Steroid purpura~ not to worry

[Grammy80]

I took it upon myself to see a hematologist. The only thing I can't deal with is the unknown. These blotches, large and small, are constantly on my legs and arms in places where I knew it wasn't a bruise; all kinds of shapes and sizes. They stay for at least three days and then appear in other spaces. The new primary care doctor wanted me to see a vascular surgeon. My rheumy strongly advised against it...I was uncomfortable myself. So, she is history.

I made the appointment just to be reassured because I had mycosis fungoides in my forties...Oh, so long ago! THE GOOD NEWS...long term steroid use can cause the above because of a breakdown in the collagen. Along with the spots, I have indentations in some smooth areas. Just passing it on in case anybody else has this concern. Pretty ..NO, Harmless...YES. Good thing I have no beauty contests scheduled.💕💕

[Hunter134]

Good to know.I love your spunk and attitude.Hope all is well with your son 💖

[Grammy80 in reply to Hunter134]

Thank you Hunter....he's having a bit of a rough time...but healing. 💕

[Hunter134 in reply to Grammy80]

I can imagine how painful the surgery was.Healing even slowly us going in the right direction.Hugs to you both!!!

[SheffieldJane]

Whew! Well done for facing it head on. 💖

[Grammy80 in reply to SheffieldJane]

The only way to get 'stuff' out of my head....is get an answer....then I put it to rest.💞 I have this big box under my bed.....in it goes!!xo

[SheffieldJane in reply to Grammy80]

Wisdom! 💖

[Grammy80 in reply to SheffieldJane]

I love this forum for many reasons, but any wisdom I have comes from the journey we all are on. Especially from those who have been such warriors for many years!! 💕

[MrsNails]

Oh Grammy - Big Hugs 🤗 🌸 😘

[piglette]

I have had purpura too, particularly on my arms and even my hands. I tell people I have been gardening and removing brambles! It is incredible how they suddenly appear. They then slowly fade away.

[Grammy80 in reply to piglette]

😀👍I'm just totally committed to 3/4 sleeves now!!!💞

[piglette in reply to Grammy80]

So am I!

[calicojoy41]

I DO HAVE THE SAME THING ON MY ARMS AND LEGS! ALSO THE SMOOTH AREAS AND ONE STARTED TO LEAK CLEAR FLUID SO I HAD TO HAVE A COMPRESSION BANDAGE ON IT. ALWAYS SOMETHING NEW!!! IT IS KEEPING US ON OUR TOES IN OUR OLD AGE.

[Grammy80 in reply to calicojoy41]

Oh! It is just a comfort knowing...it is all part of the game. My rheumy always investigates...but says...we have to focus on the eye and the prednisone, once the plate is clear the other issues will still be there. I used to get those leaks too, now, not so much....but I make sure I elevate my legs on and off throughout the day.💕💕Keep the faith!!!

[123-go]

Grammy, you are an inspiration to us all! 💐

[Poshdog]

Thank you for posting that. I have similar smaller episodes, one to two at a time. First doc thought Bowens disease, second thought excema, neither prescribed potions worked. I decided on cider vinegar with 'the mother', and guess what - they went away - co-incidence? Xx ps cider vinegar aroma does not quite have the same allure as Dior! Xx

[PMRpro Ambassador in reply to Poshdog]

Drinking it or topically?

[Poshdog in reply to PMRpro]

Topically - I drink other things 🍷🍷🍷

[PMRpro Ambassador in reply to Poshdog]

Me too - never heard of it being used topically though. Interesting!

[Poshdog in reply to PMRpro]

Apparently has to have 'the mother' - the cloudy bits - but just dab it on morning and evening, takes a few days which is why coincidence came to mind, but is quicker with than without! 🙃

[Bennijax in reply to Poshdog]

How did you use the ACV? Applied to the skin, or in a drink?

[Poshdog in reply to Bennijax]

Soaked a piece of cotton wool and dabbed it on morning and evening. As I say it maybe co-incidence - would hate everyone shouting at me if it doesn't work for them!!

[Bennijax in reply to Poshdog]

It can work on skin patches of keratinosis, I think that’s the name for oblong areas on legs mainly, ones that look dry and rough. I too am getting the purple blotchy patches and will try the ACV. Nothing to lose. Does smell a bit, though.! Parfume de ACV

[Grammy80 in reply to Poshdog]

.....all depends on what you are trying to catch~! Salad anyone?💞

[Poshdog in reply to Grammy80]

At my age I would be lucky to catch anything (illnesses excepting)! 😘

[Constance13]

Wow! Trust you Grammy to outdo us all. 😂 We all have these dam… things but yours really are excessive. I was annoyed with just a few of those ‘beauties’.

