Pain free??

[Bonsaigirl]

This may be obvious but is the idea that you should be pain free when on your current dose of pred before tapering down or just as comfortable as you can be.. I have never been pain free what ever dose I have been on and some days worse that others which has added to my confusion on tapering. Thanks

[SheffieldJane]

Not everyone achieves “ pain free”. I think we should be able to achieve at least 70% relief with Pred for PMR/GCA tough. There are of course other sources of pain like osteoarthritis. Then withdrawal symptoms ( Pred) and pain from struggling Adrenals at low doses. This is explored further in FAQs.

[oscarina in reply to SheffieldJane]

COULD YOU SPECIFY JUST A LITTLE MORE WHAT TO SEarch for in FAQ to get inof about struggleing adrenals, have to negotiate with my MD to get back on pred after a fast tapering that had helped significantly before terminating it, now have two butst Bakers cysts and reappearing PMR shoulder and pelvic stiffing up, thanks much.

[DorsetLady PMRGCAuk volunteer in reply to oscarina]

FAQs -A -G listed alphabetically -also linked for you -

healthunlocked.com/pmrgcauk...

[Bonsaigirl in reply to DorsetLady]

I have looked at this thank you and found it helpful. One thing that still confuses me is the flare up point. My PMR has been confined to my legs but the flare up if is that is in my neck and shoulder. The increase in preds has improved my leg pain but not helping with neck and shoulder which I am surprised at. So can the flare up affect any part of the body?

[DorsetLady PMRGCAuk volunteer in reply to Bonsaigirl]

If it’s not helping neck /shoulders then perhaps you have to consider it is something other than PMR. Have you tried ordinary painkillers or warmth?

Osteoarthritis? Or bursitis -which very often accompanies PMR..

Unfortunately it’s not always the first thing we think of…,

[oscarina in reply to DorsetLady]

thanks, will get busy researching.

[SheffieldJane in reply to oscarina]

As DorsetLady has answered you, I don’t need to. 🌻

[DorsetLady PMRGCAuk volunteer]

Ideally you should be pain free, but not everyone is… so the criteria is you should feel as well as you did when on the initial dose - and that is at least 70% better than you did before you took the Pred.

But looking at your last post in which you said you started at 30mg - that is high for PMR, so should have made you feel really well. Did it?

Plus at the end of each taper, you shouldn’t feel any worse than you did before you started that taper.

As you also said in previous posts you found it difficult to accept you have PMR - so I wonder have you actually been managing it as best you can. And despite what your doctor may have told you at the outset it lasts a lot longer than 18 months..

I do wonder if it is “just” PMR.

[PMRpro Ambassador]

To some extent your level of symptom relief at the starting dose is your guide and you should never feel worse at the end of a taper step than you did at the start. Of course - that does depend in being on enough at the start! But some people never are totally free of pain - especially if your PMR includes a lot of myofascial pain syndrome effects.

[Twopies in reply to PMRpro]

what do you mean: “if your pmr includes a lot of myofascial pain syndrome effects”? I know what mps is, I’m wondering what it means if it is included in your pmr? Thanks,

[PMRpro Ambassador in reply to Twopies]

MPS can be part of PMR, it is more common in PMR patients. But the things it causes rarely respond as well to oral pred but there are ways of improving the symptoms. Just taking oral pred will not achieve a massive improvement - but targeted steroid injections and good physio and therapeutic massage can.

[Bonsaigirl in reply to PMRpro]

So this pain in my neck and shoulder could be myofascial pain syndrome and not part of my PMR? How do I know that ?

[PMRpro Ambassador in reply to Bonsaigirl]

Needs a good diagnostic examination by someone who knows what they are doing. The first I had was an orthopaedic specialist, latterly it is my rheumy.

[Bonsaigirl in reply to PMRpro]

Thanks that is the next strep for me. Appreciate all the help you have given me, and everyone for their stories and tips.

[Body_bonkers]

I am wondering the same. My initial improvement was 90% and initially let it slip a little until advised otherwise here. My GP’s told me to just accept it when it dropped to 70% and rheumatologist has still put me on a taper plan when it is very slowly but surely getting worse

[DorsetLady PMRGCAuk volunteer in reply to Body_bonkers]

rheumatologist has still put me on a taper plan when it is very slowly but surely getting worse

Well as you know that’s not the aim of the game! Is your rheumy aware you are getting worse? That’s a sure sign you are heading for a flare - if not already in one….

You need to remedy the situation, but sorry to say you don’t seem to have support of your medical people….

[PMRpro Ambassador in reply to Body_bonkers]

If it is steadily getting worse - that is a major red flag. At least you need to stop reducing the dose and at best go back up to the dose you were last good at. Otherwise the left-over inflammation will build up over time until you are back where you started - and the risk is, the ****** rheumy will try to say it shows it isn't PMR.

Treat to target ...

pubmed.ncbi.nlm.nih.gov/368...

The target is remission from symptoms - initially drug-induced with pred. And you use the pred appropriately to maintain that.

[Body_bonkers]

Planned to email list of symptoms and treatment response in advance of telephone consultation so there can be no miss-understanding but all I can do is send it to generic NHS admin address. The GP’s won’t help as supposedly under the care of some sadistic rheumatologist

[Blossom20 in reply to Body_bonkers]

Sounds an awful dilemma. Surely you can ask to leave the 'sadistic rheumie' and go back to the Gp? Or ask for a different rheumie? (Mind you, so many people on here complain about their rheumies forcing them off pred and causing them pain. I'm so glad I stayed with my gp)Let us know what happens..

[Body_bonkers in reply to Blossom20]

Already sought second opinion privately and told to try the taper plan as apparently the high dose steroids might actually be causing some of the inflammation. I’d accept some more suffering to get off the steroids but not if it just lengthens treatment in the long run. Reckon the initial GP mishandling has added at least 5+ months on steroids already. Want to believe in professionalism but the private confessed to training and being friends with the NHS one - said no issues with performance but to really stress my symptoms and initial response at next appointment

[PMRpro Ambassador in reply to Body_bonkers]

"apparently the high dose steroids might actually be causing some of the inflammation"

Now THAT is bonkers ... I would love a few references to back up that statement.

[Body_bonkers in reply to PMRpro]

Agree - still in disbelief to be honest PMRpro and just can’t stop thinking about the lady who had the same stupid GP taper plan but was put on 70mg to give it a blast. Fear my future responses to tapering will be worse now because of this messing about

[Harry8388]

I feel really Lucky I have been pain free since commencing on Pred so much so that I wonder if I really need them so I’m some ways that feels confusing

Sorry I have not really helped you.