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Livedoid vasculopathy

Blood Cancers & Disorders | Last Active: Nov 3, 2023 | Replies (247)

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@swing1929

Pain relief is the biggest obstacle in my opinion... I have tried everything to no avail.

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Replies to "Pain relief is the biggest obstacle in my opinion... I have tried everything to no avail."

Hello @swing1929!Can you please tell us all the therapies you have tried;

Compound cream at Mayo, with ketamine that insurance wont cover due to FDA rules. On xarelto for 3 yrs, we have found the drier the ulcers stay the faster they heal, so right now I am using lavender oil straight with neosporin for infection. No insurance until next month, tylenol isnt touching the pain anymore. I dont know what else to do.

Are you currently using xarelto or has your doctor stopped it;Did it have any effect on healing and pain;

I am currently taking it. 10mg a day. Havent really noticed a difference in either pain ir healing.

I agree with you about keeping the ulcers drier. I have been changing dressing twice a day on my ankle ulcer. I have to watch if I drive for very long or stand in one place talking to someone. I will have to pick raspberries sitting on a stool this summer. I get tiny blood clots in capillaries in the ulcer and that make the ulcer worse if I don't move about or keep my feet elevated. When I get a micro clot the ulcer is really painful until the clot pops or is resorbed. I take 2 regular aspirin a day for blood thinning, have had warfarin but it didn't affect ulcer.
2 aspirin dull pain for about 2 hrs., Aleve dulls pain for about 4-5 hrs and Tylenol doesn't do much. The Aleve is the best of the lot for pain relief. When pain gets bad I try to concentrate on something else until the pain moderates. I watch tv, read, or think about something else and try not to move my ankle. Any pressure on the ankle from covers, blankets or movement tends to aggravate the pain. I rarely sleep more than 3 hrs at a time due to the pain, but have gotten pretty good at putting up with or ignoring it. The new coloring books for adults also are a good way to direct my mind into non pain channels.

My LV appears to be caused by capillaries that get bulges or aneurisms in them that leak plasma and rupture. I saw the same type of bulges and aneurisms in electron micrographs that I took of the membranes around the sperm bundles of a hybrid moth. The damage to the membranes was so severe that it rendered the moths sterile because the sperm fell out of the bundles before they got to where they were supposed to go. In 3 dimensional micrographs the damage was spectacular. I bet my capillaries would look about the same damage wise!
prairie smoke

Hello @swing1929,has your doctor tried 15mg or 20 mg xarelto per day;I started with 10 mg and finally I got to 20mg per day!

I work as a cashier at Walmart, so i keep my feet up as much as i can, wished i could take something for the pain. I get that part too well. I spend most days watching tv with my feet up on my 9" wedge. Love it!

I do the same thing watching tv. I just leave my job this ulcers are giving me lots of pain and want be able to work.

Same same!!! I eat percocet like its candy sometimes. Dr gave me gabapentin for the nerve pain i now get