I have had PMR now for 3 years and have reduced Prednisone to 5mg albeit with some stiffness. My concern is now with my skin. I am 75 and probably considered thin so not sure if it is just old age but my skin is now like tissue paper and every time I bump into something or open the skin I end up with an ugly mark. Rheumie says it's because of the steroids. Is this true or just old age?
Thinning skin: I have had PMR now for 3 years and... - PMRGCAuk
Thinning skin
The Rheumatologist is right Caloo650. Prednisalone contributes to skin thinning. Slather on the moisturiser and the sun protection. X
Hello, Caloo650. It probably won't be much consolation to know that you aren't alone with this. We've had a fair number of queries and comments on this issue which can be found in 'Related Posts': here's one to be going on with:
healthunlocked.com/pmrgcauk...
Thank you. I had trouble finding the related posts and have just read all the comments. In some ways it feels better to know others suffer from the same thing.Of course it doesn't help living in the Australian sun and it's hard to wear long pants and sleeves when it's hot as it is at present. I'll just have to display all my lumps and bumps under the sun screen☹️
I had a huge red bruise on my forearm a month or so ago and found that putting some makeup on it actually made it much less obvious. Body Shop foundation, but I bet there are other kinds of makeup much more concealing. As long as skin not broken you could give it a try.
When your own post's title includes the key words, as this one does, then the related posts appear! Seems like we'd want to read them before we post, but that is one of the idiosyncracies of this site. I'm told the search function has improved but I've never had any luck with it!
I envy you with the sunshine but understand the difficulty. We had an unusually hot summer here in the UK and considering I used to be something of a sun worshipper in my youth (can just about remember 😏) I now prefer to keep in the shade .
Slather, slather and slather!
Unfortunately I was also a sun worshipper, never a good thing out here where the UV index higher
Of course and there must be many situations in a hot country like yours where the sun can't easily be avoided.
When we're young we often think we're infallible and also there wasn't as much information provided about the harm the sun's rays can do. If only we knew then what we know now has never been more apt 😏.
I have found it has recovered quite a bit at much lower doses of pred - I had been at mid-teens doses but am now at 7mg.
Just terrified of bumping into things with sharp corners not made easier since a downsize into an apartment
I bought corner protectors and fitted them on every cupboard and on of the corners on the table.
I also use and still do, Double Base Gel.
I got a really bad cut just changing the bed covers. I caught my arm on the mattress seam.
Pro - so good to hear you are as low as 7mgs! Ever been that low before?
I did get down to 5mg, even 4mg for a while, some years ago but then had a full blown flare, not just from overshooting. I wasn't this tired then mind!!!!
Sounds a lot like where I am right now. I got down to two and a half and boy did I have a flare! I'm back on 8 and probably going to stay here for a while as things are still not good. I'm guessing all the grief & ensuing stress hasn't helped. I haven't had PMR (only 6 years) half as long as you though.
The tiredness passes Pro.
Yeah - when?
Well you're the expert, but it seemed to get better at 4mgs. Down to 1mg and the fatigue kicked in again, but not in the same way, just tire more easily, not the continuous weight of fatigue that got me from 7mgs. Adrenals? I don't know.
Not the expert on TCZ! Whole new world this
Well I'm in newish territory now because I have been on it for almost 3 years. No studies done on GCA and TCZ beyond 12 months, I believe. 🤞 I don't grow another head or start howling at the moon. 😱
I think there are follow-up studies - that would be normal.
medically.roche.com/content...
arthritis-research.biomedce...
academic.oup.com/rheumatolo...
Well these trials don't look at side effects of long term use, ie more than 3 years. The first 2 are 12 month trials, the other looks at 3 year use of tcz and its effect on gca. There hasn't been a study on side effects. Hopefully it's safe for long term use for gca 😵💫🤯
Well you would hope so, it's been used long term for Rheumatoid Arthritis, so any major issues would have surfaced by now..
ncbi.nlm.nih.gov/pmc/articl...
pubmed.ncbi.nlm.nih.gov/310...
are a couple of studies on ,long term observations in RA - there won't be any yet for GCA, it hasn't been used for long enough
Adrenals, may well be....they do take some time to get back to normal...anything up to a years even after coming off Pred...
Could be worth asking for a cortisol test - if you haven't already - can't recall.
I never have. Seeing her at the end of January so I will ask for that. Thank you.
Worth getting checked then,,doesn’t prove they are working okay , just that they are capable of doing so…but it’s a start.
