Livedoid vasculopathy

Yes. They have done a dopplers on my feet. I have also had ultrasound from the groin to the foot. My feet are not swelling anymore since I have been treating for the diabetes. We believe it went undiagnosed for some time. My blood sugar levels were off the charts high and we are bringing them down slowly but not without their fun side effects. I am hoping the Xarelto will help in healing with both the LV and Diabetes. I don't believe the two are linked though. I just have the luck of bad genes in the family with Diabetes. It gets frustrating when I get treated and diagnosed with something it is lifelong.... Just once it would be nice to go the doctor and it be one and done. I know we all live with this disease and it definitely has its lows. I can't believe I didn't look for a support group before now. It just feels good to be able to share experiences and lift each other up in ways that probably nobody else can.

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

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?

I have an appointment with Rheumatology next week. I was recently tested for Lupus and the test was negative. However, I did get diagnosed with diabetes. *sigh* I am wondering if anyone else has diabetes with LV and how it has affected the healing process. I did started back on the Xarelto and it did seem to help heal the ulcers last time and I was in remission for over a year. Hoping I have that same luck now.

Thanks! This sounds like good advice, will ask Dr. to check blood flow in my lower leg next time I am in.

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

I live in New Zealand where medication and treatment is free with few exceptions. When the ulcers appeared I went to the District Nurse Clinic at the Hospital Outpatients everyday for debriding and dressing. Once the ulcers were under control I went every two days, and now I go every three days, so there is consistent attention and opinion each visit. I don't always see the same Nurse and a Senior Nurse often pops in to see the progress. Each visit we discuss "shall we change or continue" with what we're doing. The end goal is resolve all issues. I now have one ulcer left from the 2nd outbreak, caused by the attempted change to pentoxyfilene in November '19 from 300mg aspirin, but developed some dermatitis - prob/poss from having the leg covered for the last 14 months. For the first time I am using a steroid, Dermol 0.05% and it is working, to stop the skin breaking down.
I am currently using Acticoat Flex 3 on the ulcer which is a silver coated stretchy polyester that allows the passage of exudate. There is a time frame around using most products and I have also used Iodosorb, an iodine ointment, with great results too. I use Microdacyn wound care spray to clean the leg.
For side effects of medication and how to help with that, there's a really good book - Drug Muggers by Pharmacist Suzy Cohen. You can buy the e-book/kindle on Amazon for $7? This version you can search, far better than any index. It's a great book everyone who takes medication should have.
Hope you get some good nights sleep.

Thank you, Ruth. I agree that we are not a one size fits all group. I was diagnosed and treated at Mayo Clinic for the past decade before moving. I remember clearly that they said we all have different extremes and symptoms. I have neuropathy with mine and the medications for that make me extremely nauseated and dizzy. Pentoxyfilene gives me the worst headaches and I am fatigued all the time. It is hard to remember what normal was actually like. I did take Xarelto for a year and it was a godsend but it is so expensive even with insurance. I did not have any breakouts on Xarelto at all.

Thank you, Zenk. I had a neurologist who had his own cream that he used to give me and it was expensive but it was worth every penny. Now that I have moved out of state and am having to go through the gauntlet of finding a new doc for this, I'm having a breakout after a year of remission. The timing couldn't be worse but we do what we have to. I will bring in the recipe for your cream to my Primary Care Physician next week to see if this is something I can get. Thanks!

Andi,
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.