Not typical PMR ?? Long covid related and back problem.

[simps999]

I posted a few months ago about my symptoms and you were very helpful with advice suggesting it might be long covid related as the symptoms appeared a week after getting covid. ESR levels were 57 and CPR 7

After being put on steroids they came down to normal levels quite quickly but the pains didn't really go away although they were reduced. I saw a rheumatologist who suggested being on pred. for 6 weeks and then reducing but also said it could be long covid phenomenon.

My GP has wanted me to reduce quicker as she wasn't convinced it was PMR. I did go up to 25mg initially, then 20 then 15

My main issue has been weakness in my legs and low buttock pain that has remained the whole 5 months. Shoulder pains have been variable in both shoulders and did greatly improve but are now bad again. Everytime I have reduced the pred I have had more pains.

Also blood test has recently showed an increase in ESR, now 27 and CPR 4

I have seen an orthopaedic back specialist today as have also had some numbness in right foot which came on 3 weeks ago along with more back aches

The MRI I had revealed some stenosis and disc degeneration which could be the reason so it was suggested I had a steroid injection first which could also be a diagnostic tool and /nerve test. I did have a back op 30 years ago.

I was thinking the dull burning sensation I have in my buttocks could be nerves but he says it could also be PMR related ??

I am so frustrated at just not knowing and the" it could be....." Before covid in June I was a fit and active 66 year old.

I am thinking that maybe I came down off the steroids too quickly although GP thinks I was steroid resistant.

Any thoughts gratefully received and sorry for the long post.

Also I couldn't find my previous posts ??

[DorsetLady PMRGCAuk volunteer]

Re previous posts -just go to your profile-

healthunlocked.com/user/sim...

“Everytime I have reduced the pred I have had more pains.”…

That may indicate it is PMR despite what your GP may think….and if it is then the Rheumy is the expert, not the GP.

I think you need to return to steroids, maybe a smallish dose initially to see if that helps.

Shoulders…typically PMR.

Buttocks maybe be piriformis pain, myofascial pain or sciatica-all which seems to like being friends with PMR…

Do you have another more sensible GP in the practice you can see?

[simps999 in reply to DorsetLady]

Thank you for your thoughts. I am currently on 10mg as my GP suggested going up from 8mg two weeks ago after raised ESR levels.

Wondering I should be on higher though

[DorsetLady PMRGCAuk volunteer in reply to simps999]

This link contains advice for dealing with a flare - but as it’s not 100% certain that’s all it is, I’m wary about telling you to increase too much…but have a look anyway…

healthunlocked.com/pmrgcauk...

[simps999 in reply to DorsetLady]

Thank you. Appreciate any advice and undersatnd that I need to work alongside either GP or rheumatologist.

[PMRpro Ambassador]

When someone says buttock pain and leg problems my immediate thought is piriformis syndrome - which can catch the sciatic nerve which could cause the symptoms. Sciatica isn't always spinal disc related.

"Everytime I have reduced the pred I have had more pains"

Well you would if it is PMR - even if it is Long Covid PMR (PMR may well be triggered by a viral infection). I suspect you needed more pred at the start - and then you need to stay at the starting dose not only until the blood markers are normalised but also the symptoms are as low as possible and stable. THEN you probably need to taper in smaller steps than you have been - some people can reduce in 5mg steps, others struggle with 2,5mg and some even need to go down to 1mg at a time. It should NEVER be more than 10% of the current dose. And a slowed taper as described in the FAQs might help too.

If it is Long Covid it may have some special characteristics and be more resistant. Whatever - if the inflammation markers are on the way back up - the pred is definitely too low.

And yes - a broader minded GP would be a good start - your rheumy sounds rather more sensible. But if he is saying 6 weeks at a dose - I'd say you probably didn't stay anywhere long enough. Two months at the starting dose - which may be well above 15, 15 is the low end of the range. The 2016 Recommendations says "lowest effective dose in the range 12.5 to 25mg", exceptionally it may be 30mg. Covid-related PMR will have its own rules!

[simps999 in reply to PMRpro]

Thats interesting and although I hate the thougjt of going back higher to have reduced pain is the most important thing. Looks like I need another trip to the rheumatologist. Do you think the weakness in the legs is characteristic of these conditions though? The back consultant today said usually when you sit down the pain is relieved if it's to do with nerves being compressed . My pain is there all the time.

[PMRpro Ambassador in reply to simps999]

Not if it is spasmed muscles causing the problem - orthopods often are good at bones and discs but less aware of the role muscles can play. I can have back pain that is almost bearable in one single position sitting with the right back support and a lot of cushions! But one movement elicits a scream! And the ache tends not to go away. Once the muscles have been relaxed and mobilised it all improves but it takes a lot of work by someone who knows what they are doing to get it to go away altogether.

