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Hughes Syndrome APS Forum

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lloydyuk profile image
19 Replies

Does anyone here have a diagnosis of petechiae or similar?

I received this today I've been aware of it slowly getting worse for a very long time however this recent warm weather combined with a weekend of balance exercises mostly standing had aggravated it. It's on both calves, ankles and parts of the feet.

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lloydyuk profile image
lloydyuk
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19 Replies
Lure2 profile image
Lure2

I have that on my lower legs. I have heard it is common with APS. It is not beautiful though.

Kerstin

lloydyuk profile image
lloydyuk in reply toLure2

It feels like the skin is thin and when stretched like it could tear sometimes, slight sting.

minnime63 profile image
minnime63

I think I have purpura on my feet and ankles. What with the varicose veins, I'm dreading summer! Need to find light coloured, opaque tights!

NaggingWife profile image
NaggingWife in reply tominnime63

Hi Minnime63 - I used to work as a Cosmetician in Canada, and the best thing for you would be to use the spray on tights (no I'm not joking there is such a thing). They will sell it at places like Boots, usually in the cosmetics section but you'll have to ask them to show you where it is. It's a product which is a bit like a flesh-coloured hairspray but slightly greasy in texture until it's dry. BEWARE - when you spray it, do so over newspaper and on a washable area as it is waterproof when dry so hard to clean off even bathtubs and tiles so would be a disaster on carpet. If you used this it would mask all your discolouration and would be a lot cooler and more comfortable than tights on a hot day. I have used it for special occasions when I've wanted silky even-coloured legs with no tights. Do be aware, however, that it will wear onto the inside of clothing, particularly if you don't let it dry fully before you get dressed! So avoid spraying it too far up your legs beneath skirt or shorts, or you'll end up with transfer onto your clothes which could stain them. Hope that helps! Good luck :)

minnime63 profile image
minnime63 in reply toNaggingWife

Hi NaggingWife (I'm sure you're not!). Thank you so much for your response. The strangest thing is that I saw this on M & S's site just this morning. I didn't think it would possibly work, but now I'm definitely going to try 😄 xxx

NaggingWife profile image
NaggingWife in reply tominnime63

Glad that I could help Minnime, and when you finally meet my long-suggering husband you'll know why I gave myself that screen name ;) If I didn't nag him into looking after his health he would be dead a dozen times over already, but hey, that's what wives are for right? Hope the spray tights work for you, and enjoy your summer!!! :)

minnime63 profile image
minnime63 in reply toNaggingWife

Lol! Will be trying it very soon! Thanks agakn x

Lure2 profile image
Lure2

It does not bother me at all. No sting. I have had it since I got my APS in 2002 but it has grown up on the lower limb. Perhaps 15 cm over the ancle. The doctors have observed it but no particular comment.

Perhaps you have got something that you should show to your Consultant.

Kerstin

lloydyuk profile image
lloydyuk in reply toLure2

I mentioned to my endocrinologist as pigmentation can be a side effect of Addison's disease which I have. I see my rheumatologist in July so I'll discuss then. Saw GP today who knows my history which is where I got the diagnosis. I have 2 photos but don't know how to post up!

MaryF profile image
MaryFAdministrator

Hi there, what you describe is not unusual, as you can see from the earlier replies... MaryF

Beartje profile image
Beartje

Hi, I developed petechiae during my pregnancy about a month or two before I got HELLP syndrome. I was tested LA positive after my pregnancy. In my case they are very very small however. They are on my chest, belly, and arms. I do not have the impression they are getting worse. Good luck with the spray.

viv112 profile image
viv112

Hi..my dermatology consultant prescribed below knee support stockings and I've got used to wearing them now.i feel the advantages outweigh the disadvantages. I can't tolerate any irritation from fabric on my calves and wearing a stocking means I can wear trousers and even soft denim. I only get the petechia rash on my calves occasionally now and it's usually when the weather is warm and last time it was after I did a long walk. It usually goes after a few days and I've been told it's nothing to worry about. Just another one of the joys of having APS!

lloydyuk profile image
lloydyuk in reply toviv112

Thank you, strangely I went to be measured for the same today. Dr commented they could make me hot in the warmer weather.....I asked him if I could get high heels to go with them on prescription...

thank you for the info....I am seeing my Rheumatologist next week...I have been

experiencing skin problems for the 1st time in my life....cheeks and nose get red(not itchy but warm) if I expose them to heat...ie really flared when I st under a dryer at the hairdresser......My lower legs...front "flare up"...inflammation( Seems to be UNDER THE SKIN) and itching if over heated.....

...tried cortisone cream and calamine lotion w/ benadryl in it....both worsened the

swelling..

.only cold packs and old fashioned calamine lotion (the kind I used when I had

chickpox as a child...and I am 67) reduce swelling and relief itching.

ANY ADVICE? fear the spray on makeup wil make things worse

CaliforniaGail profile image
CaliforniaGail

Happily, mine sporadically come and go.

Little pink dots... nothing compared to those big black bruises!

Now the age related freckles are getting numerous... my skin look like a multi colored leopard. Spray tanning helps, but expensive at $35 for about 3 weeks. I'll have to look into this spray you can buy yourself. Thanks!

mozelle profile image
mozelle

I haven't posted in about 6 months--I'm back.........:)

Due to a history of DVT in my leg, I wear compression stockings every day, but last April I sat in the sun for about 1/2 hour late afternoon, and exposed my legs to the sun for the first time in many years. The next morning I started developing a strange rash going from halfway down my thighs down to my ankles, and it was burning me. This was the exact area that got exposed to the sun. Went to my GP who immediately sent me to a dermatologist. He diagnosed it as PETECHIAL PIGMENTED PURPURA, and said it was a photo sensitive reaction to the sun and a medicine I was on, HCTZ (hydrochlorothiazide, a diuretic). Prescribed a cortisone cream, and Benadryl and said it would take a few days. Well, it is now one year, and it is there permanently. Goes from halfway down my thighs to my ankles. It gets worse when I take a shower--gets very red and itches. But the skin is smooth--it is not a raised rash, but it comes from under the skin. I've shown it to my internist, my dermatologist, my hematologist, my vascular doctor, my cardiologist, and my endocrinologist. Each one has a different theory. One says it is from the warfarin I take, one says it is not the warfarin, one says my skin got thin due to the one month on a very powerful cortisone cream, one says as you get older this happens, one says he does not know, and so forth. They took me off the HCTZ beginning of January, and I still have the rash.

I hope you don't go through the same thing I have and still going through it.

Mozelle

jetjetjet profile image
jetjetjet

I had it from ankles to neck and hot shower made it BLOOM -- went to ER and they said { hives } really - i re -searched and found Petechiae showed Rhemy and he agreed that is what it was -- but happy to say no more attacks since then 3 years ago !!

mozelle profile image
mozelle in reply tojetjetjet

What is Rhemy?

jetjetjet profile image
jetjetjet in reply tomozelle

Rheumatologist

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