Mayo Clinic Connect
Looking for people with the rare blood clot and leg and foot ulcer disease of Livedoid Vasculopathy. Mayo seems to be experienced at treating this disease so I thought I would find you here, I have it.
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Pain relief is the biggest obstacle in my opinion… I have tried everything to no avail.
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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!
Liked by Kanaaz Pereira, Connect Moderator
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!
Liked by srusti
Hello, something I do for the pain is ice packs. It’s not a long term relieve but it helps. Sometimes I feel like getting in the bathtub full of ice, but ice packs help with the pain from LV and Fibro.
Liked by Kanaaz Pereira, Connect Moderator, srusti
Thanks dear i will try it. right now i am on homeopathy medicine i have tried allopathic treatment for 4 years but result is only temporary relief. So this time i am changing to homeopathi Dr tell me its work slowly but effectively and without any side effects. So i hope it’s work
Liked by gtalan
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.
Being new to LV I have a simple question. I have an ulcer on my ankle for about 7 months now. It seems to be finally closing but around it the skin is all red and bumpy and around that it is so-o itchy. I do use Santyl on the ulcer and have tried honey around it and sometimes cortisone 10. Does anyone with more experience have any other suggestions? Thank you.
The webpage for Santyl ointment (http://www.santyl.com) mentions, “Occasional slight temporary redness has been noted in surrounding tissue when applied outside the bone.”
I’m also tagging @aimeenc @prairiesmoke @spence @grandmaabby @zenk @mlemieux @marlene64 @gonefishinmt to see if they have any thoughts about ankle ulcer and wound care.
I wouldn't dare use cortisone 10 anywhere near my ulcer. it is in a strong enough dosage to irritate the skin and it will thin the skin with repeated use. When the skin thins the ulcer is more likely to enlarge as it breaks down the fragile skin. I was on a week cortisone compound for months but my skin thinned and ulcer got bigger. the doctor warned me about the thinning. I read the whole list of ingredients on anything I put on my skin before I buy anything and I look at the chemical structures of the ingredients. I react to things and it may take hours or days for the reaction to show. And I keep a list of preparations, medicines that I react to. Cortizone is a double edged sword,,,,, just depends on which edge you are dealing with.
Liked by Martin (Founder ClotsMatter.ca)
Hi @linde,courage!!!Has your doctor tried some other form of therapy,for example blood thinners,like Xarelto;Of course these medications if prescribed to you by your doctor should be given only in close cooperation with him!
Thank you for your responses. I only use Santyl sparingly right on the ulcer and change twice a day. Because of the thinning I also only use the cortizone when so itchy I need help. I take a full dose aspirin and anagrelide to reduce platelets. I am not sure how Xarelto exactly works to help. One of my Dr’s has mentioned it.
Hi @linde,Xarelto in simple words is a thrombosis inhibitor.As far as I know it doesn’t reduce platelets.Your doctors know better than me and will surely do the best for you!Be in touch!!
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