Flare up PMR
Posted , 5 users are following.
I have seen great improvement from the chest pain I have been having since January this year, and would say it is about 75% better than it was, which is great. Since stopping both the calcium/bone protection medications, Alendronic Acid and Calceos the improvement is amazing. I had such pain around the chest area, and also around my back to some degree, and it felt like a tight very painful band around this area. I dreaded sneezing or coughing as the pain was really bad. I have upped my calcium intake as Eileen suggested, and am having a daily glass of whole milk plus yoghurt, cheese etc, so hopefully I may have solved this problem. However I had got down to 4 mg pred with just stiffness in my knees and hips, but no pain, until a few days ago when I had a flare up in my right shoulder, the pain has been pretty awful, and I have had to go up to 20mg to get rid of the pain, which I did not want to do, but had no choice. I am also worried that at this level I could have problems with my eyes again as I have glaucoma, and have already previously had problems. I had operations on both eyes for cataracts, and had to have stents in both eyes as well. following on from this I had a Macular swelling in my left eye, which in March had gone down, but I was due to get it checked out again this month, but that won't be happening at the moment of course. I wonder how long I should stay at 20mg-this is the level I first started at nearly 3 years ago, so feels like a very backward step for me. Fed up or what!
0 likes, 7 replies
peter48568 rosemary83494
Posted
Eileen might know better but do you think going from 4mg to 20mg was too large a jump backwards ?
EileenH rosemary83494
Edited
One recommended approach for flares like that is to add 5mg to the dose where you flared for up to 10 days or so and you can drop back to just above where you flared. Did you try less before going to 20mg? Even at 20mg there is no reason why you can't drop back to a lower dose within that timescale though. 10mg would be about the level - so what about dropping to 10mg once the pain has settled and seeing if that is still enough?
However - the fact that it is just in one shoulder does make me wonder if it is PMR doing it. Usually in a flare of PMR you would have more pain than just in one place. And there are shoulder problems that would also respond to a high dose of pred. I think you probably need to speak to the GP - and ideal would be a shoulder x-ray to be sure something else isn't going on. A&E is there, ready and waiting, and it is safe. Covid-19 and non-Covid bits are separated. It is no worse than going shopping and they have all the protective procedures in place.
rosemary83494 EileenH
Edited
Yes, I did try 15mg for three days, but it did not get totally rid of the pain, I was awake from 4a.m. this morning with it, so decided to go up to 20mg today. I took 15mg this morning, and plan to take the remaining 5mg this evening. Hope it works, so I can come back down again ASAP. When I had a flare up before it was only in my right shoulder for some reason, and for the first year of having PMR I did not have problems with pain in my shoulders or arms, so much so that the doctor wasn't sure if I had it or not. It is certainly a strange illness.
EileenH rosemary83494
Edited
It certainly is!! And that is what is so difficult to get through to most doctors. A top rheumy in the field asked me recently to make a list of "What patients wish doctors knew". Top would be that no 2 patients present the same and next would be that no 2 patients will have the same patient journey!
Haven't done it yet - Covid got in the way ...
ptolemy EileenH
Edited
There was something on TV recently where a GP said that they could not diagnose 45 per cent of cases that presented to them. That is frightening coming from a GP, but I can believe it. One doctor I know reckons that 40% of appointments are not required. Mind you coronavirus has probably sorted that out for them!
I am not so sure I need a doctor who knows things particularly, I just want one who knows where to look it up and act on it.
EileenH ptolemy
Posted
Yes - I have wondered a lot about the 50% figures quoted for attendance at A&E. One would assume a lot of those might be accounted for by no drunks at kicking out time and fewer RTCs! Though maybe there is compensation in the form of the DIY accidents ...
As for GPs - I expect them to know when it is beyond them. They don't appear to do so all too often. In fact, when I think about it, I don't know I have had what I would consider a really good GP for a long long time. And here the local ones are a bit strange, like their alternative medicine!
Only 40%??????
ptolemy EileenH
Posted
You are probably right about the DIY accidents. The drunks must have made a big difference, also car accidents and perhaps people are thinking twice before going now, ironic really all those doctors complaining about how over worked they were are now panicking that not enough people are visiting them. I hate to think what will happen afterwards, there is going to be a mass of people wanting their postponed ops, MRI scans etc etc.