Massive flare after 2 years

[Downtime]

I was diagnosed in 2022 and started on 12.5 mg pred which the rheumatologist said was the lowest starting point. I had immediate relief. I quickly reduced to 10mg and everything was still fine. After 6 to 9 months I started to gradually reduce and currently I’m on 4mg.

There is other stuff going on as I have inflammatory arthritis and take methotrexate which I’m also trying to reduce as it has caused so many skin cancers.

I began to feel unwell recently with headaches, nausea and fever like symptoms and now I have a lot of pain in my neck shoulders, upper arms, thighs, hips and feet. It’s exactly how I started with PMR in 2015. The pain is quite different from the joint pain I can have with the arthritis.

Has this happened to anyone else? I can’t believe it and I really can’t stand the thought of starting the high dose of pred all over again. Could this be a temporary thing which might be solved by a short course of a higher dose ? I do hope so.🤞

[DorsetLady PMRGCAuk volunteer]

It happens to many.

You don’t have to start again, but you do need to get your PMR back under control. Try the flare protocol as described in this link - and drop back to 5mg not 4mg as that’s too low. When back on track, a much slower taper in future - 0.5mg a time [plain uncoated tablets can be cut] and best to use one of the tapering plans we suggest.

It’s not a race to zero - it’s finding the lowest dose that controls symptoms…

healthunlocked.com/pmrgcauk...

Tapering plans -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Downtime in reply to DorsetLady]

Thank you . I’ll take your wise advice

[SnazzyD]

How recently? Not Covid is it? It can give one very achey muscles and joints on top of everything fever, nausea, headache etc. No harm in treating it as a flare though as per DL.

[Downtime in reply to SnazzyD]

I did wonder and took a test which was negative. A pity really as that would have been simpler to deal with !

[PMRpro Ambassador in reply to Downtime]

Current versions of Covid seem to need repeated testing - loads of people have experienced needing 4 or more tests to get a positive!!!

[Downtime in reply to PMRpro]

Really, well I’ll keep testing then , thanks

[SnazzyD in reply to Downtime]

Some don’t test positive at all. Time will tell because the acute phase will die down in 5-10 days from my own experience.

[Bcol in reply to SnazzyD]

It was nasty one this time, I was negative after six days, but pretty much back to normal after ten days.

[PMRpro Ambassador]

You are actually NEVER simply reducing relentlessly to zero - you are titrating your dose to find the lowest effective dose for YOU. That is the lowest dose that gives the same symptom relief as the starting dose did. The pred cured nothing it is an ongoing management strategy and you have found it - 4mg is too low, you need to be at 5mg at least. It doesn't mean you won't get lower, just not yet.

[Downtime in reply to PMRpro]

Thank you I’m, sure you’re right . I’ll increase the dose right away and see what happens then later reduce very slowly 🤞

[PMRpro Ambassador in reply to Downtime]

But no need to go back to the beginning - it is a mistake many doctors make and the patient suffers from their ignorance of the real way to deal with PMR

[AtopicGuy in reply to Downtime]

If it does turn out to be covid, flu, or another short-term infection, immediately choosing to increase the dose may not be the best thing to do. Whether you can bear to ride out the symptoms for a week or so to see depends on their severity.

[Downtime in reply to AtopicGuy]

I’m sure it’s not covid. I’ve had it twice before and along with any body aches etc there’s been sore throat and some sort of respiratory symptom.

[AtopicGuy in reply to Downtime]

You may be right, but different viral strains present in different ways. And our immune systems may react differently each time a familiar infection takes hold. That's why new influenzas can be dangerous, while old ones are little more than common colds, or produce no symptoms at all.

[PMRpro Ambassador in reply to AtopicGuy]

By which time it could become a well-established flare.

[AtopicGuy in reply to PMRpro]

That's the dilemma: should the answer to worsening symptoms always be ever higher doses of steroids, even when they might be due to a routine infection, which will clear in a few days.

[PMRpro Ambassador in reply to AtopicGuy]

We don't say that. Ever. The context is really important. And why we have the flare protocol - to see if a short burst of more pred helps. When it doesn't, the conclusion is that it is unlikely to be PMR and medical advice is required.

[Grammy80]

I'm a GCAer with no PMR experience. I am just popping on to say that I have no desire for 'zero'....it seems the applecart can flip over easily. I hope you find your comfort zone and have the best quality of life possible~! 💞

[Downtime]

Thank you, You’re right, things can suddenly change . Onwards and upwards!

[Doraflora]

sorry you’ve had this flare, Downtime. But as others have said, a slow taper is absolute key.

I’ve had PMR for 4.5 years and currently on 2.5 mg. I’m always aware of a flare popping up & biting on the bum, but onwards and upwards!

PS: I’ve always done a taper by 0.5 at a time and staying on the new dose for at least 6 weeks or more.

Hope you soon pick up when you increase your dosage

[GwenTheHen16]

Hi Downtime, I too was diagnosed in 2022. I gave just had another flare and can’t seem to get below 5mg so just followed Dorsetlady’s flare procedure for a week and seeing how I get on today at a a slightly lower dose. Does work. I have been taking a little of my dose in the evening and the rest in the morning and has enabled me to get lower than I could before!