Rheumy correct……very common - and probably not helped by age nor the climate. Just keep skin as hydrated as much as possible - sure there are plenty of moisturisers/creams available in Oz.
Hi Caloo650,
Just to add to all the good advice so far....I too experienced a slight change in skin health at higher doses of pred. I always use a simple, unperfumed body wash and always moisturise with a good moisturiser for sensitive skin. I feel sure that without this daily routine, my skin would have deteriorated much further than it did and now I'm on lower doses of pred, my skin definitely looks and feels a lot healthier again.
I don't use soap in the shower at all except to wash my hair. My shins were the worst and I had a couple of really outstanding scrapes last year, one needed 4 stitches - but since the pred has gone down, so has the bruising and I think it was that that made that skin particularly delicate
Sounds like it was really painful. Pleased things improved for you though.
I wash with Derma 500...I'm not sure exactly what it is but it doesn't lather up very much (hard water maybe?) but seems to nourish my skin.
Funnily enough it DIDN'T hurt at all. I only realised I'd done it when I saw some blood! I was in the hospital at the rheumy at the time and he sent me off to A&E - where I was in and out in 3/4 hour. That was purely due to it being surgery and there aren't many cases for them but one on duty. So proper surgeon sewed it up ...
Thanks that's good news. I also have a good moisturiser but haven't been using it daily. I will from now on. Everything helps.
It's just as important to nourish and take care of your skin as it is to nourish and take care of yourself with the food you eat. Dry, scaly, chapped skin will be far more prone to damage than well nourished and moisturised skin.
Drinking plenty of water and a healthy, nutritious diet will also help.
I'm good at all important aspects except at moisturizing regularly. Following these posts I've taken myself to task and today bought a really good moisturiser. I wanted something with a touch of retinol in it but the pharmacist said my skin was too fragile
I would agree with her. You want something that's really gentle and natural and doesn't contain lots of preservatives, perfumes or other unnecessary additives. Look for body moisturisers that are for sensitive skins. I'm sure your pharmacist will have advised you further on this.
As the others say it is very common. I only have to scratch or knock my legs and I have blood pouring down them.
Piglette...I had a strange thing happen. I scratched my leg and I had blood spurting....my bathroom looked like a crime scene. No matter what I did it would not stop. I used up a roll of paper towels. Blood coagulation in my shoes and I had to toss them. Finally after battling I called 911 and they took me to the ER. They put stuff on it to stop the bleeding. I didn't think I needed the ER but the stuff they used was great. I kept telling them I was not on blood thinners.....I did mention the pred. Anyway...my legs have really changed on pred. If I bump or scratch they bleed really bad. My left lower leg is kind of darker.....and my ankles get huge.
The other thing is I developed this skin infection. Not a rash. A collection of 5 round sores I guess you would call them. I saw my primary care doc who.gave me an antibiotic and a cream as well. He didn't know exactly what they are. They don't hurt or itch. They seem to be improving a smidge. But after feeling pretty good for a couple of days finally, that has gone out the window. My pain and stiffness are off the charts again. Do you consider this a sickness? Do I go up on the pred some? I have to get my labs done for the Actemra but I am waiting a bit because of this infection and the meds. I just can't seem to stay in a good place for more than a few days. Makes no sense to me.
Take care.
I suppose we just have to learn to live with it.
Yup...any advice on the last part? If not I appreciate you reading it. Thanks.
Have you completed the course of abx? If so, and infection not improved then you need to speak to doctor again..if he doesn't know what it is then he needs to investigate it further...no good just saying "don't know what it is"
As for pains & stiffness - sounds like a flare - this link contains usual advice for dealing with one - just adjust example to your own current dose -
healthunlocked.com/pmrgcauk...
Thank you DorsetLady. No, not done with meds yet. Few days left. I should try to find a derm. I thought maybe others had this here....
I am do frustrated because I am at 23.5 and it's turned already. I had one really good day....didn't do anything, didn't want to suffer the wrath of PMRpro...said with smile. I was careful and the next day I felt SO bad. Don't get it. Thought maybe the new med for my skin....or? Anyway for the first time I have been allowed to stay on my dose and saw improvement so I am disheartened. Thanks for the link. Will check it out.
Take care...
"the wrath of PMRpro"... oh definitely not a sight to behold..😲😂🤣...
give the abx meds time to work..and then if no better, chase up. But if you put a picture I'm sure someone will recognise what it/they are, even if you doctor didn't.
I really did think.of her that morning...just because you feel great don't do a lot!!! I actually learned that lesson years ago with my other stuff but she is right. It has come up in our conversations a bit. Lol. I am afraid to put a pic it's kinda gross....need more coffee to decide. Lol. Thanks.....
