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Posts (54)

Fri, Nov 15 12:59am · Autoimmune mystery in Autoimmune Diseases

I think the upcoming tests will come up with something. Please keep us informed. Zenk

Wed, Oct 23 9:02pm · Livedoid vasculopathy in Skin Health

Hi Shiela, So sorry about your experience at wound care. What are you doing for treatment going forward? Keep in touch. Zenk

Fri, Oct 11 5:50pm · Sjogrens in Autoimmune Diseases

I see a eye doctor that specializes in corneal issues. He has helped me with my dry eyes
.Have you tried plugs in your tear ducts ? They really helped me. Zenk

Fri, Oct 11 5:44pm · Livedoid vasculopathy in Skin Health

Hi Shiela, I look at the LV posts when they happen too. Still chronic but taking Xarelto daily with the hope of preventing new ulcers. Zenk

Wed, Oct 2 4:37pm · Livedoid vasculopathy in Skin Health

Hi Tngbell, , I am glad your husband got a diagnosis after so much suffering. Getting a diagnosis is a great start because now you can concentrate on what works for this illness. Hyperbaric therapy would definitely help get oxygen to his wounds and help to heal them. If he could enroll in a trial or any way he could get HBO would help. I have medicare too so I know they do not pay for LV wounds. I take Xarelto 15 mg. per day to treat my LV. Blood thinning seems to be an important part of treating LV. Any way we can get oxygen to the blocked tiny vessels is key. Does he take blood thinners? Keep going to a wound center to be on the lookout for infection. I am able to get Mepelex bandages prescribed by the wound center to apply to the wounds. They stay in place and don't hurt to remove. They are life savers for me especially when wounds are over my ankle bones. They are foam padded and great. Does he have topical pain killer? Ask the wound center about it . I have used it over the years. Keep in touch, Zenk

Mon, Sep 30 4:52pm · Livedoid vasculopathy in Skin Health

Hi Tngbell, Yes the LV site is active. Tell us about your experience with LV . Zenk

Sun, Sep 22 11:32pm · Livedoid vasculopathy group: Checking in, how are you doing? in Skin Health

Hi Curtis, So glad you are doing better . Do you take Xarelto to prevent new ulcers? I had three ulcers over the last 10 years that were as deep as you describe yours. My plastic surgeon did skin grafts on them all which allowed the wounds to heal. LV is a chronic disease as you know, so it sounds like you have found a good team to help you. Zenk

Fri, Sep 20 11:43pm · Sjogrens in Autoimmune Diseases

Hi bees, I have experienced muscle weakness over the last few months. I have sjogrens . I do not have any Rheum markers. Wonder if anyone here with Sjogrens has experienced muscle fatique or abnormal nerve conductions studies with their Sjogrens. Thanks Zenk