Have been having pain too in hips, legs and shoulders after following rheumy's tapering method. End of April on 16mg which she wanted dropped to 15mg straight away for a month. Just started 15/12.5mg alt. days until next month, then onto 12.5mg daily in July. Have also had swelling around ankles and calves and numerous cuts and abrasions on lower legs and arms due to pred thinning my skin. Just a glancing rub against furniture/boxes will produce a bleeding cut (no pun intended)! Two days ago my lower leg had a cut that after bleeding stopped it started oozing loads of a clear liquid which left a pool on floor. I thought I had spilt my tea at first, then blamed my poor Bengal cat for peeing on the floor. He has a good pedigree but some dodgy habits that aren't found in my moggies!
I saw gp today who thinks it's linked to my diabetes( pred causing raised sugar levels) and ordered bloods to check kidney function, ecg and chest x ray and other tests.
Thought I was doing well reducing pred and feeling able to be a bit more active. C'est la vie! Sorry for the ramble.
ps received copy of letter sent to gp from rheumy - quite sarky, saying side effects of pred explained in detail to me and would gp prescribe pred per her tapering regime. So no chance of me upping dose if I feel I need it! Due another appointment in August and not looking forward to it.
Hi ConventCassie. It may well be BP meds - had more side effects and problems with those meds before. Never thought to mention it to gp (probably wasn't listening anyway)
My internist prescribed the med.. But I figured it out (boy! do we need to keep on top of things.) He changed my med & all gone. It was a bear when flying & subsequently!
I got swollen legs, ankles and feet when I started pred. I just had to have a pin prick and clear fluid would pour out of the cut for up to two weeks afterwards. It made a real mess of the sheets. I do not have diabetes. I was tested for heart failure which it was not. My current GP is blaming the steroids.
Interesting ,Piglette. I've been on pred since Dec 2016 and only just experienced this very weird situation. Even though lots of fluid comes out the swelling of feet and legs doesn't go down. As I sit typing there's another pool of liquid on floor from leg - wont blame cat this time.!
i think it may have started a year or so after I began taking pred. I first had this liquid on the front of my leg and I could not even see a cut. Then I scratched myself with some rose thorns and it poured out. As you say it did not make a blind bit of difference to my legs!! Recently it has improved on a lower dose of pred. Here is hoping. I am so glad I have found somebody else with this problem. The doctors just say Oh it is the steroids.
The swelling is bad enough but when you're out and fluid seeps through dressings etc it looks like I've peed myself. All I need is people thinking my pelvic floor and bladder failing me too. lol!
I too had/have very swollen ankles and legs and now think it's the result of pred. When this swelling first happened I did searches here on it, but found little mention. This is the first time I've come across stories of the same problem (though I had no leakage of water). Thanks for sharing. Diuretics didn't make much difference to my bloated calves and ankles, and resulted in deficiency of magnesium and potassium so I had to discontinue after only a few days. Doc then prescribed compression socks, which despite good advice on applicators I found so hard to put on that I discontinued those too. BUT... A few days after discontinuing the diuretic I had started losing weight. The opposite of what you'd expect! I think I lost mostly water via waking in the night to visit the loo. I'm now tapered down to 9mg of pred, and since the trying of the pressure socks at the beginning of April, have dropped from 115.5 lb to 104.4 lb this morning. Ankle and calf swelling have gone down. How and why?? All very puzzling if welcome.
How many of us out there with swollen ankles and feet? PMR and preds seem to create a myriad of other problems for us. Swelling not too bad today and wound leaking less. Tests gp requested can't be done until 28 June (bloods and ecg) and 2 july for doppler test .- hope it's nothing serious!!
thank you for article pmrpro. Lots of conflicting info on how diuretics work , or worsen effects. I'm in that nbc (not a bloody clue) area again. The piece on extra fluid in blood can cause fluid retention. It made me think that everytime recently I've damaged skin and it has bled, how runny and thin blood was. A month ago they had problem getting blood out of me. Unless symptoms get worse I await test dates.
I am currently on 8 mg. My skin is a mess on lower legs in particular. I have had spontaneous breakouts of bruising and under skin bleeding without injury. Once it looked like I had been in a car accident on my whole inner right thigh wrapping around to back of knee. I had done nothing. A biopsy concluded "hypersensitivity reaction with a lot of technical jargon I don't remember now.
I fell a few months ago and scraped my shins and blood poured out like crazy, like fluid and blood. Still visible scarring.
Like you, the slightest bump or brush against something produces a big blotch not consistent with the little brush.
I keep a large supply of bandaids of all sizes. What can we do to protect our skin? I also receive bioidentical hormone replacement in pellet form.My gyn uses an instrument to open skin enough to insert the pellets high outer buttock after local anesthesia. She has been treating me for 5 years, but last visit in May, she said OMG, you have a gush of blood tinged fluid coming out; it took her a few extra minutes to stop it.
I guess this is the price we pay for our need for Prednisone.
Hi Christophene47, wow it seems you're in a worse mess than me with all your bumps. I tried disguising dark blotches on arms and legs with fake tan - what a mistake! I looked like I'd been tangoed, very orange skin. Won't try that again. Had to wear longer length dress to wedding recently to hide all plasters on my legs!
After six years on prednisone , my legs started leaking also. It turns out my veins are leaking in my legs. They blame everything on prednisone but I think it is connected to my heart .
Hi 30048 and piglette. I'm due blood tests,ecg,doppler test and chest x ray too. Think gp folowing that route as although asthmatic I haven't been breathless (pred helping with that) but he seemed concerned after checking heart and chest. Looks like full MOT due soon!
They are not. They mentioned laser treatments but I declined. I had the test mainly because my kegs hurt so much at night that I wanted to be sure I did not have blood clots.
I don't know if this will help but for a while, quite recently, my lower legs ached so much when I went to bed they would wake me up. Then I read a post on Patient forum from someone who was doing exercises to improve blood flow in the lower extremities. I started doing just one exercise, flexing the feet up and down, so you point the toes, then bring the toes back up as far as they will come, pretend you're pointing your heels. I've found this has helped a lot. I try to remember to do it occasionally during the day, too, even when my legs feel fine. I have no idea why my legs were aching and my doctor, when I mentioned it when it first started happening a couple of years ago, just said she wasn't worried about it. 🙄
There are probably other exercises as well. Sorry, I can't remember what the individual on Patient said the condition was he had which he was researching exercises for, but it was something to do with blood not flowing properly in the legs.
Hello HeronNS. will try this exercise. I do get cramp like problems at night usually. The calf doesn't go into spasms like ordinary cramp - more like a fixed spasm. Sometimes my toes flex up in fixed position and I manually force them back down again. I thought it was my Fit Flops but still happens with other footware. Am taking magnesium tablets now, 250mg daily, and this has helped.
I used to get those cramps, awful. Come to think of it haven't for a long time - probably because I've been so careful with calcium and magnesium lately. What I get now is a sort of deep seated ache. But the flexing definitely has helped. And improvement seems to be ongoing so it's getting better with time.
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