Now I understand my Rhumie: Hi I have just received... - PMRGCAuk

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Now I understand my Rhumie

sailorman
sailorman

Hi I have just received the report from my Rhumie after my last visit about a month ago. She was not happy that I was reducing so slowly, I explained that I had had a relapse, I should explain I started on 10 mg two years ago have reduced down to 5 mg and was trying to get onto 4 mg, when I had the relapse so went back to 6 mg then tried to reduce again when I saw her I was on 5 going on 4 mg, she said I should be able to reduce at 1mg per month. What she said in her report made more sense than at the appointment. The relapse was not a relapse but my old aches and pains from before PMR which had been hidden by the Prednisolone, when I think about it she is of course correct, my shoulder pains were not caused by PMR because I have had problems for years long before PMR , I have also had a torn tendon on my right arm Bicep.

So I am now almost down to 3 mg just one more day at 4 mg and then after Christmas I hope to get down to 2 mg.

Happy Christmas everybody Mike

12 Replies
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Yellowbluebell
YellowbluebellAmbassador

Congratulations to getting down so low and you are definitely wise to leave anymore tapering until after the festive stress. I have had 10 ops on shoulder so expect i will start to feel more problems and pain in it when i get lower just like you. Good luck🥳🥳 YBB

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi,

If they are non PMR pains does paracetamol help? - quite safe to take alongside Pred.

Although at 2 years they could well be PMR.

A simple test - if paracetamol help it’s non PMR - if it makes no difference - it probably is PMR.

bakingD
bakingD in reply to DorsetLady

Hi just wanted to check I find Paracetamol helps me with PMR pain- also Kate Gilbert mentions in her book the use of Paracetamol alongside Prednisolone- it does have anti- inflammatory effects doesn't it?

Hidden
Hidden in reply to bakingD

This is a good description of Paracetamol, it is used for pain & to lower temperature, no anti inflammatory effects.

nhs.uk/medicines/paracetamo...

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to bakingD

No, not anti-inflammatory. I think Kate said it helped with her whilst she was tapering - in particular steroid withdrawal symptoms.

Blearyeyed
Blearyeyed in reply to bakingD

It doesn't help with PMR Pain in the sense you usually think of it.

It helps with the non PMR aches and pains in muscles or nerves which can add to your total Pain while suffering with GCA or PMR.

It helps reduce PMR Pain by stopping it being triggered and flaring up again by reducing the symptoms of other things like Muscle Tension or Muscle injury , Side effect Headaches , Nerve Twinges , Temperatures from infection or post surgery and Minor / Moderate Tissue inflammations .

That's why we always suggest that if you have Pain or New Symptoms which you cannot be sure is a PMR or GCA Flare Up , try standard painkiller medication first , if it works , the Pain you may be suffering may not be PMR and you may not need to increase the Pred.

sailorman
sailorman in reply to DorsetLady

Yes thank you for your reply Paracetamol do help and my doctor has prescribed them for me.

PMRpro
PMRproAmbassador in reply to sailorman

Careful with the paracetamol - no mixing with cold remedies and the like that also have paracetamol in it.

Hidden
Hidden

It could be a wide variety of potential problems. As a general rule I think it is better to listen to my rheumatologist over any internet source. They have access to your medical records and can do a face to face exam and other tests. For sure , they sometimes don't explain things very well. I always review the notes after the visit and asked for clarification as needed.

Congratulations on your progress.

PMRpro
PMRproAmbassador

You are at a good low dose that any decent doctor wouldn't complain about. Communication is all - and she should have explained that to you at the time. But she also cannot say how fast YOU can reduce.

Well if that fits with your symptoms, press on. Be aware poor Adrenal function can make you feel generally blerg! At this stage too - wiped out - sick, just not well. You may be lucky and be fine.

Paracetamol is an analgesic and antipyretic. It is not anti inflammatory in the sense that it doesn't act on Cox-1 or Cox-2 receptors.

So in plain English, it is a pain killer and reduces elevated temperature in fevers but it does not prevent release of inflammatory chemicals which cause inflammation.

Since PMR is characterised by over production of Interleukin-6 (an inflammatory cytokine), that is why the "paracetamol test" is a good one to establish if the pain is due to PMR or not.

As always in medicine there is always the get out clause of "everyone is slightly different"!!!

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