Should I increase Pred dose ?

[jules1955]

Hi Everyone, not posted for a while. I am into my 6th year of PMR ( can't believe its that long ) I am currently on 5mg of Pred and have been for a couple of months. I am however in pain. My upper arms, bottom and down my legs. ( I have arthritis in my lower spine too ) Walking is no longer enjoyable. I keep hoping it will get better, but it hasn't. Getting up from the sofa/chair is comical at times. The Doctor thinks I should be still reducing and has requested blood tests next week, but tests don't always show up what I am feeling. I also still have a few days every so often when I feel exhausted. Every day now is a bit of a struggle and I am thinking of upping the dose for a few days to see if I feel better, or should I wait now until I have the blood tests ?

[Maisie1958]

Hi Jules, I certainly sympathise it’s miserable being in pain and as for the tiredness it’s exhausting being so sore but then adrenal function might be lagging at your dose. I guess paracetamol doesn’t help at all with the pain? I don’t suppose you could get an appointment for the bloods just a few days earlier? not easy in these times. I’d be tempted like you to increase the prednisolone but it seems a shame if you get “better” results next week for having done so, especially if your doctors are going by inflammatory markers rather than how you are feeling. I’m nearly 6 years since diagnosis and had a run in recently with a GP who basically didn’t believe PMR could last so long and stopped my low dose prednisolone- luckily my ESR/platelet count went up after a few weeks (of misery) allowing another GP to override that decision. I’d be inclined to try to stick it out rather than increasing the prednisolone before your blood test but that’s only me. I’d try to get that blood appointment brought forward. It does sound you need a higher dose to function or at least some help with pain relief. Sorry, no decent advice but I hope you get sorted soon. By the way I love the photograph. All good wishes.

[jules1955 in reply to Maisie1958]

Thank you for your reply, I’ll wait for blood tests. ❤️

[singingloud]

At what dosage of prednisone were you free of pain? Maybe you’ve gone past your needed dose to maintain the pain? I’m sure you will get some fine advice soon.

[jules1955 in reply to singingloud]

Thank you for reply, between 7/10 mg was good, I will wait for test. ❤️

[PMRpro Ambassador]

Your doctor is obviously totally unaware of the fact that symptoms always trump lab results which may lag a long way behind, as much as months. However - I would try to wait for the results so you can say that either he allows you to raise the dose to see if it is the PMR or he needs to investigate why you are in so much pain.

And just in case he is also under the impression that PMR doesn't last that long:

practicalpainmanagement.com...

medpagetoday.org/rheumatolo...

are two articles about the same study, link to the original at the bottom of the articles.

[jules1955 in reply to PMRpro]

Thank you, I’ll wait till test and keep you posted ❤️

[singingloud in reply to PMRpro]

I tried to open the articles but with no success.

[PMRpro Ambassador in reply to singingloud]

I don't think anyone has complained they can't open them before - and I have just tried them and they worked. Are you using the HU app?

You might find them by googling:

Polymyalgia Rheumatica and Steroid Side Effects: New Findings Eric Matteson and Don Goldenburgh in practicalpainmanagement

No Special Risks Seen with Long-Term Steroids in Polymyalgia Rheumatica

-One exception: cataracts

by Wayne Kuznar in Medpagetoday

[singingloud in reply to PMRpro]

Thanks I’ll give that a try. Maybe my iPhone can’t bring it up.

[judyb100]

I'm sorry you're having so much pain that is having such an effect on your life. I can relate to what you're saying, as I've had PMR for 5 years and am trying to deal with daily exhaustion.

I wish I had some good advice. If the doctor is convinced that the blood test results show whether you have PMR, he/she is wrong! Nevertheless, the doctor should try to investigate to find out what else may be causing your problems.

In my case, my blood "inflammatory markers" were only high the first time I went to the doctor 5 years ago. At that time, my hips were so stiff I could barely bend. Since I started on prednisone, I have always had normal blood tests despite continued stiffness, flares, etc. Only in the past year have I finally been able to reduce from 8/9/10 mg of prednisone down to my current 4/3.5. Throughout all this, my blood tests remained normal.

Is it possible to see a different doctor?

[jules1955 in reply to judyb100]

Thank you for reply, I’ll keep you posted ❤️

[herdysheep]

I can not add anything helpful to the above, except try and hang on until the results and keep looking at your fabulous photo. It lifted my spirits. Good luck.

[Pollyanna16]

I am do sorry you are in so much pain & thankfully there are some helpful replies below. Is that a photo of what we call “The Coming Home Trees” as we enter Cornwall? X

[jules1955 in reply to Pollyanna16]

hi there, thank you for your reply and yes " The coming home trees " I am privileged to live in Cornwall x

[YuliK]

Jules, long time no see. 👍

Sorry to read that you are struggling with that 5mg prednisone.

As others have suggested, it really could be your adrenal glands not functioning yet.

I have managed to arrive to 3mg, after over 30months of prednisone.

I am still having pains when I relax on my armchair for over 3 hours ..the mornings for the first half to one hour are particularly painful, but as soon as I shuffle around it passes.

Symptoms of prednisone withdrawal can include:

body aches

mood swings

weakness

extreme fatigue

dizziness or lightheadedness

joint pain

loss of appetite

nausea

The the rest of the day is fine. Just I have this crippling fatigue and there are days I could sleep 18 hours. ( on and off)

Early next month I’m going to do the synacthen test and will see if the adrenals have kicked in again.

I’m 78 years of age, so I don’t expect to feel like a spring chicken.

Conclusions:

“1) Adrenal insufficiency after discontinuation of glucocorticoid occurs frequently; 2) there is no administration form, dosing, treatment duration, or underlying disease for which adrenal insufficiency can be excluded with certainty, although higher dose and longer use give the highest risk; 3) the threshold to test corticosteroid users for adrenal insufficiency should be low in clinical practice, especially for those patients with nonspecific symptoms after cessation.”

Source:

academic.oup.com/jcem/artic...

There is pain involved when the adrenal glands are not functioning. It can take up to 6 months for them to kick again.

[jules1955 in reply to YuliK]

Thank you for your reply, I might ask about a test to see if my adrenal glands are working. It’s difficult to know what to do for the best, wait it out and see if the pain goes away or up the Pred to see if the pain goes away.

[YuliK in reply to jules1955]

Jules I don’t have pains all the time. Just on waking or sitting for 3 hours or longer.

I take a paracetamol when I feel the pain coming on.

Yes, try and get your rheumatologist to arrange the synacthen test. At least then, you will be a little more wiser as to what’s what.

I hope you will Feel better soon. 🙏

YuliK. 😷