Interested in dosages, staged cutting down, longevity of condition, recovery stories, things to watch for.

[Predderman2020]

I thought I had Long Covid until I had multiple antibody tests. Very similar symptoms. Very rapid onset, but no discernible reason. I had a sore chest and for a CT scan I was given 3 days of Pred 20mgs. Made a massive difference. Now here I am via general autoimmune investigations - nb I have low white blood cells but no other markers. The Pred makes life, say, 65% better. Very welcome! Hoping for further improvement.

[Theziggy]

Do you have PMR?

[Predderman2020 in reply to Theziggy]

I believe Yes - all points to that.

[Predderman2020 in reply to Predderman2020]

Thanks everyone.

Answering the Ziggy ...

Or another v similar autoimmune disease!

Back on the 20mgs after a Dr enforced break (so they could do bloods) for the last week.

All: Symptoms - I didn't mention weakness down one side - better after light exercise and after lunch. Worst is terrible nausea. The nausea is relieved by Pred and weakness gone by lunch. Am following the idea of taking the pill in the early hours (with Greek Yog), and will explore slow release. Very mild effect on sleep - easily overcome.

Still have generalised pain but bearable.

[PMRpro Ambassador in reply to Predderman2020]

There is no "slow release pred" - only plain ordinary pred, enteric coated/gastro resistant prednisolone (only available in the UK and I suppose you could say it releases more slowly) and delayed release prednisone (not available on the NHS in the UK and quite expensive otherwise)

[Predderman2020 in reply to PMRpro]

thank you. Tim

[DorsetLady PMRGCAuk volunteer]

Hi,

If you have PMR or GCA this might help. -

pmrgca.co.uk/content/about-...

...and this -

healthunlocked.com/pmrgcauk...

But a bit more info from yiu might help us to answer your questions

[MrsNails]

Welcome, are they considering PMR as a differential diagnosis to Long Covid?

Kind Regards

MrsN

[Predderman2020]

thank you - not sure what that is. I have to accept I didn't have LC because of multiple tests. However, the ONLY indicator is the big improvement on all fronts (nausea, hopelessness, energy, pain, headaches etc) from Medrol 16mgs. T

[MrsNails in reply to Predderman2020]

Sorry, a differential diagnosis is a list of possible conditions or diseases that could be causing your symptoms. It's based off of the facts obtained from your symptoms, medical history, basic laboratory results, and a physical examination.

That’s how it’s described when they are not sure what you have & they consider different possibilities.

Hope you improve soon

MrsN

[Predderman2020 in reply to MrsNails]

Thanks - I am early stage in the medical investigations and I guess that is mid-differential. I am allergic to Drs dropping you out of disinterest and that is why I am running my own investigations and medication (like a lot of persons on this board) .

Added to that the feelings are so bad without that I need the Pred to make life and relationships viable.

[PMRpro Ambassador]

The usual expectation in PMR (polylyalgia rheumatica) is at least a 70% global improvement within a short time in response to a moderate dose of pred (15-20mg). I assume they can't find indications of other forms of autoimmune rheumatological disorders but steroids will help with the symptoms of a lot of them, including PMR/GCA where steroids are the mainstay of management, other disorders do respond to other drugs.

Many of us with autoimmune disorders have been snorting a bit at the fuss about Long Covid - that a severe viral infection can lead to an autoimmune disorder which causes extreme fatigue really doesn't seem surprising to any of us! We're just hoping it results in a better understanding of our problems and symptoms.

[Predderman2020 in reply to PMRpro]

Maybe it is another autoimmune disease. Could you suggest a few, please.

Re: Hoo-Ha about long Covid - I think it can only help if there is unearthed some symptomatic relief from 'parallel' symptoms?

[PMRpro Ambassador in reply to Predderman2020]

Various forms of inflammatory arthritis, lupus - a whole range really. But also some non-rheumatological conditions. It is difficult to say in advance - the doctors need to do the right sort of blood tests first and work from there.

emedicine.medscape.com/arti...

[Predderman2020]

I have been 'guiding' my Rheumatologist Dr (in Malta) to administer Pred because it changes my life. But I expect to follow the regime (below) to resolution in a couple of years. Thanks for your suggestions Nails and Dorset! Most valuable.

rcpe.ac.uk/sites/default/fi...

[PMRpro Ambassador in reply to Predderman2020]

Even the Quick and Kirwan approach acknowledges that the taper may require adjustment - and doesn't always result in a 2 year conclusion!

[Predderman2020 in reply to PMRpro]

Understood - however, it seems sensible to attempt it, especially since we are not supposed to be on Steroids very long term. Here's hoping.

[Predderman2020]

Ni sign of Giant Cell by the way