Back to my successful starting dose 3 years ago of 15mg ,and it does not work,

Thank you all for your responses to my earlier post .Managed to reduce to 12mg pred but then pain in legs down back of thighs and real crippling weakness so reverted back to 15mg.Does not seem better in fact worse- whole back, swollen legs, feet feel all screwed up ,waist, up tiredness, headaches ,a lot of dreaming also, what I have to do to catch up with things. They posted me into A&E last Thur. with pains across the top of the chest. Through check up -BP, pulse-(50) fantastic, bloods ok ,my ESR at 5 -that's low ok? co-codamol in small doses helps . Doctor want to review me tomorrow, What can I ask for, Comments general would be appreciated. Thank you ,John

[PMRpro Ambassador]

What you have may not be directly PMR - or at least the leg pain and in the back of your thighs.

Something called myofascial pain syndrome is often found alongside PMR and improves at higher doses of pred, reappearing as the dose is reduced. However it responds better to local therapies which target the area affected and that allows the PMR to be managed with a lower oral dose. Cortisone injections are often used and manual mobilisation of the trigger points in shoulders, mid back and low back is also successful. I found Bowen therapy also achieved a lot of relief - 3 sessions to start with will show if it will work for you, if it hasn't improved then it is unlikely to do so. I did require a session or two at 6-8 monthly intervals for ongoing relief.

[Celtic PMRGCAuk volunteer]

John, if it is definitely a flare in PMR then perhaps the level of inflammation needs a slightly higher dose than your original starting dose this time around.

Yes your ESR at 5 is a good result, especially if you are someone who had raised markers at diagnosis. However, a CRP blood test is felt by some doctors to be a more specific marker of inflammation.

Have they ruled out GCA? That would need a much higher dose to control the inflammation.

Sometimes, PMR can morph into rheumatoid arthritis, or, in fact, some other auto immune condition.

Hopefully, that will provide a few pointers as to what you should ask at your appointment tomorrow. Good luck.

[Hidden in reply to Celtic]

Thank you PMRpro and Celtic for your supportive information and advice. Dr very helpful and listening. Mentioned myofascial pain syndrome and GCA and RA and she took note. In the meantime called for my bloods particularly CPA and arranged an X-ray of my lower spine where matters seem to emanate from. Hastened my meeting with the Rhemy and advised taking it easy and

checked on my pain killer intake. 'Patience is a virtue' is my motto as is 'all the time your swimming your not drowning !' Which is good -as I woke this morning with pain in legs, back of thighs, small of back where it seems to come from, across shoulders and up both sides of neck. It is now 12noon and this is the first matter I have been able to deal with .With a lessening of the upper back pain-possibly due to taking Co-codamol earlier. Hey Ho !

Thank you, John

[Hidden in reply to Celtic]

ON AUG 4th -Celtic&PMRpro. Pain in lower lumber ,with pain shooting thro' Buttocks ,down thighs,sometimes both, usually one-left and weakness -leg just 'disappears .I advised my MED centre, had lumber x-ray showed slight wear in two lower discs, bloods well within limits, put my factors into Google and 'Sciatica! (plus PMR) confirmed. Alendronic Acid is not my cup of tea,daily or weekly, so due soon for an annual dose .take my Adcal 2x daily.

Taking now a antibiotic for left leg wound, ulcer prevention(coffee table) but into 2 days with

it and well ,I shall have to report and take up an alternative? Try to swim

2xWK,but must step up walking for weight bearing exercise for the Sciatica.

John

[Celtic PMRGCAuk volunteer]

John, a member of our Surrey support group has tried Bowen therapy for his PMR. He said it didn't seem to do anything for his actual PMR pain but he found that his sciatic pain resolved after a few sessions. It does seem that for some PMR patients Bowen therapy can help with some of the knock-on problems arising from PMR and, in fact, another member of the group, Trish (who also posts on here), is at present having some good results from her treatments. Perhaps you can find a Bowen therapist in your area who might be able to help you.

[Hidden in reply to Celtic]

Celtic-thank you for the advice ,actually do not think I am getting much problem from the' PMR' but it is the Sciatica for which I had my first Bowen today! Feel less tension-the therapist found it across the neck/shoulders and bottom of spine, down back of legs. A good start ,feel it in my Body. Looking forward to waking up in the morning ,that will be telling.

'PMR'- waterworks infection, knocked lower leg, 2 wounds ulcerating but one ok now, the other much on the mend-thanks to my practice Nurse, bruising over both forearms, that will go as I drop the Pred.

John

[Celtic PMRGCAuk volunteer in reply to Hidden]

Hi John, it's always good to hear the follow-up to things suggested....especially when those suggestions have proved successful! We really have PMRpro to thank for bringing Bowen therapy to the fore on another PMR forum a couple of years ago following her experience with it. So glad to hear that just after one session today your sciatic pain has improved, and I do hope that continues. Hopefully, you were advised to drink plenty of water....and you have followed that advice!