Well put up a government health warning with it ! 😳
Ok....here it is. This is what they look like at the beginning.....anybody have any ideas on what this is?? Doc no go But gave me oral and cream antibioticsIf you have any ideas of what this is pls. let me know. Thanks. Sorry it's kinda gross.......
Think your doctor needs to send you to a dermatologist for a start .
I am 80. I’ve had the experience of just ripping my skin accidentally with a fingernail. A surgeon, who was helping me manage significant gashes, suggested A - a vitamin depleted by pred. I’ve taken it daily for almost a year and I don’t rip my skin anymore; I still bruise but not so terribly.
that’s interesting, Katenjaninaz. But I guess we’re all different in how we react to lotions and potions. But I’ll certainly look into the Vitamin A. Thanks
Apparently we should be careful with A supplements. Can't remember why but we are advised to get it mostly through food.
Just looked it up. Potential for liver damage, especially when also taking meds that can affect the liver.
mayoclinic.org/drugs-supple....
oh my, HeronNS, we just can’t win, can we. just enjoy life is my motto
And it is fat soluble so it builds up in the body and the excess isn't got rid of like B and C vits.
Heron, my labs are good. However, I had a portion of my small intestine removed 10 years ago b/c of strangulated hernia. This affects nutrient absorption. I found the supplements recommended by the Prednisone Pharmacist did help me. I didn’t take the supplements she sells- just most of the nutrients affected by prednisone especially B complex( mood) Mg and K. Once I get to a lower dose of pred I’ll consider, reducing/ phasing out certain supplements.
On prednisone since 2015/ now on O2 24/7 for scoliotic restrictive lung disease / asthma/ deconditioning.
so called "senile purpura" is genetic, environmental (previous UVL exposure), and corticosteroid related. A trifecta!!
Your rheumy is correct. My skin is paper thin and I have been off sterouds for awhile. I have tried all types of lotions. My skin is fragile and has not rebounded
It doesn’t return to pre steroid state, but it is less troublesome than whilst on them..of course, age is a factor as well!!!!
I was about to ask if skin thickened up again, as one lowers the dose, but obviously not (seemed slightly hopeful, I guess) but at least there's some light at end of this never-ending tunnel!
😃
It does improve, but a few years have passed and they aren’t always as kind as they could be to skin…or anything else🤔…..
Sadly I understand you
slap on the Nivea everyday on arms and legs helps....less spontaneous bruising at lower doses and the nose bleeds stopped.! I have found skin less likely to tear at lower doses (been on 3 mg for a few months). Things do improve...eventually. It is my daily mantra!
Having trouble getting below 5mg. I am slowly dropping to 4.75 in the hope that my body won't recognise the reduction
Ingredients in regenerative creams and lotions to look for with proven efficacy are alpha hydroxy scids snd retinol.
retinol should be used with great care..it can cause irritation etc.
I swear by body butter - which works fine for me, but I am wondering if I should look for something with collagen in it?
there is a lot of discussion about whether collagen on the surface of yooour skin is incorporated into the collagen below...it seems very unlikely. Collagen is something the body builds for itself. It won't just grab some that is lying around and integrate it. Save your money. Body butter sounds lovely.
hi Caloo650. I posted a similar topic a couple of weeks ago.
I have just turned 70 and, like you, so easily catch myself on something and it either bruises or cuts immediately (sometimes both). I never used to be like this and put it down to reaching 70, but from all the responses I got on here it seems it’s a common side effect of the steroids.
My arms seem to have gone more “crepey” but I don’t know whether that’s associated. My dear old mum (who was 98 when she passed away) didn’t seem to get “crepe-iness” until much later in life.
I’m slowly tapering down from 5mg to 4.5.
you’re not alone Caloo650.
I'm the same age as you and have been on prednisolone for almost 3 years and have noticed a dramatic change in my skin. I think it's fair to say my arms and legs have acquired a lot of scars over the last year from bumps and knocks that would have left me unscathed before I started the steroid, although age must also be playing a part.
Hi Caloo650.
The ageing process does cause thinning of the skin, due to lack of fatty tissue under it. However, I have been on steroids for 4 years and even the slightest knock or tap results in bruising under the skin. I feel awful in the summer and have to wear long sleeves and trousers! Keep your skin moisturised with E45 cream or spray.
Take care. from Jenny
I get that too although it's gotten much better on 5mg. I did have rather a large bruise on my arm appear last week.
