Hi all I've been on pred for 5 years, I was lucky as my doctor didn't take very long to diagnose it. I'm now down to 3 mg , getting down to 7 was relatively easy, but it has taken much longer to get to this dose.
My question is about the skin thinning and mainly my arms and hands getting these ugly red purple marks, not like ordinary bruises, don't even remember doing anything to have caused them!
I am very grateful to everyone that posts on here, as I don't personally know anyone who has it, and have never heard of it until I was diagnosed
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kate1978
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Aaaaagh!!!! Arms, hands, legs, thighs, hips.... I look like the daughter of Satan, if he fathered a child with a Dalmatian! Straight from the the depths of Hell.
Even though there are now over 7,000 posting on the forum they are all different. This is a rare condition for women and even rarer for men. Every one has additional conditions so very few are alike. I don't know anyone in my immediate circle who has G.C.A. but then again I am very peculiar, with Klinefelters Syndrome, and nine other conditions. Yes I know I'm greedy but most of what I've got only came to light when I was being treated for other things.
Many of us suffer from the red patches which appear without warning. I had thin skin when the Testosterone started in 1996 and the slightest knock brought a bruise that spread sideways made even worse by the steroids brought by the G.C.A.. The spine fracture makes me unsteady on my feet so I regularly walk into door frames knocking my elbows even though I try not to.
Anyway I'll stop and let someone else have twopennyworth Keep smiling and posting
Thanks Colin... *smiling* I assume you're referring to Beelzebub himself, procreating with a Dalmatian and MY being the outcome? Hahahahahahahahahaha. Well in my mind's image, that's exactly what I look like. : O
You are bit greedy, huh? NINE? Plus the one, so 10!!!! Wow! I thought I was being rude taking two AI illnesses and now neuropathy!!! ....but 10!!!!
My "red patches" are blood filled, pancake sized, birth marks from HELL! They are hideous, unsightly and everywhere!!!!
It does not help that I have a healthy ego and am more than a bit vain... I'm convinced the Universe is testing me... In a short 9 months I have become ill, fat, double chinned, walk with a limp, unemployed, thinned skinned, cranky, covered with medium to large "red patches! " Shhhhhhh, I think I can hear the Universe laughing in the background...
And YES, isn't it amazing there are over 7,000 of us on this forum and we all have different stories!
Your reply made me laugh out loud . I know it's not funny, but I can't believe there are 7000 people with this condition, and thank goodness for this site, I haven't been referred to a rheumatologist, just had some blood tests at the beginning and manage it myself now, helps reading this site
That is over a period of several years! I also know a load who have never joined this forum. PMR is the most common cause of rheumatic problems in the over 60s - there are a lot of people out there with it!
Hehehehe! Good, I can only hope you had a mouthful of tea at the time!!!!! If we don't laugh, we may cry! Good on you managing it by yourself.... Are you on Pred? Who prescribes?
Cool. I have many less doctor's appointments than I used to, but still see GP, Rheumy and go for blood work often... Good luck reducing and keep up the good work!!!!!
This site has been an absolute godsend for me as I'd never heard of it. Likewise I'd never heard of the other swine and i was born with that and diagnosed when I was forty-six. It's wonderful that many of you have a sense of humour (English spelling), makes me laugh out loud. Something I haven't done for a long time as my sense of humour went when my darling Janet died in 2016 a month after I fractured my spine bone.
I've only got G.C.A. started on 60 mg in January 2014 after the affirmative "Biopsy" got to 3.5 mg after three and a half years and then had a flare and went back to 15 mg. and am now reducing again after the second flare at about 6.5 mg. I was still on 8 capsules of Paracetamol a day as pain relief for the fracture and the Osteoporosis that had restarted before my 2016 DexaScan. Osteoporosis is a side effect of Klinefelters because my natural testosterone is practically non-existent and must be supplemented by a back thigh injection every 28-days. The injections started all the manly effects that hadn't started naturally at puberty, grew a nice beard, and hair all over my body. I'll stop there remembering that most on here are female. I've learned a hell of a lot and hope to be around a lot longer to learn more.
I am down to 2mg pred and my skin has improved slightly. Still have to be careful with my arms catching on door handles. My Rheumy said it won’t completely recover.
Not new, but seems to be getting much worse, last week I had one really big one, which actually looked more like a burn. Coupled with lots of small ones and a torn piece of skin, where I caught the door sideways, my 8 year old grandson asked me what they were, is it because you're old? 😏
Or even that fat lady with the big beard! Good heavens I made a funny perhaps my sense of humour is coming back or not.
