Hi, I am new but have been reading your helpful posts since June 2017 when I was first diagnosed with PMR GCA. I started on 60mg and got down to 8mg when I realised I wasn’t improving. Blood tests revealed my inflammatory markers had gone back up and my Rheumatologist increased my dose to 15mg. He wanted me to take 15mg for a week, 12.5 for a week, then 10mg reducing by 1mg a month. I’m stuck at 12.5. I stayed on 15mg for a few weeks and then risked the reduction to 12.5mg. Unsure what to do from here as I have pain in the lower part of my right shoulder which reaches around to the front, breast bone area. The pain is in line with bra strap. I saw GP who dismissed it and then a physio who is not sure if it’s effect of PMR. I’m keen to reduce as I had a tiny biopsy on my leg in January which got infected as is now an ulcer, currently in full compression socks. I’ve been told steroids are not allowing me to heal so don’t want to increase them unless completely necessary. I would be very grateful for your help please.
Should I reduce?: Hi, I am new but have been... - PMRGCAuk
Should I reduce?
This might sound a bit off the wall, but I have found getting a comfortable bra very difficult during this condition. Straps seem to dig in and give rise to pain. I have eventually found gossamer thin lace bralets in Marks& Spencer that give enough support, have no fastenings and most importantly don’t dig in. I just wondered if this may be worth a try because your pain follows the line of conventional bras.
So exciting to get my first reply. Thanks for the info I will search those out tomorrow. I have taken bra off at times for more comfort. The pain is there with the slightest movement to the right and walking downstairs is painful, not sure why walking affects back muscle. Longer walks affects my breathing a little as the pain stretches around the front so I have it in the back and front at same time. Will definitely try out the bra though.
Ah! I have often thought of putting my query out to you all but thought you all might laugh! So here goes😝when I put my bra on in the morning they fit perfect.....but by early afternoon they feel like a tight band ...not cheapys either.🙈anyone else have this problem.x
Yes Xanthe12345. I mentioned it at a mammogram and the nurse said. “ It’s our age dear”. Bizarre!
Can’t wait to get into my pjs at night.
You wait until night???😂😂
Have you ever seen the old movie “ Woman in a Dressing Gown”? 😳
It kind of ruins slobbing around in nightwear. I always get caught somehow even if it is only the postman.
😂😂😂
Fluid retention - if you can face it try weighing yourself at various times of the day. It sometimes happens to me, the bones dig in something rotten!
No-one laughs at questions here. There is no such thing as a silly question - just silly answers...
You called? 🤣
You do neither - don't do yourself down!
Gosh it’s such a reflex action. It comes of having a sarcastic Scottish father, affection was always a put down. 🤨
He wasn't Scottish, only in name, but it was the great-aunts who fulfilled that role for me. Nothing was ever good enough.
Well you showed them!
Yes. Drives me mad , I was talking about it on my stagger round today with my friend whose 82. The next second she whipped her t shirt up to show me lovely new bra. Not sure what the 2 walkers approaching us thought. 😂 The heat doesn't help.
I also have reaction to elastic though so use non bio washing gel. My fave bra has been washed so much elastic just starting to show and it is irritating. But even new bras i have are irritating too.
Hi suemacd
That is some fast taper for GCA. Any symptoms similar to GCA? I was DX with PMR in June 2016 and still at 8mg.
I had a similar pain last year. From sternum round to the back of my ribcage. It was decided it was costochondritis. I take painkillers for another condition so added another to manage it. It took quite a few weeks to ease. Hope yours eased soon. Ask Dr about it and if it could be that.
nhs.uk/conditions/costochon...
That’s the first thought I had too.
I realise now after finding this wonderful forum that my reduction from 60mg was very fast but at the time I was totally ignorant about PMR and GCA and put all my faith in the Rheumatologist. My temporal pains have gone, I had an ultrasound done of underarms which showed a stenosis on one side, unsure whether that improves as I improve?? Thanks for the link to costochondritis, very interesting, I will certainly go back to GP with that. Did you reduce when you had costochondritis?
