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Thu, Feb 13 4:29pm · Livedoid vasculopathy in Blood Cancers & Disorders

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.

Wed, Feb 12 3:30pm · Livedoid vasculopathy in Blood Cancers & Disorders

TOPICAL – i use EMLA cream (before debriding) which takes about an hour to work and lasts 1-3 hours. Not a nights worth of sleep but it may help you get to sleep. I find that raising my legs hurts when I'm sitting or lying down, whereas sitting with my leg normally doesn't hurt, and with it raised about 4" -6" when sitting is OK too. Lying down flat suits me best. Lidocaine is also an option but not as strong as Emla
PAIN KILLERS – I take 2x 500mg paracetamol and 30 mg codeine. I have also taken another paracetamol or panadeine straight after the debriding – about an hour and half after taking the above. We are not one size fits all and I'm tall and not skinny so feel comfortable taking more than someone who is short and small.
Ruth in NZ

Sun, Jan 19 10:26am · Cancerous spot not healing?? in Cancer

Any of you looked at using bloodroot. There used to be a Facebook page with 21,000 members and great info, which FB removed. Now see https://mewe.com/group/5b84a9610b7676241e25c6d8. Lots of knowledgable people there who have used it successfully. I have.

Nov 1, 2019 · Livedoid vasculopathy in Blood Cancers & Disorders

I use Microdacyn 60 Wound Care spray to clean the ulcerated area. I use it in a spray bottle and refill it from the 1 litre bottle I bought onlline http://www.biologiq.nl/UserFiles/Flyer-OculusMicrodacyn-JAN%202014.pdf

Oct 30, 2019 · Livedoid vasculopathy in Blood Cancers & Disorders

Hi Sheila, There is a product called EMLA – comes as a tube of cream – to use when you clean the ulcer out. Should be available OTC or to order from your local pharmacy. Put some on and cover it with cling film or OPSITE FLEXIFIX (Smith and Nephew) for at least an hour before you debride/clean out. It numbs the area and will wear off after two hours or so, so will start to hurt about then. I also take Paracetamol/codeine about 1.5 hours before a debriding session.
Another numbing cream which is less powerful is Lidocaine, used in the same way. I also use compression stocking to hold the pads in place, rather than plasters. The skin is so fragile.

Sep 30, 2019 · Livedoid vasculopathy in Blood Cancers & Disorders

I had to change back to Aspirin within a day. The Xarelto made my nose bleed

Sep 21, 2019 · Livedoid vasculopathy group: Checking in, how are you doing? in Skin Health

Hi Curtis, I suddenly got lots of red lumps I thought were mossie bites in January. Then they turned black and into holes that got bigger. At first I treated them with Medical honey then realised it was totally out of control so I went to the Dr within 2 weeks of it starting. In New Zealand we have a District Nurse scheme where the DN will come to your home if you can't get to the Outpatient Clinic at the Hospital. As I was mobile and able to drive I went to the clinic everyday for a month where they debrided and dressed the holes, using lidocain to numb the holes, and then I changed to using Emla which is a stronger numbing cream. So I'd clean what I could at home and put the emla on so that by the time I got to the DN Clinic it was an hour later and they could debride them properly. Within 2 weeks I had an apt with Dermatology who did the biopsy. 9 blood tests and xx swabs plus the biopsy – decided LV. The Dermatologist had seen one other case in Australia and recognised what was going on. So I've had monthly checkups with the dermatologist and daily trips to the DN in Jan/Feb, then the DN every two days in Mar/Apr and since end of April every three days.
The pain at night was unbearable with raised legs. The DN suggested keeping legs level. She said legs with artery problem shouldn't be raised – causes the pain. Legs with vein issues need to be raised. So maybe get a second opinion about raised legs. LV is a platelet problem. From what I understand the platelet shell hardens which prevents them from passing each other in the blood, so they clump together and thrombose to the skin surface and create mayhem !! as we know.
I googled and found this Mayo group and another called Team Inspire –
https://www.inspire.com/search/?group_id=200136&sec=all&query=livedoid+vasculopathy and read every email there was to get some ideas and find what other people were doing.
As I said to Zenk, I've also changed my diet and don't eat foods that people can be allergic to.
Good luck with your walking. We have to try and find what works for us, everyone is different.

Sep 21, 2019 · Livedoid vasculopathy group: Checking in, how are you doing? in Skin Health

Curtis, I had a ulcer on the top of the arch of my left foot. That's where they did the biopsy. It healed then came back, and has now healed for some time BUT it often hurts and is sensitive and I can feel it down to the end of my big toe, like a tightened rod. I worry that it's going to return as a hole. 🙁 I only had one on each foot, others were on the lower legs. The other ulcers I had to start with have healed. So glad you didn't have your foot cut off and that you are walking correctly again.