is it a flaire

[Sandidee]

hello everyone.

I am currently on 1mg of pred although I have had pain in my neck for a while but it is not to bad but I have started to get pain at the top of my left leg at the back, when I fist started with polymyalgia I had pain in my neck and the back of both legs I could hardly walk this is only at the back of one leg. Could it be a flare ? I’m not sure what to do I no longer see my GP he referred me to the hospital during lockdown and the hospital doctor is only really interested in my osteoporosis so I see her yearly. I feel that I have no support. Thank you

[DorsetLady PMRGCAuk volunteer]

hi ,

This link contains usual advice for dealing with a flare-

healthunlocked.com/pmrgcauk...

Worth a try in the lack of any medical advice… and if it doesn’t work then it’s probably not your PMR - so you will need to think outside the box, and so will your GP.

[Sandidee in reply to DorsetLady]

Thank you so much that was a very interesting read. I am going to go up to 5 and then down to two mg and see how I am.

[DorsetLady PMRGCAuk volunteer in reply to Sandidee]

Okay… let us know how it goes please… good luck

[Sandidee in reply to DorsetLady]

Will do, thank you

[Munny22 in reply to DorsetLady]

Thank you Dorset lady that is a really useful read. I have been steadily reducing my dose by 1 mg every two months, because every month was too quick for me. I recently reduced to my lowest dose of 2 mg but started getting symptoms of a flare. This has happened to me before, while I have been reducing, but the symptoms passed after a week or so, and I was able to continue reducing. I’d also gone and checked my blood for any inflammation, and it was in normal range. Now I’ve got down to 2 mg, I noticed after a few days that I was getting the pains in my mid back and finding it difficult to breathe in deeply, which was one of my pre-diagnosis symptoms, I also felt a mild headache, that just lingered on and off. I took Co-Codamol and it dulled the pain and enabled me to sleep, but didn’t remove it. I have since increased my dose to 5 mg over the past four days and the pain is subsiding.

I plan to wait for a callback from the rheumatology nurse for further advice next week.

[PMRpro Ambassador in reply to Munny22]

Remember - and remind her - that youa re not heading straight for zero but titrating the dose to find the lowest effective dose. When your body rebels at a similar dose more than once it is telling you that you have arrived. For now at least - you will get lower, just not yet.

[Munny22 in reply to PMRpro]

Thank you, that’s helpful

[DorsetLady PMRGCAuk volunteer in reply to Munny22]

You may have had "normal" inflammatory markers, but they often lag behind symptoms - which are the key - sometimes the medics place too much credence on markers.

As PMRpro has advised.. if you're struggling at similar dose - that is telling you that it's your limit for the time being - won't always be , but is now.. and at such low doses, even 0.5mg really does make a big difference.

[Munny22 in reply to DorsetLady]

Thank you. I’ve never tried reducing by 1/2 mg, but Will try that in the future.

[Sandidee in reply to Munny22]

I have always gone down 1/2 mg at a time my doctor advised me to a very long time ago.

[Munny22 in reply to Sandidee]

Thank you 😊

[SnazzyD]

If dealing with a flare approach doesn’t work I would consider trying to see someone versed in musculoskeletal issues to see if you have got some postural gremlins. You can als do some detective work yourself. At the end of my Pred journey I was in a bit of a state with neck and shoulder issues and low back and abdominal weakness which then hurt my knees and hips. It was made worse if I tried to do something active like sweeping the path or tidying the shed which just things worse. Even picking up a bag of shopping, “twang!”.

It took me 3 years from stopping Pred to be able to do anything even vaguely heavy duty. I also had to change my pillow because it was fanning the flames and I had to watch my sitting posture. It wasn’t that I was slouching, it was because I have always sat bolt upright and prefer a hard chair. This caused shortening of some muscles, pressure on my sit bones and my hip got fed up with me get up on the same side, twisting the same each time. My body now hates repetition and habits and I have to work on stability muscles all over and flexibility.

[Sandidee in reply to SnazzyD]

fingers crossed I can get this under control. Thank you

[PMRpro Ambassador]

It does sound as if it is possible that the 1mg is just a little bit too low - 1/2mg can make a big difference as to how you feel. Try the the flare approach and see if it helps.

[Sandidee in reply to PMRpro]

Thank you so much I’ll increase by just 1/2 mg and see if that helps I don’t want to go back to how I started.

[PMRpro Ambassador in reply to Sandidee]

You may need a few days of a higher dose first to clear the inflammation out - but you may be soon enough not to need that. But don't be in denial if it does increase - or you may well end up where you started.

[Sandidee in reply to PMRpro]

That’s what I’m worried about.

In the past I have always gone up to 10 mg for a few days but no more then 6 days and then drop down to a lower dose, so I might have to do that then I’ll try 1and 1/2 mg . It’s my neck but its only one leg that’s affected not both of them and my leg doesn’t hurt all of the time.

Thank you so much for your help.

[PMRpro Ambassador in reply to Sandidee]

5mg should be plenty since you have got so low. How long had you been at 1mg before you stopped altogether?

[Sandidee in reply to PMRpro]

I have never stopped completely I have got down to 1 mg but I have pain so have taken your advice and gone up, so fingers crossed I can get back on track.

[Mfaepink1973 in reply to Sandidee]

“In the past I have always gone up to 10 mg for a few days” It sounds like you’ve tried to rush your tapering if you’ve had several flares and you have probably done so again. On such a low dose of pred I would think going up to 5 mg for a few days will get rid of the built up inflammation then back to 1.5 mg and stay there for at least 4 weeks before SLOWLY tapering to 1 mg.

[Sandidee in reply to Mfaepink1973]

Once I reached 10 mg I went dead slow with tapering I go down every two months by 1/2 mg as advised by my consultant at the hospital. Unfortunately I don’t see anyone at the moment for support.

[cranberryt]

I will also add that many patients are left on 2-3mg permanently to prevent future flares. So you might consider staying at 1.5 longer term (after your few days at mg).

[Sandidee in reply to cranberryt]

Oh my I don’t suppose it’s to bad staying on a low dose

[Myfoe]

Like you I wish I had listened more closely to my body I had just dropped from 8 to 7.5mg prednisone like you I had pain in the back of my legs and one shoulder nothing horrible just a “twinge” but I was enjoying a good couple weeks and thought I got this but two mornings later I needed help from bed I couldn’t dress myself it turned into a full blown flare that was in July I still am not back to where I was a jump up in prednisone is a great idea IMO

[Sandidee in reply to Myfoe]

I am sorry to hear that you have had a tough time as well I have now gone up with my Pred so we will see what happens. Good luck to you I hope that you manage to get back on track.