[simps999 in reply to PMRpro]

That sounds painful ! I do know a very good osteopath who has worked on that area before. She was reluctant to work on me recently if the cause was inflammatory.

[PMRpro Ambassador in reply to simps999]

But a lot of the muscle problem is inflammatory - doesn't stop my physio attacking it! She had a really good go at my back this morning - certainly felt the effects elsewhere this afternoon but my back is better!

[simps999 in reply to PMRpro]

Good for you ! I will definitely have a chat with her and maybe have some treatment again .

[PMRpro Ambassador in reply to simps999]

The osteopath I saw in the NE of England didn't bother either. She and my Bowen lady kept me upright in the 5 years of PMR without pred!

[simps999 in reply to PMRpro]

Good to know

[Myfoe]

Your story and mine are very similar only differences is my PMR started after my last vaccination and not actually Covid pre diagnosis my symptoms were so bad I couldn’t care for myself I started with 40mg prednisone bummed up to 50mg before my symptoms simmered down I still have pain in my butt/hips leg some days and the “sit bones” in my butt hurt like crazy feels like I have two golf balls in my back pockets while sitting my shoulder pain causes headaches from all the tension myself and 5 other 60mph males the rheumatologist is seeing all have the same symptoms and are not responding well to just prednisone I have recently started methotrexate injections as have the others I caught Covid about 3 weeks ago and had to stop methotrexate some of the symptoms/pain came flooding back so any doubt I had it was helping went away in closing PMR pain can IMO affect any muscle/tendon to say you don’t have PMR because it doesn’t affect butt or leg muscles is bunk I know to many who have such pain! I believe you are correct you need a bump in prednisone the results should tell the story rather quickly could it be masking some other long Covid symptoms probably but being out of pain is the end game yes?

[Wallysma]

Hi. I was diagnosed in May and started on 20 mg pred...on top of the 3 mg I had been on for RA since 2015. It worked but I was told to reduce too fast and I found myself on a roller coaster of pain and pred dosing all over the place for a couple of months...it was awful. For me in the beginning my hands were the worst. The pain was so bad I could barely use them. Then as the pred did it's thing the more typical pain locations revealed themselves. Arms and shoulders, what I call weak neck. But the hip-back-butt-thigh pain is my most difficult spot to control. I know my spine us ok...it is muscular/soft tissue. Pred does take care of it but finding the right dose was not easy. I ended up back at 22.25 after going down to 10 at one point. I am trying to go down in the dose again and am currently at 17.25. The pain in that area has settled for sure. Made it through 2 reductions. But this step is not as easy as the other two steps down. One thing I learned here is I experience withdrawal symptoms for a couple of days each time I reduce. So I wait to see what is going to happen. So I think you might want to consider dose when you have the lower body pain....not sure this makes sense or helps but it took me awhile to learn this and I did it the hard way. You might need to go up to test it.

Good luck.....be well.

[DorsetLady PMRGCAuk volunteer in reply to Wallysma]

If you are experiencing steroid withdrawal you could try a slower tapering plan - they are not just for lower doses - couple here -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Wallysma in reply to DorsetLady]

See below...woopsie

[simps999 in reply to DorsetLady]

Thank youI have sent my email to you.

[simps999 in reply to Wallysma]

It's encouraging to know that others have experienced similar problems , but not nice for you to have to stay on a high dose . I have gone back to 10 mg from 8 mg last week and for a few days the shoulder pain seemed better but now it's just the same and worse in the morning again and wears off as the day goes on. The pain in my butt is always there and the weakness in my legs most days. Sometimes it comes on later in the day. In your opinion how much higher should I try and for how long ? Before tapering again ?

[PMRpro Ambassador in reply to simps999]

Try adding 5mg to the dose for a week and then drop back. Are you modifying your activity? Doing too much of the wrong things will cause pain. And some causes of shoulder pain and the buttock pain will respond much better to targeted management - if is is bursitis and piriformis syndrome respectively causing the pain.

[simps999 in reply to PMRpro]

I don't think I am doing too much as much as I would love to do more. So go to 15mg just for a week to try and see if there is a difference? Then drop back to 10 mg ?

[PMRpro Ambassador in reply to simps999]

If it is the wrong thing even a small amount may be too much. Usually we say add 5mg to where the flare occurred - were you OK at 10mg before and the problems surfaced at 8mg?

[simps999 in reply to PMRpro]

I wasn't too bad on 10 mg but still had the pains. I think I was better on 15mg but as I still had the pains GP thought It might be long covid not PMR. She then suggested I reduce 12.5 then 11 and then 10 then 9 the 8 This is all since September .