A big beard is something that arrived when the Klinefelters was diagnosed and I was started on Testosterone Replacement Therapy via sharp needle in my thigh. The surgery nurses are very professional and do alternate thighs so that the scar tissue doesn't build up. The Healthcare Assistants try to do that in my left arm when they are taking blood for C.R.P. testing as for some reason the veins in my right arm are buried very deep and difficult to find so the left arm gets all the needles.
I have purpura the purple blotches too. Mine started very close to when I started pred. Sometime I look as if I have been in a fight with a wild animal other times I just get the odd splodge. I am not sure how they happen either.
This happens to me too piglete ,usually if l knock against something or even just rub my skin too hard.lt does seem to be because the steroids cause thinning of our skin.
Well done for getting over the hump of 7 mgs, save me a place!
I would see my doctor about this bruising. I wouldn’t expect this side effect at your level of steroid dose. Having said that I think Pred is having its last snap at my heels too. Get it checked out though there are other causes of this symptom. Good luck and let us know what happens.
Yes I will make an appointment to see doctor, it's not that easy to get one, we have to ring at 8am, of course it's perpetually engaged, and when you finally get through al the appointments have gone😣
Sounds just like mine Kate. I did see my doctor, a bit of a waste of time as she had not got a clue. I have since discovered that quite a lot of people on this board seem to have the same problem. Mine look awful to start with and they slowly fade. I sometimes look as if I have been in a fight with a wild animal. I am often amazed people do not comment more, perhaps they are being polite.
It is not a fair system. People have fancy phones that keep dealing for them. Get a fancy phone! We are so fortunate in the U.K. not to be bankrupt by this condition.
Yes I cannot put my feet up unless my heels hang over a cushion. I meant it figuratively too, odd symptoms on what I thought might be the home stretch, in a long distance race. Ear nose and throat, cough, dry mouth, upset stomach. Deathly fatigue seems ( shshsh) better, relatively.
Purple spots/patches are certainly a part of Pred treatment, but they also come with age. My very healthy and robust brother, almost 84has them all the time. He says that baby aspirin, and ibuprofen cause them for him. Thin skin, fragile capillaries, and voila.
I had them at higher doses of Pred, but by about 7 mg, as my hair started coming back my skin returned to normalish.
Oh gosh I haven't had my hair falling out! I did put one and a half stone on when I was at 15mg I do wonder if the per is stress related, I was having extreme stress at the time
My weight is fine now, could do with putting some on
Most of our stories contain a period of unremitting stress or a bereavement, or working too hard under difficult circumstances. Occasionally a virus is sited.
I'm sure there is a a connection with stress , I had pneumonia and was in hospital for 10 days as soon as I felt a bit better I started cleaning the windows and the next day was in awful pain. It got to the stage where i couldn't turn over in bed or get out of a chair, plus was very worried about my son and was exhausted
Oh my, the purple bruises do look bad. I keep telling my husband to stop hitting me at night, lol. A friend told me to try Milk Thistle to help with this. I got a bottle this week and started a couple capsules a day. We shall see what happens.
Goodness knows why milk thistle should work on purpura. People do think of it as a cure all product. The spots disappear in a couple of weeks anyway. It will be interesting if milk thistle makes any difference to you.
I got them when I was tapering from 6 to 5. My CRP was 13. I went to 7 for 2 days, 6 for 2 days then started DL’s method to try 5 again. The marks faded just in time for my son’s wedding Labor Day weekend on a riverboat in Oklahoma!
I have many of them. It's from the prednisone. legs and arms bruises and if I am hit with something just a bit harder or bump harder the skin tears right off. I am wondering if people who started off with dry skin have this sooner and more than people who had that soft good skin.
Yes I still have scars on my legs from 3 years ago, when I used to bump in to my daughter in laws stone plant pots when I had dropped the children off , I'm beginning to feel like a leper and have started to put some make up on my arm 😣
Mine do not look like bruises but more reddy purple spots in various sizes and sometimes they merge together. They seem to appear for no reason. I did not have dry skin before pred but my skin has got a lot drier since I have been on it. The purpura spots take about a fortnight to fade in my case. Smaller ones disappear faster than larger ones.