I can’t swim either, davidcantswim🤣
Just a quick but hopefully helpful reply. I am on a high dose of Pred for 14 months. My skin is also tissue thin consequently when bumping into things and damage the skin I bleed. As I am on Warfarin and Clopidogrel the cuts do not heal at all quickly. The cardiologist suggested that 1000 mg should help to plump up the skin. So I have been on it for about 3 weeks with fingers crossed.
Can you tell me what you are on at 1,000 mg pls?
I have purple splotches everywhere, don’t even know I get one until they pop up out of seemingly nowhere. My same-age friends who are not on pred have what I would say is normal age related skin that looks nothing like mine. You can see every teensy little vein. My gp doesn’t think my skin will rebound if and when I ever get off pred.
Twopies, can I just ask if your veins became more prominent, particularly in your arms, when taking Pred ? I have noticed that for some time and been worrying about it. I convinced myself that they were having to work harder and thought that can't be a good sign.
yes…but not all the time though, no idea why. I, like you, figure it can’t be a good sign. They seem to come and go. When I first got pmr and mentioned the prominent veins to my doctor, he said thinning skin and combo of old age 😋.
Thanks for getting back to me. There is no doubt that veins in my arms stand out more since taking Pred. I know we can't blame everything on the drug but the differences I've noticed with certain things since starting Pred, like crepy skin hair thinning etc are not in my imagination!
And I know my friends mean well and try to allay my fears by saying that they have similar problems and it's all part of the ageing process, but I know what I know! They are not on steroids so dont REALLY understand, I guess. Am most grateful to 'meet' so many helpful people on this forum.
I have friends with very serious autoimmune diseases, I look far worse (skin, hair, muscle loss) than all of them. They aren’t on pred, I am. And no, they don’t understand, you’re right.
Great advice so far.As a sufferer of EDS which causes similar thinning of the skin and easy bruising , plus slow wound healing because of the way both EDS and steroid use effects collagen production I can say that taking Collagen won't help. Research has shown little to no difference to skin with collagen supplement use but improvement is made by improving dietary sources of protein and vitamins E, A, K , C and D and Magnesium , zinc and selenium.
Increasing consumption of B 12 and Folates helps to metabolise the proteins and fat soluble vitamins the skin and eyes need from food so adding these to your diet is also important.
Lean animal proteins , eggs , dairy products (including lactofree) , oily fish , bananas , Avacado , olive oil , probiotic live yoghurt , nuts and nut butters , beans and pulses , mushrooms , green leafy vegetables and a variety of vegetables and fruit including citrus and berries can all help improve skin by making the nutrients available to the body to help better skin production.
Manuka or local sourced honey each day also produces improvement of skin and reduces skin reactions . It is used both internally and sometimes during would healing topically in dermatology.
Animal based collagen foods are better for improving skin and connective tissue than vegetable based ones.
Unfortunately, fixing skin issues can mean you need to have a vegetarian diet at the least , not a vegan one.
Both active Vitamin A and collagen used to produce the collagen and essential oils in the skin and eyes by the body is only converted efficiently at the level the body requires from its equivalent animal sources. It is not an issue in a healthy person not taking drugs which can effect collagen but is an issue and can cause a need to change the diet for people with skin conditions or on steroids.
A daily combined vitamin and mineral supplement taken after your fattiest meal of the day can help improve nutrient levels you need in case the steroid use also effects your digestion and vitamin absorption.
The inclusion of a vitamin D , K2 and Magnesium spray , taken at the same time as an Omega 3 capsule preferably after food and some form of vitamin C drink is also useful.
Get your Vitamin B 12 , Folates , Ferritin Panel , Vitamin D and Electrolytes checked with blood tests at the GP.
If you are low in B12 or Folates a separate supplement for these should be taken with food containing no vitamin C and plenty of water.
Hydration is vital. You need to drink the recommended amount of fluids each day even if you are not thirsty , and more in hot weather. Checking your electrolyte is important to make sure your sodium level is not too high but also making sure whether the electrolytes are low , sometimes more drinking or sweating in the heat may mean a person needs an electrolyte drink too.
You can use African black soap for skin and hair , I get bars from Amazon called Dudu Osun it lathers well , unisex with a mild citrus smell from the natural ingredients, and cheap , about 1.50 a bar , it is recommended for use by people with eczema and psoriasis. It removes the dead skin cells and leaves the skin feeling very soft.
Or use Epaderm 2 in 1 skin lotion to wash in the shower . Epaderm 2 in 1 can also be used to remove make up.
