Dosage and skin damage

[Singingkit]

It would be really helpful if folk were able to put up the dosage that they are on when communicating, I try to assess what is happening with so many awful side effects.I have been on prednisolone for several years and got down to 4mg last January when having a hip replacement. At the moment I am on 9mg and don't know if folk class that as low ,average or high ,I have lost a huge amount of hair. Really awful marks on my arms and legs,my skin is so thin it just tares desperate to get off them but worried about going to quick . Grateful for any advice.

[DorsetLady PMRGCAuk volunteer]

Ouch that looks sore……reminds me of an incident when I was on a similar dose to you, but had been on much higher doses for GCA.

Been off Pred for over 6 years now, but still get an occasional tear….

my take on daily doses as follows -

Anything below 7.5mg is low

Between 7.5mg to 25mg is medium dose

25- 60mg high dose

60mg and above, very high dose

Plenty of arm/legs fabric protection out there online - this is just one link-

limbkeepers.co.uk/products/...

Can I ask why you had to increase your Pred….or had you been advised to drop to a lower dose for your replacement? Nothing in your bio/profile to help….

[Singingkit in reply to DorsetLady]

Hip replacement could not be done until I got down to 5mg,it was difficult at some point to distinguish the pain from hip replacement opp and PMR so Dr advised going back up to 15mg and start reducing again, and so it goes on, I have tried to fool myself by reducing in half mg, but I'm still on 9mg with lots of discomfort.

[DorsetLady PMRGCAuk volunteer in reply to Singingkit]

Oh dear, that’s not good, do you think the discomfort is from PMR, or is any from your operation - hopefully not…

..and what exacted do you mean by discomfort? Bit difficult to explain sometimes I know.

[123-go]

You poor thing! Have a look here for some more helpful advice and suggestions:

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

I think 9mg would be classed as low/moderate. It certainly isn't high. This spring I was on 19mg for PMR after repeated flares.

I did develop scrapes similar to that but never as bad even in the upper teens. I did manage to cut my shin just above my ankle , just by crossing my legs and catching the sole of my winter boots and cutting a biggish flap which required stitches in the ED. It healed OK but is still visible. The surgeon commented on "the very thin skin". However, in the 2 years since I've not done anything like it again and now my skin is much less fragile having got down to 7mg in the last few months.

[PMRpro Ambassador in reply to PMRpro]

Forgot to say - I am absolutely convinced that the relatively decent state of my skin is to do with the fact I NEVER use soap products! Use soap and it strips out all the natural lubrication of the skin and dry skin is delicate skin. However good a moisturiser you use, it isn't the same.

[MiniSpec in reply to PMRpro]

If ever we meet, make sure to remind me to stand up wind of you.

[PMRpro Ambassador in reply to MiniSpec]

I am assured I do not smell ... Not using soap does result in a much healthier skin microbiome!

[Macas in reply to PMRpro]

I agree I don’t use soap as my skin is very dry . So far no bruising or sore spots thankfully.

[piglette]

I seem to still have problems even at 5mg. My skin is very thin particularly on my legs. I just have to scratch them and they bleed. In fact they seem to bleed even when I don’t seem to have touched them! I have been prescribed Cetraben.

[2013mayo in reply to piglette]

me too, my legs look horrendous, as you say, it can happen just sitting down doing nothing and I get these large blood spots, I can’t wear a skirt any more as my legs look so bad and I’m even getting them on my arms.

Let’s hope we all get better soon.

[piglette in reply to 2013mayo]

I get blood spots on my arms that makes me look like I have been in a fight with a wild animal. I say I have been pruning the roses!!

[Bridge31]

I’m the same as piglette. Three and a half years in I’ve been on 5mg for several months now but I still severely damage my shins at the slightest knock.

There are sleeve protectors that are very useful in winter. I wear them on my arms and my legs. The grandchildren are careful now but the same can’t be said for their 18month old puppy 🤣

[piglette in reply to Bridge31]

My sheets can look like the Mafia have been around sometimes!

[Wallysma in reply to piglette]

No horse head though...right? That would have nothing to do with your dose......😆

[piglette in reply to Wallysma]

Perhaps it is the horse head that is leaving the bloody marks!

[Wallysma in reply to piglette]

Naaaaaaayyyyyy. 🐴

😆

[piglette in reply to Wallysma]

🐴🐴🐴🦄🦄🦄

[Wallysma in reply to piglette]

Very nice.......

[Nightingales]

oh, you poor thing. The dermatologist who I was seeing for a different reason recommended Cetroben. My GP prescribes it and it does seem to help. Plus constant moisturising and not showering as often.

[Hirondelle]

I do so sympathise, I have the same problem, the latest being this haematoma from touching the edge of the sofa. I have had to go to the surgery 5 times in the last 6 months to have open wounds dressed, but no help given as to what to do, so reading all these replies is yet again so helpful. I have seen a dermatologist but all she said was very fragile skin and to keep out of the sun, which I always do anyway. Have been on 3mg of Pred now for 6 months so I don’t understand why my bleeding and bruises are getting worse.

HAEMATOMA ON MY LEG

[DorsetLady PMRGCAuk volunteer in reply to Hirondelle]

Not necessarily the dose you are on now, and are you on other meds that could be affecting skin -see from profile you list other medical issues.

Did your dermatologist not recommend other solutions than keep out of sun? Emollients or dressings etc?

Could also be age related…

[Hirondelle in reply to DorsetLady]

Thank you DorsetLady, Ah yes, I forget I’m old ..and yes, I take Clopidogrel blood thinner so that doesn’t help. The dermatologist told me to use Eucerin, which feels good but costs an enormous amount..but nothing else. I think I am going to look for shin protectors but not very tight ones.

