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Posts (59)

Mon, Aug 31 7:13pm · Hypereosinophilic syndrome in Blood Cancers & Disorders

Does anyone have hyper eosinophilla ? Is a bone marrow biopsy necessary for further treatment?

Tue, Feb 25 5:13pm · Livedoid vasculopathy in Blood Cancers & Disorders

Computer problems today. Andi, so glad you could get back on Xarelto.

Tue, Feb 25 5:10pm · Livedoid vasculopathy in Blood Cancers & Disorders

Hi Andi, Glad you are continuing to look for the underlying reasons for LV. I know diabetes can impede healing due to blood vessel sclerosis. If your diabetes can be controlled, perhaps you may see an improvement in the blood flow to your ulcers and help slow development of new ulcers.
I don't know of any connection between diabetes and LV. my docs always are doing a doppler test on my feet to check for blood flow problems. Have you had a doppler?

Tue, Feb 18 6:14pm · Livedoid vasculopathy in Blood Cancers & Disorders

Hi Andi and all, Just got out of thehospital where I had a cadaver graft placed over the very deep and painful ulcer on the lateral rt. ankle and around the back of my ankle where the achillies tendon is. I am finally able to put pressure on the foot to walk in a flat bottom surgical shoe. Thought I would tell you all this because, when my ulcers get extremely out of control the services of a plastic surgeon has been very valuable to me. Also just before the graft procedure, the wound center people noticed that my pulses on the right leg and foot were not good at all. I had a Angiogram with 2 stents placed in the right leg to open the arterial blood flow to that leg. Going forward I should have much better healing in that leg and foot. Just to say, have your pulses checked ,or even a doppler test done on your lower extremities just to be safe.
Would love to hear what others know about autoimmune problems and how they may be related to LV. Do any of you see a Rheumatologist? Take care, Zenk

Wed, Feb 12 3:41pm · Livedoid vasculopathy in Blood Cancers & Disorders

A topical pain reliever has been a great help to me over the past 10 years for my painful ulcers. I have used a prescription compound in cream form. The prescription includes 10% ketamine, 10% gabapentin, 5% baclofen, 5% diclofenac, 3% lidocaine, and 2% lipoderm. This cream medication requires a prescription and must be obtained through a compounding pharmacy. This prescription was not covered by my insurance. I paid $90.00. Alternatively, you could get a prescription for Lidocaine Hydrochloride Jelly USP 2%. I much prefer the compounded prescription. I have been able to use it several times a day for a number of years as needed. It has been a great help and really takes the edge off the pain for a few hours. You don't have to worry about using it too much. My wound center doctor writes this prescription for me. Your primary care doc could probably write it too.

Nov 15, 2019 · Autoimmune mystery in Autoimmune Diseases

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

Oct 23, 2019 · Livedoid vasculopathy in Blood Cancers & Disorders

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

Oct 11, 2019 · Sjogren’s Syndrome – Introduce yourself and meet others 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