Epaderm was given to me by the hospital at first with my skin issues .
It sinks in better than things like E45 , and many people don't suit E45 or get issues with it .
A cream called Akilwinter is a godsend , great on feet , and reduces outbreaks of Raynaud's , chilblains and athlete's foot. I use some on my toes and feet everyday in winter and if I am out and about in summer.
Put on your body moisturizer after a shower and at night, and in the morning . Allow it to dry then add a good 50+ sun lotion .
In hot climates keep out of the sun in the hottest times of the day when you might feel too hot to wear a cover up , between 11-2.30. When you are out do wear a cover up of loose clothing with natural fibres. Thin kaftans , maxi dresses or kaftan and kimono shirts and a hat. Spray cool water on a scarf to tie around your neck to keep cool and replenish when it gets hot. Sit under a parasol or use a sun umbrella when you walk about.
Moisturize your face , ears hands and feet well and replenish sun cream on exposed skin regularly. Thin or already fragile skin can be more prone to heat rashes , contact dermatitis and skin cancer.
Use a spray bottle of water that you cool in the fridge and take out in the day to dampen scarves , hat rims , face mist or cool down feet , ankles and hands when on the go.
Reduce use of makeup or if you don't feel good without it try just tinted BBcream instead of foundation or powder , a little gentle concealer, and any eye products made from natural ingredients which are cream based and not powdered.
If you can use it with your medications , Arnica cream is good for speeding up bruise healing .
A foot tub or bowl containing warm water with Epsom salts , a few drops of lavender oil , olive oil and a teaspoon of witch hazel can improve battered , bruised or grazed feet or hands.
Brulidene is a good fast acting antiseptic for various types of cuts , burns and rashes.
Still wear good quality footwear , even when swimming in the sea, or on the beach , and little cotton socks to reduce feet and ankles getting knocked it damaged. Ankle boots and flexible swim boots can give better protection . Use gauntlets and a long sleeve light shirt when doing outdoor work to prevent scratches and grazes even if it is hot. Always use gloves for work and put on a good unisex hand cream , vaseline or Epaderm before you start to reduce blisters and chaffing.
Try little soft summer gloves , wristlets , armlets , or accessorize with tied colourful scarfs around the wrist and lower arm , as well as looking cool it protects the skin on arms that is commonly knocked. Slow down in new surroundings so you don't accidentally bump into things that you aren't used to being in your way.
If you get a wound put on which ever ointment you need and allow it to dry completely giving it some time in the air . Plasters are useless , get varied sizes of wound covers like Techaderm ( used over surgery sites) if a bigger wound needs cover for a few days. They are waterproof, breathable , don't come off in the shower and can keep wounds superdry. Vaseline smeared over a spot , rash , blister or healing wound also protects them from knocks and stops water penetrating them and opening them in the shower or when swimming. A cushion of gauze and micro tape can be used between toes or over scrapes and wounds that can be rubbed but need regular exposure to air.
Don't forget your eyelids . If your eyes also get dry use a warm damp compress. try eye drops in the middle of the day or a Vitamin A gel like Hylo night to replenish eyelid oils at night.
Sorry! But I vote for the prednisone. I am experiencing the same thing while on 3mgs daily.
Thank you
I've been taking Pred since 2018 (currently at 5mg) and I find my skin (arms particularly) bruise ridiculously easily.
Regular application of cream containing Collagen seems to help at lot.
Good luck
Hi! I hope my experience is informative. I'm 60 and have had eczema since birth. I've been prescribed strong steroid creams to control it for decades, especially on my hands in recent years. Lots of handwashing and sun exposure makes the hands very susceptible. The skin on my hands has been thinning noticeably for about 5 years. I've always believed this was likely to happen, eventually. It accelerated when I started taking oral prednisolone for PMR (and all but stopped using the cream) 3 years ago. The slightest knock to the backs of my hands now causes a large red bruise that takes a couple of weeks to fade. By then, I often have a new bruise to replace the one that's just healing! I now have a brown stain on my right hand where I have bruised very frequently. I presume this is iron deposits (rust!) from the old blood under the skin. When I recently tapered off the prednisolone to 7mg, the eczema flared up on my left hand, so I've had to start using the cream again. I'd like to try some steroid-sparing drugs, but my rheumatologists aren't interested.
Thank you for your kind remarks; but the relief brought by the steroid cream far outweighs the side effects. The same goes for the tablets: I'd rather be strong enough to enjoy a couple more good years than spend 20 years weak as a lamb. Good luck with finding your own balance.