Hi i have these on my right arm,they look awful.Last week i bumped my arm and one of them started bleeding,going to Dr next week will mention to him.xx
They seem to be improving now that I am down to 7mgs but my arms do look as though I've done a few rounds with Mike Tyson,!!! I always carry plasters and steristrips with me too. It's just another pain in the neck that this gang have to put up with!!!😬
What fun this is! Not bragging but I'm on 2 other illness sites with health unlocked. I'm not one to moan, just get on with things and I'm active and try to keep busy 😣
Hi Kate yes I’m on other sights and I can’t believe I found this one about skin etc oh dear yes you think that you are the only one with the or one of a few with this problem then you find there are loads of other people do you laugh cry or what
Does this get any better
I have been told that I won’t walk again and that has taken a long time to come to turns with
I lost my husband 2years ago and that doesn’t help but I will get there and I know it sounds strange but it does help slightly to read that there is other people out there with same problem but I pray it won’t upset
Mine may be slightly better since initial dose, but it seems to come in splurges, sometimes very few spots and then other times big splodges. I am currently at 7mg.
My skin has become so thin that every time I bump into something, or my dog catches her paws on my legs or arms the skin just peels back and bleeds like mad. I seem to be covered in plasters or dressings depending on the size of the wound. That, hair loss and weight gain don’t do much for my morale.
Dogs which jump are not properly trained. But it is a terribly difficult habit to break. We had a couple of miniature poodles when I was growing up and they jumped up all the time. I would knock them down by raising my knee, which meant they were basically knocking themselves down! I don't know if your niece's dog is big enough for that technique to be effective? You certainly don't want to look like you're kicking it! Wear long pants and long sleeves when you visit. If you wear garden gloves when you first enter her home would your niece get the message? I can just see you going in, armoured!
I was diagnosed last December, and was put on 25mgs of Pred. Now tapered down to 15mgs. I've gained nearly 2 stone and I hate it. I try to eat properly but...! Still feeling very tired and like us all I think, I have had days and good. My GP is very nice, but really doesn't seem to know much about PMR!
I posted a request last week about this topic. However, my major concern was whether the 'thin skin' was reversible after weaning totally from prednisone. Lots of replies from bruise-sufferers, but not many anecdotes from zero-dose PMR folks.
Hi Kate just seen your post and yes I have exactly what you are saying
Bruising skin peeling so very easily on legs and arms getting scared now as on blood thinners and that doesn’t help I am going to read through your posts and see if there is any help there the only thing I can think of is bubble wrap
If I could upload photo of my leg well I don’t know what you would say I might be able to try later lol
Hi Rusty, I was on blood thinners, rivaroxaban, and they did not seem to make any difference to the purple blotches. Thinking about it I may even have had fewer purple blotches, but that may just have been my fuzzy brain.
I have been on Prednisone since March 2017 for GCA & PMR. Bruising came right away. But, the purple spots and skin tearing only came in the last 4 months. My Internist put my diagnosis as Cushing's Syndrome and Senile Purpura. There are alternate names for them, Solar purpura, Actinic purpura, or Bateman's purpura. As I'm 67, any name that says Senile is infuriating, when there are so many other choices.
I have seen huge areas on some patient's arms, who are on steroids in the hospital. The skin is like tissue paper & tears very easily.
For myself I have just brushed by something, such as when reaching in a closet, & started bleeding. That's when the purple splotch appears and tears at the same time. I use a Hydrocolloid dressings on them. Over the counter you can find them in Johnson & Johnson brands called "Hydro Seal". They have one for heel blisters & some under "Advanced Healing". Follow directions & they can stay on even more then 3 days. This protects the site & allows healing.
Harmon Drugs (a part of Bed, Bath & Beyond) has their own brand a little cheaper & not as strong in my opinion. But, if your going to change it the next day, cheaper maybe better.
Thank you so much for the information. I've taken my Grandsons blackberry picking today and now I have even more tears and bruises. We are going away to Krakow for 4 nights on Wednesday morning. Early and I'm working in the morning, so hope I can get some of the products you have told me about x
My OH who has reached the grand age of 80 has big red blotches whenever he is doing diy etc and hits himself on something. He is not on steroids or anything really so I think it goes with ageing and skin getting thinner. Its me with GCA and PMG and my three year journey has me still stuck on 7mg of pred along with a cocktail of other pills for the add ons that come with it. The current worry is the short sighted eyes which are getting worse yes due to steroids. I never thought that retirement would bring annual new dentures and specs instead of holidays. I tell my middle age children to save for all these wonders! However I can still see and visit places and do my NT volunteering with other oldies and have a laugh. See you again in a year when I might, just might, have got down to 6mg.
Oh no reading about bruises and skin peeling back I now come across eye problems I thought it was perhaps my age and I now find out it could be another complication of steroids when will it end and how long does it go on
Thanks for this sight I don’t feel so lonely sad having to have to say that but tonight’s that how I’m feeling
What about hearing has anybody heard of this one
Will we be any good to science no I don’t think so lol
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