Living in hope

[Seaglassgirl]

Hello everyone been diagnosed with PMR and started taking 12mg of Deflazacort for 4 days ..not noticed any change ..still lot of pain . Do you think I could take an extra tablet daily or do I wait it out a bit longer..many thanks Lulu

[PMRpro Ambassador]

Knowing a lot more about you and your PMR diagnosis would be helpful - the best place to put that is on your profile. Country/region and a bit of history about the PMR, how long, what the doctor has said/done, that sort of thing.

I don't think I have come across anyone on deflazocort for PMR. The doctors usually use prednisone or prednisolone depending on the country and the starting dose is usually 15mg of either of those.

"Deflazacort's potency is around 70–90% that of prednisone. A 2017 review found its activity of 7.5 mg of deflazacort is approximately equivalent to 25 mg cortisone, 20 mg hydrocortisone, 5 mg of prednisolone or prednisone,"

That means your doctor has put you on a dose that is equivalent to 8mg of prednisone/prednisolone which is nothing like enough to manage PMR at the start. You probably need double that, certainly at least 20mg of the deflazacort, to start with. Possibly more if that doesn't work but it should for most people.

[Seaglassgirl in reply to PMRpro]

Thank you ..I tried pred and didnt get along with them ..felt tired all the time so thats why im on Deflazacort but looks like they are not working for me .

[PMRpro Ambassador in reply to Seaglassgirl]

I did ask for a bit more information - it really would be helpful. Did the pred you were given work? What dose was it?

I explained in my reply above - deflazacort is a much weaker version of corticosteroid. They aren't working for you because your doctor hasn't given you the equivalent dose to the usual pred dose. They have given you about 2/3 of what you are likely to need and if you aren't on enough they simply don't work, you must take enough. It's a bit like doing the dishwashing - if the dishes are dirty and you just put in a little drop of dishwasher liquid you won't get enough suds to clean the dishes - you need two or three squishes!

I fear you may have to learn to live with the fatigue - it may also not be the pred but the underlying disease you need it for. A common factor in autoimmune disorders is fatigue and the steroids, whatever sort it is, don't do anything about that, they just manage the symptoms while the underlying illness grumbles along in the background.

If you read the links in this post

healthunlocked.com/pmrgcauk......

it may help you understand a bit better.

[Hidden]

Hi Lulu, i agree with pmrpro. I also wondered if the pred did manage pain and the fatigue became more evident when pain reduced a bit as it is the PMR that caused fatigue. Now you aren't managing the PMR pain, it seems fatigue is not as bigger issue.

More information is important. Knowing how long you had taken the pred, at what dose and if it worked pain wise it helps us tailor advice and information more specifically.

Your expectations of PMR may need to be readjusted. It is a serious chronic illness. Untreated it can lead to GCA more frequently than if treated with pred. We tell evetyone that if you have any problems with your vision you must seek immediate treatment as you can lose sight permanantly. I am not saying that to scare you. Just to inform. It was a vital bit of information that my GP never gave me. 🌻

[HeronNS]

I found some research which has PMR patients starting at 21.5 mg deflazacort. They had a good response.

ncbi.nlm.nih.gov/pmc/articl...

[PMRpro Ambassador in reply to HeronNS]

Low but not far off usual is it? So how come a doctor couldn't find it?

[HeronNS in reply to PMRpro]

They didn't look?

[PMRpro Ambassador in reply to HeronNS]

Probably. But if you don't know, don't you look something up to be sure? It's the known unknowns and unknown unknowns isn't it?

[HeronNS in reply to PMRpro]

They probably didn't know they didn't know - the most dangerous type of ignorance!

[Blearyeyed in reply to PMRpro]

Your talking the language for common sense there PMRPro and we all know that's often a language that the Medical Community hasn't learnt .