Should I increase my pred: I was diagnosed in... - PMRGCAuk

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Should I increase my pred

Sweetpeasoprano profile image
10 Replies

I was diagnosed in August 2021 with a set of textbook PMR symptoms. 15mg of prednisolone worked like magic. I seem to have avoided any weight gain, moon face etc.

When I had reduced my pred. To 9mg I put the odd niggling ache down to walking too far or picking up my 9 month old grandson too much. I also get mild sciatica, which complicates things. Now at 8.5 mg I seem to be getting those same pains, albeit very slight, that I had at the very onset of my PMR - sides of hips, lower back. It isn’t bad enough to limit my movement or stop me from walking anywhere, but I’m wondering whether I need to up my dose again. Advice would be welcome.

(I am still waiting for an appointment with a rheumatologist. I suppose I could fill in an e-consult in the hope of speaking to my GP…🤣🤣🤣)

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Sweetpeasoprano profile image
Sweetpeasoprano
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10 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

You may find a small increase helps - say up to 10mg to forestall a full blown flare - but this post gives details of what to do if it does turn into that…and also the difference between that and steroid withdrawal.

healthunlocked.com/pmrgcauk...

Do eConsult your GP suggesting a way forward to get things back under control. They should reply quite quickly - if in agreement they don’t necessarily need to speak to you.

Although you’ve managed quite well DK far might also be worth considering a slower tapering method -

Couple to choose from or devise your own -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Sweetpeasoprano profile image
Sweetpeasoprano in reply to DorsetLady

Thanks for the quick reply. I think 10 mg may be the answer. I have just filled in an e-consult form, but the reason I put 🤣🤣🤣 is because the usual response is to tell us to phone the practice, which results in about an hour of recorded music. When I do talk to my GP I find that the lovely people on this forum know more than she does.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to Sweetpeasoprano

That’s not how it should work, well not for everything…if it’s a simple question….with a proposed remedy, all the GP needs to do is reply yay or nay!

I can understand if it’s a bit more complicated…..but the idea of eConsult is to speed up and simplify the service for patients, and staff….

Sorry did I actually say that! 😳 😂🤣

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

What world are you living in?????

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Deepest, darkest, Dorset……where it actually seems to work surprisingly….but then I no longer have complex issues, so that’s probably why. BP readings submitted on a regular basis, repeat meds requested online …oh and Shingrix vaccine (did have to ring for appointment once approved).

Never had it so easy….ssshh

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

That's asking for trouble ...

PMRpro profile image
PMRproAmbassador

And always remember - you are not reducing relentlessly to zero - you are adjusting (titrating) your dose to find the lowest effective dose that manages your inflammation and therefore symptoms as well as the starting dose did. To be down to 9mg after 6 months is pretty good going.

I'd wonder if your sciatica is linked to myofascial pain syndrome - often linked to PMR, My PMR reflects both and if one is not as well controlled as I'd like, the other makes itself felt too. It causes spasmed back muscles and the sciatic nerve passes through the piriformis muscle which is often affected.

Sweetpeasoprano profile image
Sweetpeasoprano in reply to PMRpro

Thanks PMRpro. That makes a lot of sense. When all this started, piriformis syndrome was suggested by a friend who is a nurse. It seemed to fit the symptoms until the full blown PMR developed. Interesting that they are all linked.

PMRpro profile image
PMRproAmbassador in reply to Sweetpeasoprano

Given that piriformis syndrome is one part of myofascial pain syndrome - have a look at this:

jrheum.org/content/jrheum/4...

I was really quite excited when I got hold of this from Claire Owen - I'd come across the idea from a German orthopaedic specialist who gave a seminar where my husband was working in Innsbruck some years ago - my husband came home and said "this is you" as he gave me the handout. The seminar was repeated at an international meeting a year or so later which I was able to go to and we had quite a long discussion about it and PMR. Fitted everything! I wasn't making it up!

Sweetpeasoprano profile image
Sweetpeasoprano

😂

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