Polymyalgia

[Karendeena]

Hi there, having suffered neck and shoulder pain for a while now my doctor ordered some blood tests as the pain was disrupting my sleep. I have been diagnosed with Polymyalgia and put on a course of steroids along with Lanzoprazole to protect the stomach. My doctor is going to call me in 2 weeks as she said I should feel better quickly.

Has anyone here had this alongside their afib? My symptoms escalated after the second dose of the pfzir vaccine and my blood inflammation levels are high at the moment

[CDreamer]

I haven’t Polymyalgia, however, an autoimmune disease usually treated with steroids but my EP was against me taking steroids so my neurologist put me on steroid sparing drugs which took a lot longer to work but resulted in no heart issues. Personally I would always check with my heart doctor an OK for any drugs given by another speciality and vice versa as a lot of the heart drugs I can’t take because of the other condition.

Was the prescribing Doctor a GP or specialist? It may depend upon the steroid and the dose - mine would have been Prednisone and I would have been hospitalised and supervised until stable which would then have determined the dose - which I would have had to have taken long term. If a low dose, for a short time it maybe that it wouldn’t affect your heart but worth checking.

Polymyalgia is so common that I’m sure someone with the same condition will be along soon.

Your inflammation levels will be high with Polymyalgia - I found taking a food supplement called Resveratrol very good - rather than taking pharmaceutical anti-inflammatory and watching what you eat very carefully - avoiding all processed foods will help as they increase inflammation.

Hope that helps and you find relief very soon.

[Karendeena in reply to CDreamer]

Thanks CDreamer, I am on 15mg which is a low dose I'm told. I understand I need to be on these for quite a while (12 months was mentioned) I am seeing my EP on 14th June which means I will have been on them for 2 weeks.

[CDreamer]

There is a Polymyalgia forum which you also may find useful healthunlocked.com/pmrgcauk...

[Mary63]

I have had Polymyalgia since 2016, and developed AF this year....so the other way round from you. There is a tremendous amount of knowledge on the PMRGCA forum on health unlocked. Quite a few newbies there feel there was a link for them with the vaccine. I suggest you join that forum, as the people there are knowledgable empathetic and helpful.

[Karendeena in reply to Mary63]

Thanks Mary, have you taken steroids?

[Mary63]

Oh yes! That is the only thing that has helped the pain. I started on 20 mg in Jan 2016 and have now reached 4.5 mg. the average duration of PMR is actually 5.9 years. So we are in it for the long haul.

[Karendeena in reply to Mary63]

OMG Mary, my partner had polymyalgia and I thought he was on them a long time at over 1 year. I've read that prednisolone can damage the heart so with having afib I font want to be on it for too long!

[Mary63 in reply to Karendeena]

Men often have an easier ride.

[Thomas45]

I've had polymyalgia at the same time as AF and chronic asthma. It took me just under four years to reduce steroids to zero. On reflection it took about 6 month's after that before I felt back to normal.The polymyalgia forum is very worthwhile.

My doctor left the speed of reduction to me. I can remember that I was stuck on 5mg s day for 3 or 4 months before I continued to reduce the dose. He was a very understanding G P, saying that I knew my own body better than anybody else so he would ptescribe as many prednisolone tablets as I needed.

Prednisolone certainly worked for me.

[Karendeena in reply to Thomas45]

Thanks Thomas really appreciate this......I have only just started on 15mg but really don't want to take them! I've only just got my head around having the afib diagnosis last year and don't like taking too many meds

[Thomas45 in reply to Karendeena]

Prednisolone is the only way of relieving the pain and stiffness of polymyalgia. The Health Unlocked polymyalgia or PMR group is very helpful. You will learn from it the way to reduce, DSNS Dead Slow Nearly Stop. Don't rush reduction. Don't let any nurse or medic to force you to reduce faster. Only you know your body.

[Karendeena in reply to Thomas45]

Thanks again Thomas, really appreciate you coming back to me. Doc said I would have to take them for quite a while

[Mary63]

I totally get that you don’t want to take meds. Me too! But prednisolone is the ONLY thing thing that sorts PMR and i know we need heart meds. I can’t believe it. But I feel it is necessary in order to be ok!

[Karendeena in reply to Mary63]

Thanks Mary, just not used to all this pain, literally had to force myself to roll over in the night which was very difficult

[Mary63]

I know. The pain untreated is horrible. Steroids get a bad press, but are miracle workers with PMR. Have you joined the PMRGCAUK forum yet. If not I urge you to do so.

[Karendeena in reply to Mary63]

Yes I have Mary, thank you x The steroids seem to have started working now and I feel much better, just scared of taking them with afib and the other drugs I'm on. Seeing my EP in 2 weeks time I will let you know what he has to say about the steroids

[Mary63]

I wish you the very best

[Karendeena in reply to Mary63]

Thank you