[DorsetLady PMRGCAuk volunteer in reply to Hirondelle]

Blood thinners obviously won't help.. and you're not old.. just experienced 😊

[Hirondelle in reply to DorsetLady]

I think I forget sometimes that I’m old because I’m still working - painter -which helps!

[Karenjaninaz in reply to Hirondelle]

I wear knee socks in cold weather.

[montebello]

I'm on 50 mg PRED. and my skin rips if breeze hits it. I'm also bruised wherever I brush against something. So I'm very, very careful these days. Long sleeve shirts, long pants, gloves when I'm working.... best wishes

[Hirondelle in reply to montebello]

Thank you Montebello - I too wear clothes that could protect me - but my friend’s dog jumping up to say hello as I arrived, oh dear…

[Bridge31 in reply to Hirondelle]

The link Dorset Lady gave at the beginning of this thread is the answer for the winter. I wear similar but on my legs so your feet are still free of bulky socks. My shins look like that if I don’t protect them and have looked like that several times in the past. As I said I have been on 5mg for several months now and I don’t take any blood thinners. I’m 76 shortly .

[moonieboy9358]

Well dosages and incidences of side effects are going to be different from person to person. It is highly individualized. Also, one person might require a higher dosage or can get by with a lower dosage to control symptoms. Unfortunately, there isnt a magical number.

[irishponies]

Hello, I saw the photo and wondered how you took a photo of me without me knowing! I had that EXACT same injury: tears, bruises, same arm, etc. just several months ago! It happened during check-in at the neurologists' reception desk, I scratched a MILD itch on my left forearm with my right hand. Suddenly blood is pouring down my arm. It is definitely one way to stop a busy doctors' office... They bandaged me up but, it bled through those bandages while I was sitting in the waiting room for my appointment. They had to re-do their fine work. I also have Schamberg Disease so capillaries in the skin burst like fireworks "just because" they can. It thought the skin tears were a good reason to "burst". What a mess. Between the tears and the Schamberg's capillary fireworks I looked like a torture victim for the weeks it took to heal. I am sorry I cannot offer much except to commiserate. Yes, I am on Prednisone 5mg, down from 20 for over a year. Yes, the dermatologist said I have very fragile skin and need to come off of the Prednisone. No sun unless wearing sunblock 4000 head to toe but I am a red haired, very fair skinned person so I have always used sunblock. Like PMRpro I do not use soap EVER and moisturize at least 6 times a day, especially my face, knees, and hands. My dermatologist prescribed a skin cream that is $20 an ounce so I use Eucerin and/or whatever high-end samples he sneaks to me. Every night I slather Vaseline on my hands, put on moisturizing gloves and sit for an hour. Miss one night and ugh... (Full disclosure: I also have systemic sclerosis scleroderma.) Take care of yourself. Oh, that hurts!

[Hirondelle in reply to irishponies]

thank you irishponies. And your story is like a mirror to mine - the embarrassment of the sudden explosion of blood, of dear. I wonder if I have Schamberg disease as I often feel a small acute pain and lo and behold!a sudden subcutaneous bleed from a vein. I’ll look it up. I too have very fair skin and never sit in the sun now. I haven’t been putting the eucerin on more than once a day but maybe I should. Very helpful. Best wishes

[irishponies in reply to Hirondelle]

Hi Hirondelle, Schamberg's disease does not cause any pain, there is no warning sensation nor any post-capillary explosion sensation. While similar capillary issues are caused by medication, Schamberg's is a bonus stand-alone disease! Once the initial blood from the burst capillary is absorbed, however fast or slow your body re-absorbs the leaked blood, the iron is left behind, deposited in the dermis. The medical field has termed them "cayenne pepper spots" as the skin lesions start a red-purple and then fade to orange-red-brown color due to hemosiderin (iron) deposit. Because I am red haired, very fair skinned, the deposits are RED-orange. In the light, they are very red. People notice them and ignorant ones will say "What is wrong with you?" Typically, Schamberg's spots, progressive pigmented purpuric dermatoses, appear on the lower leg. My little devils go to mid-thigh, my back, my neck, and both hands and arms are fully covered. The spots, sized from a dime to several inches by several inches across, can be any shape they want and are never confused with freckles due to their shape and color. They are unmistakably RED. The iron deposit does eventually dissolve but it takes 3 to 5 years per spot to do so. Because I wake up with fresh spots, head to toe, most mornings, they replace any older spots. A dermatologist makes the diagnosis with a black-light exam (the spots GLOW red) and deep tissue biopsies of "fresh" burst capillaries. I have also been examined by a hematological oncologist who offered the same treatment the dermatologists did, "Learn to live with them". Meanwhile, we keep going!

[irishponies in reply to Hirondelle]

Oh, I highly recommend multiple moisturizing sessions a day! I have Eucerin on the side table near the recliner that I watch TV/read in so that it is handy, more in the bathroom, some in the nightstand, and some in my handbag. Moisturizing will become a habit and you'll definitely feel better. I suggest buying one JUMBO bottle for cost effectiveness and put it in smaller ones for convenience.

[Hirwaen]

Just to add to all that has been said, I recommend that when you have tears, like the ones shown, that you wash and then carefully pull the skin flaps back over the raw area. You may need to use steristrip sutures to keep large ones in place. This will help healing and also prevent some of the scaring although not all!! Then cover the wound and keep dry. I have been using this method for the almost6 years of PMR and even though I am now on 4 mgs the damage is much the same. Good luck🙂

[irishponies in reply to Hirwaen]

Yes, this technique works well.