No i didn't but I was sort of stuck in a flare too. As pmrpro says and NHS make sure you get everything checked out. I would say it lasted 3minths but once I took cocodamol for breakthrough pain it eased. I did lots a stretches and did a fair amount of self massage. I have found I have had several pop up pains. Housemaids knee...hip pain. All have gone for the moment.
I was tested for stenosis too. Your doctor needs to explain the implications of that finding to you. When they tested me I had worries about other forms of Vasculitis. My blood pressure gave different readings, consistently in each arm. Nothing was found during my ultrasound.
It is all very well them saying you need to reduce your pred for the ulcer to heal - but if the autoimmune part of the illness is still active you need it to keep the inflammation under control. It's also fine for your doctor to dismiss complaints of chest pain, it isn't his pain - but I trust he DID do all the chest pain checks to rule out heart involvement? If he didn't that was a serious neglect.
If the pain is in your breastbone area then it could well be costochondritis and it will ease with time - and the pred should help the inflammation too. Beware of taking ibuprofen or other NSAIDs which are usually suggested - they don't mix well with steroids.
Where is the ulcer on your leg? Who told you to use compression stockings? Are they assuming it is due to venous problems? Have they checked for arterial problems or vasculitis (which is possible as you have GCA) which also cause ulcers? While compression stockings would be used for venous ulcers they are not used for ulcers caused by arterial problems as that would reduce the blood flow even more.
Thanks for your reply. My GP did not check me out at all. Her only thought was shingles, so she pulled up my shirt, said no rash it’s not shingles and that was that. I believe her understanding of PMR is practically nothing, so she puts any ailment I now have down to PMR symptoms. The ulcer is on lower left leg (shin). A tiny biopsy with one stitch has turned out to be the size of a pound coin. I had a Doppler scan which I was told was good. GP recommended compression and now referring me back to dermatologist who did biopsy.
Fair enough - as long as they DID a Doppler scan. There are special dressings for ulcers - but if your GP ignores chest pain she isn't likely to suggest expensive dressings, even if they work! I think piglette on here has had them - she can tell you more about them.
healthunlocked.com/user/pig...
I have to say - I'd be interviewing other GPs. She sounds a liability! You can have shingles without a rash and ANY chest pain of any sort needs to have cardiac involvement ruled out.
After 4/5 leg ulcers, tests, compression stockings which were more painful to wear than the ulcer pain, different dressings, different pain relief, my WONDERFUL surgery nurse tried VISCOPASTE on my ulcer. I could SEE the difference, at each appt. I had been to Dermatology previously, but this is the real MCcoy and not expensive, if not prescribed. IT WORKS!
Hi Sue
I can’t comment on the pain but you have reduced quite quickly and I know to my cost if I do that I simply flare. I have got to 3mgms from 40 for GCA twice and had to go back up and it’s so dispiriting. Now up to17.5 after 4 years. I have had to accept it will take as long as it takes, we are all desperate to get off the steroids but the mantra is slowly does it and if in doubt don’t.
I am sure others will also tell of their experience
Hope you have a good day
Thanks so much for your reply. I am definitely going to take it more slowly than the Rheumatologist suggests.
I am not sure that steroids are not allowing your ulcer to heal. They may slow the healing down a bit though. I had a blister on my lower leg after going to hospital for a hip operation. It became infected and was enormous and nearly two inches deep. It is slowly healing and so did the incision on my hip. Wearing compression socks over a wound on your leg sounds horrendous to me.
I am not sure of the clinical efficacy of manuka honey for ulcer treatment but does seem to be anecdotal evidence and I believe NZ in particular use it to treat bed sores and ulcers.
victoriahealth.com/editoria...
It is used a lot in the uk as well for ulcers and sacral sores. It seems to be the go to dressing of choice atm.
I didn't know if it jumped to us. My wounds heal better now blood sugar steady but I did think of using it last year when all wound took months to heal.
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