Hope this is helpful 😊

[Downtime in reply to GwenTheHen16]

Thanks a lot . You know as you’re in the same position. I’ll follow DL ‘s flare procedure and then stay on probably 5mg until I see the rheumatologist in November . 🤞

[k-mac]

hi there I think I’m experiencing something similar. I was diagnosed in 2014 and for some months have been trying to reduce from 4 to 3.5 in addition to shoulder /arm muscle pain I’ve developed pain in both legs from hip downward and walking is becoming painful . I too have inflammatory arthritis in hands and feet and my GP maintains that the new leg pain is arthritis not PMR.and has arranged an X-ray. I’m not convinced . She takes the view that any pain will be arthritis masked by Pred . To me it has the hallmarks of a flare …I’ve always felt PMR makes itself felt’ squirrelling around’ within areas of muscle when I lie still. Be interesting to hear if increasing Pred. helps …(but then my GP and rheumatologist would maintain it was masking arthritis pain and not a legitimate use of Pred !) hope you’re feeling improvements very soon 🌈🙏

[DorsetLady PMRGCAuk volunteer in reply to k-mac]

Nothing to say you can't have both - OA and a flare of PMR!

[Biscuitdarling in reply to DorsetLady]

My rheumatologist said it must be masking arthritis, but I don’t have joint pain!

He told me to get off pred and go home & rub some gel on it ! I came off pred for a week and felt really ill exhausted and shakey had to beg GP to let me go back and he has allowed me to go on 3mg and start reducing again after 6 weeks 😢

[PMRpro Ambassador in reply to Biscuitdarling]

Even my rheumy - a world expert in PMR - insists on pressing all my joints! It is standard rheumy examination technique, but meaningless for PMR. Unless of course you are developing an inflammatory arthritis ...

[Downtime in reply to PMRpro]

It’s a problem when you have OA and PMR not to mention my 9 year diagnosis of RA or inflammatory arthritis as they seem to want to call it now. Basically I just want a drug regime that will bring me some pain relief and enable me to have a reasonable quality of life. Not much to ask 🤦‍♀️

[PMRpro Ambassador in reply to Downtime]

It isn't is it - particularly since they can't cure and everyone is different, I have mine nicely now, but if I return to the UK it is likely to be refused and I will be back to square one.

[DorsetLady PMRGCAuk volunteer in reply to Biscuitdarling]

Hope it helps…

[k-mac]

Will an X-ray rule out OA in hip joints if they look intact do you think ? I just want to work out best pain control methods and feel this desire to rule out PMR muddies the waters . I was prepared to go along with them a few weeks back and carry on reducing but as I’ve been heading for 3.5 for months but feeling rotten thought I’d like a synacthen test arranged after 10 years Pred to rule out iffy adrenals but they won’t do one . Feeling hopeless about it tbh 🙈

[PMRpro Ambassador in reply to k-mac]

Not necessarily. I know one orthopaedic surgeon said he had seen patients with good looking cartilage who could barely stand never mind walk and others where it looked like bone on bone and they were still playing golf!

[Biscuitdarling in reply to k-mac]

I know how you are feeling I’m totally exhausted & get weepy ! It’s as though they don’t believe you !

[k-mac in reply to Biscuitdarling]

That’s me today … keep trying to look things up to see if there’s anything which might help and can’t take in what I’m reading . Off to walk the dog ! Hope things brighten up for you 🦋🌸🌻xk

[k-mac]

crikey it’s complicated! Thank you 🤷‍♀️😄

[PMRCanada]

Others have provided great insight and suggestions how to proceed when flaring.

I am interested in the comment in your post related to MTX causing skin cancer. I’m also on both pred and MTX, but am not familiar with, or heard of, a cancer risk taking MTX.

Can you please elaborate?

[PMRpro Ambassador in reply to PMRCanada]

dermatologytimes.com/view/m...

However, as is mentioned in the article, an increase in a very small risk is still a very small risk. One type was only seen more in patients taking MTX for psoriasis - which begs the question whether it is actually something in the actual disease influencing it.

[Downtime in reply to PMRCanada]

My dermatologist said for people with fair skin who have had some sun damage Mxt isn’t great. If. you research it you’ll see that it does increase the risk. For most people it’s fine but I’ve had so many surgeries for various skin cancers including a melanoma I’m desperate to reduce the dose if I can . But maybe I can’t. We’ll see 🤞

[Darcy2000]

This sounds so much like me. I am 5 years in this PMR. Journey and right now in a big flare . Started about 2 months ago when I began tapering from 15 mg slowly and presently at 10 mg and feel generally very very sore from knees to back of my head.Prednisone has always helped me ( I know the devil drug) but now not so much .He also started me on Methotrexate 3 months ago but I am not sure what that has done other than cramping my social life with no alcohol or very little. I agree going up the Prednisone ladder is not appealing to me especially as I may be prednisone resistant …if there is such a thing. I see my rheumy today will ask about other options .. Kevzara …Humira … low dose naxalone

Will post his thoughts

[Downtime]

I read somewhere that when you’ve been taking pred for sometime you need higher doses to get the same relief, which explains a lot. I suppose you become a bit resistant to it over time.

[AtopicGuy in reply to Downtime]

Artificial steroids mimic the effect of natural cortisol in our bodies. Fortunately, we don't need ever-escalating levels of hormones to keep ourselves functioning.

[PMRpro Ambassador in reply to Downtime]

It is very unusual to become habituated to pred in that way and require increasing doses for relief, It is more likely to be increased disease activity.