[Grammy80 in reply to Constance13]

That is why I pursued it with the hematologist. This morning the outer part my left arm is a red blob, with spots up to the shoulder....from sleeping on it is guess? It will pass in a few....💕🤷not worrying...

[Mazxstitch]

A few of these appeared on my arm about 3 days ago. Delighted to see and hear your explanation.

[Pixix]

Hugs, S x

[Griggser]

Thanks for posting this as I have been getting these blotches on my neck/upper chest.

[Grammy80 in reply to Griggser]

I was hoping I could save some folks some concern.....💕

[Nextoneplease]

Oh Grammy, well done for tackling this 💐xx

I’m interested in the ‘breakdown of the collagen’ explanation - anyone think that’s also why my skin is ageing/ wrinkling at a rate of knots lately??

[PMRpro Ambassador in reply to Nextoneplease]

It is part of aging - and pred speeds up the tissue aging process ,,,

[Grammy80 in reply to PMRpro]

🤣😀😱You mean I'm not done yet?💕

[PMRpro Ambassador in reply to Grammy80]

[Nextoneplease in reply to PMRpro]

Well it’s certainly doing that in my case 🤷‍♀️

[Umufu]

Thank you Grammy, good sport, as always. Been there, and many other things. I call it Free Tattoo of the aged. And without the pain. My very best wishes to you. xx

[Grammy80 in reply to Umufu]

Free tatoo~!! I think I'll put a smiley face on some of the old ones!!💞

[Kayaksal]

I am adding collagen powder to my drink once a day... I too get these but so far only one or two at a time! I wonder if that might help you out. I also want to say that I admire your ability to keep on no matter what faces you! 🥰

[Grammy80 in reply to Kayaksal]

Wow....thanks Kayaksai!!! I've already taken up half the bathroom vanity so I'll just add collagen to it......the Amazon Queen ordered it!!💞

[BarachoisBay]

Glad you got it sorted! Take care.

[Louisa1840]

Thanks for bringing up this topic Grammy - poor you! Having seen yours, I will never complain about my arm purpura again. I was interested in the cider vinegar (with the "mother") applied topically though. That's surely worth a try?

[Grammy80 in reply to Louisa1840]

Not to worry, that is the good part. The spots usually find another location in about three days...some stain the skin and those 'will be mine'! I'm going to pass on the vinegar...I would be so covered I'd smell like a tossed salad. I did order some Collagen powder though~!💕💕

[PMRpro Ambassador in reply to Grammy80]

In the UK maybe a poke of chips (a bag of fries ...)

[Grammy80 in reply to PMRpro]

😆I'm learning the King's English, thanks!

[Louisa1840]

I rather liked the idea of you getting a tatoo on the permanent ones! What design would you favour do you think?

[Grammy80 in reply to Louisa1840]

😂😀🤣 I'm torn between 'inking' my wild youth....or more sedate senior years!! I think I'll just keep my memories on the inside...no need to memorialize anything in permanent ink~!💕

[VeeWat]

how did you cure mycosis fungoides?

[Grammy80 in reply to VeeWat]

I had it 40+ years ago and went to Northwestern Hospital in Chicago..dermatology. If I remember correctly they treated me with cream/ointment and follow-up visits. I cannot recall the medication.💕

[VeeWat in reply to Grammy80]

Thanks. My husband has an appointment there in February. Did you get light treatments?

[Grammy80 in reply to VeeWat]

No, no light treatment. As I dropped my pred I had fewer spots....except for some that stained under the skin like tattoo. No beauty contests any day soon, so I'm good.💞

[Grammy80 in reply to VeeWat]

Hi...my earlier response was regarding the pupura....Yes, I did have light treatments for the mycosis fungoides...you jogged my memory. I remember laying on the table for those treatments. Great facility with terrific doctors.💞

[VeeWat]

thank you

So that MF has totally resolved for you?

[Grammy80 in reply to VeeWat]

Yes...and I hope your husband gets the same result. It was so long ago, I can't recall how long I was treated. It was a crazy time also...single mom, two boys and three jobs! 💞💞