Leg Discoloration: Hi Everyone I hope... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Leg Discoloration

hihannula profile image
15 Replies

Hi Everyone

I hope someone has a name for this.

I’ve had this discoloration on both lower legs for 17 years now. That’s when I started Warfarin. Coincidence, I’m not sure... Even though I had been diagnosed with lupus 35 years ago, after a stroke, 2nd miscarriage etc...my APS was not diagnosed until I moved to another city 18 years ago. My new rheumatologist did a full history and blood panel, I was then diagnosed with APS which they were certain I had at the time of my SLE diagnosis but was not caught. So, after starting warfarin which dramatically reduced the APS symptoms especially the frequencies of multiple TIA’s I was having the entire 18 years undiagnosed.

Anyway after all of that, this may seem trivial but, the dark color on the legs started in a very small area only on left leg and has spread very large over the many years to both legs. Some days extremely painful to touch and other days no pain at all. Also on some days the pattern changes to a lacy lighter hue. Nevertheless, it would be nice to know what may be the cause. My Hematologist, rheumatologist, APS Doctor and my G.P. all say they are not sure what it is. If anyone has lower limbs that look like this and know what it is, I’d love to hear from you. I take warfarin, prednisone and plaquenal. I have APS, SLE, PH, Perhiperal Neropathy and CAD Thank you for any input.

Holly

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15 Replies
MaryF profile image
MaryFAdministrator

HI, the first thing that spring to mind is vitamin B12 deficiency, sometimes this is missed, often people have low Folate at the same time. can you ask your consultant or GP to do some in detail testing? Please do not supplement before testing as it can alter the result. I hope you get some answers. ncbi.nlm.nih.gov/pmc/articl... It would also be good to rule out anything to do with Addisons Disease which can also cause discolouration like this.

Mary F

hihannula profile image
hihannula in reply toMaryF

Thankyou for replying Mary. I had my B12 test done on Sept 11th,2018 and it was high at 716. The normal range is 138-652. I read that it could be high because of liver disease. I’m going to GP On Tuesday to see what the next move is. I’ve looked on line for similar photos but found nothing. Thank you for responding Mary

Cheers. Holly

MaryF profile image
MaryFAdministrator in reply tohihannula

At least you are keeping a photographic record it will help in the end with whatever it is. Did they tell you what your Folate level was as sometimes that can be indicative. MaryF

hihannula profile image
hihannula in reply toMaryF

No Mary, the battery of tests did not have a folate or getting readings. Also my D3 is 1/2 of what it should be and my morning and afternoon cortisol levels are very low as well. Especially the 4 pm test. At that time of day I can barely move from exhaustion. The thyroid test has a high reading as well indicating hypothyroid disease. I had these tests done in Sept 2018 and still have not heard from the Dr to come in for an appointment to discuss the results and what plan of action to follow. They always say “No news is good news” I’m now at a point of such exhaustion I decided I’ll make the appointment and see about a referral to an endrconolagist. I also did some reading yesterday and not only is a high B12 reading possibly indicating liver disease, but also some form of leukaemia. I won’t worry until I get some testing done. Thankyou for your reply and I’ll be sure to get the ferritin and folate tests done as well. Cheers

Holly

MaryF profile image
MaryFAdministrator in reply tohihannula

Hello, do join Thyroid UK on this platform, their charity is excellent as is their forum, I had to order my own tests, private tests to get a few decent readings to help me. A close friend of mine has Vitiligo and Hyperpigmentation, It turned out she had low stomach acid and Pernicious Anaemia, it is all now beginning to even out her skin tone. She has had six loading doses of B12 (injected) and is taking B complex and Folate. Don't start anything before re testing, or checking with your GP, as it could mask the true results.

I am not saying it is this but do carry on looking into it, to rule it in or out. and certainly Pernicious Anaemia is indicated with Peripheral Neuropathy. I hope you get some help soon. My friend does not have Hughes Syndrome/APS or currently a Thyroid problem, but just the above. Also the Pernicious Anaemia Forum on here is good on here also. I also enclose the forum for Lupus UK in case you are not already on that.

healthunlocked.com/thyroiduk

healthunlocked.com/pasoc

healthunlocked.com/lupusuk

MaryF

Wittycjt profile image
Wittycjt in reply tohihannula

First thing that came to my mind was liver disease then I saw the response you wrote...how are your liver enzymes now? Best of intentions...

hihannula profile image
hihannula in reply toWittycjt

Thank you for replying Wittycjt. I have never had a liver enzyme test done. I’ll be sure when I see my Dr on Thursday to mention I’d like that done as well as the folate and Ferrin tests. I’ll keep you posted. Cheers

Holly

Wittycjt profile image
Wittycjt in reply tohihannula

So what did doc say?

hihannula profile image
hihannula in reply toWittycjt

My hematologist has no idea. So I'm going to a licensed dermatologist nest Thursday. I'm sure she see all kinds of stuff so I'm hoping she knows and can do something about it. Thank you for asking. Hope your day is going well.

KellyInTexas profile image
KellyInTexasAdministrator

Absolutely no clue...I havent tied in with you in a while. So there’s my 2 cents worth. Don’t spend it all in one place ! But at least it gave me an opportunity to say hello...

hihannula profile image
hihannula in reply toKellyInTexas

Hello to you too Kelly.

KellyInTexas profile image
KellyInTexasAdministrator

Hello,

I think I have an idea worth looking into regarding your leg.

“ Felty’s Syndrome.”

Please google this and see what you think. I stumbled across this today and immediately thought of you.

Happy Easter !

hihannula profile image
hihannula in reply toKellyInTexas

Happy Belated Easter to you as well. Thank you for thinking of me. I did read the article on Feltys Syndrome. The only symptom I have is dark spots on my legs, so I’m pretty confident I don’t have this. I went to a dermatologist last week to have a trial laser treatment on a small section on both of my legs. I’ll know in 6 weeks if the lazer worked when the redness and bruising fades. The dermatologist is pretty sure the discolouration is from the plaquinal medication. Coincidently the brown spots started to appear shortly after starting the medication. Anyway there may be hope to get rid of it but if not it certainly isn’t the end of the world I’ve been living with my legs this way for so long.

Have a good one day Kelly 😁Cheers

Holly.

yazzo95 profile image
yazzo95 in reply tohihannula

Hi, just wondering if the laser ended up working for you and whether you found out what was causing the discolouration? I’m going through the same thing right now. Thank you!

in reply tohihannula

Hi, was also wondering if those dark areas were determine to be due to the medication? I also started having them after starting in the medication.

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