Ironically have just had a call from the long covid clinic for an appointment this week.as have been waiting for a couple of months. It's a 40min. Telephone appointment. Suppose there is nothing to lose.

[PMRpro Ambassador in reply to simps999]

There isn't - might help raise the profile of PMR too! Did you start at 15mg? That is the bottom end of the range for starting dose and many people need more, 20mg is usual but the Recommendations say up to 25mg and exceptionally 30mg. But you do have to get all the inflammation cleared out and both bloods and symptoms stable before tapering the dose or you just make it even harder for yourself.

[simps999 in reply to PMRpro]

Initially I was put on 15mg for 9 days then went to 20mg for 5 days then 25 mg for 8 days . I definitely had a reduction in pain but I still had pains in my buttocks and shoulders. (my blood test showed a great reduction in inflammation . ) My GP and others thought I had had the wrong diagnosis especially as it came on immediately after covid and I was told that I should have seen a much better response to the steroids so I then started reducing them. Do you think I didn't stay on the higher dose for long enough . I was also of the opinion I should have been mostly out of pain and as the high level of steroids gave me unpleasant side effects I guess I was also keen to come down off them .

Now at 10 and as mentioned in previous posts still struggling .

[DorsetLady PMRGCAuk volunteer in reply to simps999]

Many tapers suggest 3weeks for initial dose -which is about what you were on over the 3 different ones -but longer is better -some stay 4 weeks, but personal opinion is 5-6 weeks… but I’m not a doctor!

In retrospect sometimes it’s better to put up with the unpleasant effects of Pred at slightly higher doses to get the built up inflammation fully controlled - makes subsequent journey easier….

[simps999 in reply to DorsetLady]

Thank you.Am sure you are right and in retrospect would have put up with the unpleasant side effects if I'd known this.

[DorsetLady PMRGCAuk volunteer in reply to simps999]

The trouble is, you don’t know - and hindsight is a marvellous thing! 😳

[PMRpro Ambassador in reply to DorsetLady]

20/20 vision usually!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

That’s me b&@@ered then 🤦🏻‍♀️

[PMRpro Ambassador in reply to simps999]

A bit longer would have been good I think - and a bit of targeted management of the buttock and shoulder pain which are probably piriformis syndrome in the bum and maybe bursitis as well as muscle problems in the shoulder, an element of myofasical pain syndrome definitely. Has the pain and discomfort increased during the tapering?

[simps999 in reply to PMRpro]

I would say the pain in the buttock region has increased with tapering but no worse than at the start and also the pain in my shoulders is not good . As the day goes on it does improve and I know thats typical of PMR. The numbness in my right foot is a new thing though and came on two weeks ago. The weakness in my legs varies some days not too bad others not good at all.

Think I am a real mystery !

[Wallysma in reply to simps999]

Follow PMRpro and Dorsetlady's advice....I am a newbie still though I have learned a lot. I keep thinking "what the hell would I have done without this place"....I was in such a bad place....the pressure to reduce is insane. There is no consideration for symptoms! It did take me a long time to really understand how it works. Anyway...I went up several times until I saw improvement....then stayed at a level until things improved. Good luck with it.....it's a bit of a cha-cha.

[simps999 in reply to Wallysma]

Agree , the pressure to reduce is there , although must admit have also wanted to come off them too. Feeling differently now, just want to be out of pain .

Good luck

[Wallysma in reply to simps999]

I hate pred...how it makes me feel EXCEPT for the pain reduction obviously. But they act like I am buying it on the street and mainlining it.....I want to be on it because it's the only thing we have really. And I am with you I don't want to be in pain. When I was on the roller coaster trying to figure all this out I went to a very dark place. That has changed since things got straightened out more. But it is hard to have your body say one thing...need more pred and the person with the med pad say no. Anyway...you take care of yourself. Here's to PMR responding......

[simps999 in reply to Wallysma]

Thank you. Good to hear you are in a better place now. I think pred does mess with your emotions but so does chronic pain .Putting on a brave face each day is hard.

[Wallysma]

Or not.....lol.

[Wallysma]

Well maybe.....I lost my reply somewhere. Basically what I said was in response to DorsetLady......I am in a struggle with my doc on this. I actually got her to slow down some and will need to see if I need to do more. Ugh. It is exhausting to add this stress to the real issues of trying to live with this disease. Anyway....I am just glad I learned about possible withdrawal symptoms when I reduce. Both you and PMRpro taught me this. It takes a few days for it to resolve and allow me to see what is happening with the PMR symptoms. This particular reduction is a tad more difficult than the last two. But I appreciate the info you sent and telling me I can slow at the higher doses as well. I will see how it goes.

Thanks....be well. Mickie