PMR flare. It may take you a long time to get back to your .5, but go very slowly, the lower the slower, and you should get close. Why a doctor would insist you take no pred, not even half a mg, is a real shame.

[margiebell4 in reply to HeronNS]

Thanks, he told me to reduce 1mg each month which I think is far too fast. I used the Dead Slow method to get to 0.5 so I’ll do that again if I can get him to prescribe them for long enough. Could do without this battle!

[PMRpro Ambassador in reply to margiebell4]

Try going down to 1 or 2mg quickly - if it was enough before it is probably enough now. As long as you haven't been back at 5mg for more than about 3 weeks it will be fine. If he doesn't know, what he prescribes will last a lot longer.

[HeronNS in reply to margiebell4]

Reducing by .5 mg steps every six weeks is much more likely to get you back to where you were.

[Amkoffee in reply to HeronNS]

I have had to stop my prednisone because of osteoporosis and I have found that Excedrin works pretty good. And it has aspirin Tylenol and caffeine in it. I still have a lot of pain but this helps my OA and my PMR.

[HeronNS in reply to Amkoffee]

I'm having a good day today because yesterday I had a strange headache and took aspirin just before bedtime. This means I have to sit up and I ended up trundling with all the pillows I need for my poor knee from bedroom to livingroom sofa and then slept so soundly I woke up over an hour later than usual with hardly any pain at all anywhere. I wish aspirin didn't interfere with cartilage renewal or cause stomach bleeds. It works so well as an analgesic. I use it only when I have to.

[Constance13 in reply to HeronNS]

I agree! Aspirin is such a fantastic pain killer - one which I haven't tried again for years (I had a stomach bleed - so never again). Pity!

[Amkoffee in reply to Constance13]

I have chronic gastritis and oddly enough it doesn't bother my stomach. However it may come to pass eventually. But for now I take 2 medicines for my stomach.

[PMRpro Ambassador]

There are far too many GPs (and rheumies) who don't appreciate that even 1/2mg is enough to keep PMR at bay and if their patient is doing well on that, they should leave well alone. Prof Dasgupta now says he often leaves patients on 2-3mg indefinitely as it reduces the risk of relapses. If 1/2mg is enough - why complain? As HeronNS says, pred can help mask OA pain - but usually at much higher doses than 1/2mg and if 1/2mg is doing it - what can he offer you that is as innocuous as 1/2mg pred?

Try a different GP.

[margiebell4 in reply to PMRpro]

Thanks I’ll try a different GP.

[HeronNS]

In response to DadCue's interesting comment, my knee got injured some time ago, while the world was in first lockdown, and subsequent routine blood tests have shown my inflammation markers increasing almost in lockstep with the deteriorating condition of that knee. My current doctor denies that this increase in CRP has anything to do with OA (it's higher than it's ever been, even pre-diagnosis days of horror) but PMRpro found a link, and I know there is more info, about research showing osteoarthritis in its active phase can cause raised inflammatory markers. However from your description of your symptoms it does seem more likely that you are having a PMR flare. As my knee is now improving (she touches wood) I shall be interested to see if markers improve too. Unfortunately I'm under instructions to halve my current dose of pred in the next six weeks or so for another reason, so I have some doubts that's going to help CRP come down! One should never change more than one thing at a time....

[DorsetLady PMRGCAuk volunteer]

I would imagine your GP is of the opinion that your PMR has “gone” as you have had it for so long..........but from your reaction when you came off the Pred it would appear he is wrong.

Like HeronNS, my OA pain was masked by high doses of Pred (had GCA) - but it certainly came to the fore on lower doses.....so I doubt very much that 0.5mg masked it at all.

If 5mg has helped I would also doubt that your pains are totally OA (certainly on my experience) but it may be a combination of both that and PMR.

Would suggest you follow HeronNS advice and reduce slowly- of course the issue may be getting your GP to prescribe the medication.