Wildflower

[hollyirene]

Good Morning from Brockville Ontario,Canada. I am new to the group and reading your letters has answered so many of my unexplained symptoms except for this one problem I have. I'd like to know if anyone else has dark, discolouration on their lower legs and extremely tender to the touch. Both of my lower legs are affected. They are unsightly and painful. I'm not sure if it's the APS itself or the combination of the warfarin, prednisone and plaquinal, or if it's a circulation problem due to heart disease which I have as well. My Dr's are perplexed at this discolouration. I hope to hear from someone. Thank you and have a wonderful day!

[MaryF Administrator]

You are not the only person on this forum to have this, type of cardio vascular reaction. The first thing, apart from welcome, is do you have a Hughes Syndrome/APS Specialist, if not please show your GP our charity website, which has some medical consultants that they will find useful. ghic.world/

Sometimes the discolouration is made worse by bad circulation and also Post Thrombotic Syndrome. bmj.com/content/suppl/2011/...

MaryF

[hihannula in reply to MaryF]

Thank you Mary for replying. Good to know this is not something rare or unexplainable. I will be seeing a APS specialist for the first time in July. I'm hoping he will answer a lot of questions I have. With having heart disease, Lupus, APS and symptoms from the medications, I'm not sure what's what.

I love this site. Have a great day!

[Wittycjt in reply to hihannula]

Are you hollyirene too?Cindy

[Wittycjt in reply to Wittycjt]

I guess we’ll never know...very weird.

[ndstephens49]

I also had a huge purple discoloration of left leg. 20 years ago. Mine was due to vasculitis that ruptured under skin. Took months to resolve.

In addition my feet can turn bright red almost like I have Sox on. Doesn’t last very long. I figured it was due to clotting/circulation issues.

Good luck.

Nancy in West Virginia

[hihannula in reply to ndstephens49]

Hi ndstephens49. Thank you for your reply. It makes sense that it could be ruptures because some days the color changes to darker or the area gets larger. It really is painful and I hope my new APS doctor will be able to help.

Have a wonderful day!

[nyctapdancer]

I believe this could be a symptom of APS. I have never taken prednisone because I don't like the side effects. I have primary APS and have had blood clots in my lungs and a DVT in my ankle. The ankle remained swollen and tender for a year or more, but eventually returned to normal. I cannot imagine why you would be taking TWO blood thinners.

If you haven't seen an APS specialist - and I think that should be a hemotologist who specializes in clotting disorders and NOT a rheumatologist. In my experience, all rheumies want to give out prednisone.

[hihannula]

Hi nyctapdancer. Thankyou for your reply. I will be going to an APS specialist in July for the 1st time in 35 years. I'm hoping he can explain a lot of what is happening and hopefully have some suggestions on how to keep things under control. I am taking only the one blood thinner, warfarin and the prednisone and plaque also for my SLE. These drugs are brutal. So many side effects!!

Have a wonderful day.

[Kerlampert]

Aloha from Hawaii!

Yes, discoloration of the legs indicates vasculitus.....and poor circulation. ..possible clotting disorder...

I like to swim, walk, bike and do leg exercises for it.

Kerstin

[hihannula in reply to Kerlampert]

Hi Kerstin. I have a circulation booster for my feet. I use it minimum 1x’s p/d. I have it placed under my desk so when I’m on the computer I set it for 30 mins. I just love the way it stimulates as far up to the knees! I’ll find out more when I see the APS Dr in July. I hope he doesn’t tell me I can’t use my booster. Cheers to you!😁