Hi, and thank you in advance to all who have the patience to read this long story, and the kindness to offer advice: I have so many things going on at the moment! Currently, PMR seems like the least of my problems, and I’m hoping I can ride the other medical turmoil I’m in without it raising it’s head.
Re PMR, I was diagnosed in 2020, symptoms exclusively in the arms and shoulders, and have tapered since, apart from one small flare in 2022, to 1.5mg. It seems to be under control. I’ve paused tapering for my hip replacement, which was done on 10 February. The hospital increased my dose to 3mg for 48 hours over the surgery, and now I’m back on 1.5mg.
The complicating factor is that I have a very volatile blood pressure, and actually suffered an aneurysm in 2005. It tends to shoot up in a spectular way when I’m anxious, so of course it did that when I was in hospital (I’d also suffered a very stressful period prior to admission making arrangements cos my partner has dementia). I didn’t believe it was possible to have such a high reading and survive. In the end they realised it wasn’t going to go down much while I was in hospital, so they sent me home, but obviously it’s being followed up.
Normally my BP is successfully controlled by medication, but my readings have been creeping up a tiny bit over the nearly 4 years I’ve been on pred. The reason I’m posting today is, I’ve felt some arm discomfort over the last couple of nights - nothing like what I had before, and not enough to keep me awake for long - and I’m wondering whether to increase as for a flare. I have no symptoms during the day, and I’m worried about the effect it might have on my BP. I’ve started taking readings ready to report to my GP next week, and it seems to be back within normal range.
Otherwise I’m recovering well, thank you!
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calibriel
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The term "arm pain" always makes me uneasy! Is it bog standard PMR pain? Is it on both sides or just one or the other? If so, which and where?
Being nosey - what was your BP? The day my daughter was born mine was 240/190-ish - the ish is because they were using a normal BP cuff on the obstetrics ward, not a hypertensove cuff, so it was probably even higher. I had an epidural anaesthetic - the anaesthetist was sent to talk me into it and crept round the door expecting resistance as it was a very new concept back then and the relief was visible when he asked "Has anyone spoken to you about anaesthetic?" and I replied I'd assumed it would be an epidural. A side effect is reducing BP. It fell to normal and never budged again! Has gone up a bit with age but nothing drastic.
That is an impressive BP! Mine also started playing up (a long time ago) during pregnancy, and I think that’s one of the reasons it’s now so volatile: I spent a long time in hospital as an antenatal patient, being told I could go home if it went down; second time around I had a 2-year-old at home to miss as well. Now the slightest suggestion that it’s going to be read sends it through the roof.
This time it peaked at systolic 220. I never really paid much attention to the diastolic: mine is usually pretty good, but I know it went up. I thought they might not operate, but as I was having a spinal they knew it would come down. Afterwards, I thought that was it, but then over the next 24 hrs it started to creep up again, and in the end they were trying to get a reading below 180 so I could go home.
Re possible PMR and my arms (both): problems before definitely started in my shoulders, whereas this is discomfort rather than pain - I can get back to sleep - and it’s in my upper arms. Wondering if it’s connected with walking using sticks, especially as I probably have some arthritis is my shoulders/arms as well? I’m thinking I might give it another day, and see how it develops.
Yes - I was admitted for a few days "to get it to settle" but it didn't really.. I was let out for the day to buy a new 3 piece suite the first weekend as it was stable, if high, then it would rise, settle but higher for the week and then start again. I was in for a month with nurses having a fit if they hadn't looked at my notes and panicking until they were told they MUST tell me what it was, not just put the bed flat, close the blinds and rush to find a doctor having said nothing! At some point the consultant decided to give BP medication which did nothing except stop me sweating and I sat on the edge of the bed watching my feet swell. "Oh look, oedema, pre-eclampsia!" N was "fetched" 8 weeks early, 1300g. A close friend was BP meds rep for the relevant company and he was horrified.
Second time round BP was their concern - it never budged but the placenta wasn't performing and she didn't grow, Another month in hospital "every day is a few more grams" - in a foreign country with no family around and a nearly 3 year old with next to no German. A colleague of my husband took her and his wife and 4 children had her happy and fluent in German in no time! F was "fetched" 5 weeks early, in time for Christmas and before I went totally doolally. She weighed the grand total of 1090g - at admission they claimed she was about 1300g so I asked had she lost weight! Then they couldn't cope with me visiting in the NICU and playing with her in the incubator. Germany was years behind the UK in neonatal care - leave them to sleep and grow was their concept. Nor could they envisage a fully breast-fed preemie - both mine were.
Well done for doing so well with the babes. Mine were only a little bit early, but second time round it was twins, and I breast-fed them, which was considered pretty keen at the time. I did try a bottle once, but they didn’t like it. In the end as my son was ‘failing to thrive’ (I think he was born starving hungry, because he used to take it too fast and bring it back up) I introduced solids a bit early, and they were fine
Mine would lie with their mouth open and screaming until a bottle was taken away! No idea how they survived in NICU because although they got my milk it was often in a bottle. So I thought they would continue to accept one. No such luck.
My blood pressure skyrocketed when I had a kidney stone. I cannot remember what it was but 260/??? rings a bell! The ambulance attending me had a trainee paramedic onboard. The older qualified paramedic delighted in the fact that I presented a wonderful training opportunity saying to his colleague that you wouldn't see blood pressure that high very often. Obviously it was because of the pain I was in. So they used everything thru had onboard to help me including gas and air. The older paramedic assessed the younger one all throughout so they could complete several parts of her required assessments. I have to say that I was asked for consent and I got the best care from these two paramedics. I hope she passed her finals.
My blood pressure went a bit wild whilst I was looking after my hubby with terminal cancer. My GP put me on blood pressure drugs. When I had my back surgery last year the surgeon and anaesthetist were surprised I was on the meds as my BP was in normal range. My new GP has also said that if my BP continues to stay on the high side of normal where it's been all my life then I can consider coming off the drugs. We agreed to see what my BP was doing in 6 months. I regularly test and it's stayed in normal range most of the time.
Pain and stress obviously put my BP up but I don't think it's anything to do with my PMR or prednisolone.
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weaning off Pred 
Reduction in pred dose 
Prednisolone and diabetes / high bp worried sick about all the side effects 
Post PMR 
