Flare Up

[Simplewish]

I've had Polymyalgia since Jan 2019 and was on 20mg Prednisolone. I've gradually tapered to 2mg and 1 mg alternate days and thought I was doing fine. Last year I had six months of feeling faint and actually passing out but am now on blood pressure medication and have been fine since November 2021. The doctor had referred me to Neurology but they have only just been in touch. Although I said that I hadn't had any episodes since November the neurologist referred my for 24 hour blood pressure and heart tests and a heart scan in case I have the fainting symptoms again. I had a blood pressure cuff fitted last weekend and it inflated every half hour in the day and hourly during the night. It was very tight and painful when it inflated and has left my arm bruised and a red rash under the skin. It has really upset me and I seem to have started with neck and head pains as if it has made polymyalgia flare up. Could this have happened or is it because it has stressed me. Has anyone else found that other medical intervention has caused problems.

[DorsetLady PMRGCAuk volunteer]

I would say stress has made you flare rather than the cuff per se-but can understand that if it were tight and uncomfortable that didn’t help.Skin can be very sensitive when you’re on steroids, so that may well account for the bruising and rash - have you used anything on the rash? Arnica can be used for bruising, but not if the skin is broken or rash on skin rather than underneath.

Might be worth seeking advice from GP or pharmacist. ..and maybe back to 2mg each day and see if that helps.

[PMRpro Ambassador]

I've had the 24 hour BP Holter check too, a couple of times. It does inflate rather tight and I got tiny bruises as well. It didn't make me flare though. But I'm sure if you got uptight about it it could well and I'm sure you are worrying about why neurology want these tests.

Interesting that they are fiddling about looking at BP - has no-one thought to check your adrenal function at such a low dose of pred and symptoms that could be due to adrenal insufficiency? Why refer you to neurology? An endocrinology referral would make more sense! What dose were you at when the feeling unwell started originally?

[Simplewish in reply to PMRpro]

Thank you for your reply. I do think I got really stressed due to the pain and we have a way to travel to the hospital. The doctor who referred me to neurology was a locum and of course it was a telephone consultation so I think he was worried about me having stroke as I was having visual disturbances as well. I will probably go back to 2mg a day for a short while. The biggest problem is knowing what is due to PMR and what are other causes and symptoms. I thought neurology would begin with a scan of my head rather than checking my heart although am having a24 heart monitor and a heart scan but at least they shouldn't cause any pain.

[piglette in reply to PMRpro]

It is strange, when I fainted the hospital decided it must be heart problems. They looked at me as if I were mad when I mention adrenal glands. When they had done all the heart tests they then just gave up and decided that it was just me, like they have done with my high CRP and ESR. At least my brother diagnosed I am on the wrong planet, as I also have a very low temperature.

[SheffieldJane]

That sounds like a really stressful procedure and that cuff was definitely too small - it doesn’t have to feel like that. It’s no wonder the dragon’s stirring. Incidentally, have you had a simple morning Cortisol test or a Synacthen Test? This is to ensure that your Adrenal glands are working sufficiently. This could account for your initial symptoms, if they are being slow to take over from the Prednisalone.

[technogran]

I don't have polymyalgia but GCA and I started on 60 mg prednisolone and 3 years later am on 11mg, what I want to say is that I never ever had high blood pressure even when I was pregnant but I have it now and its just since I went on to prednisolone so I think that is the main cause. I am also inclined to believe you are tapering too quickly. The consultant told me if the headaches returned I was to go back to the last dose I was on before the headaches. Personally, I don't think its stress, I think its a physical reaction to a lower dose before you're ready for it. Good luck anyway.