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zenk (@zenk)

Treatment options for Livedoid Vasculopathy (LV)

Skin Health | Last Active: Jan 23 12:08pm | Replies (65)

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Hi @gonefishinmt ,

Here in Canada, we don’t have CellCept offered here (not in my area anyways), but it’s another “immunosuppressive agent” type of drug which is very similar to “Prednisone”, which “Prednisone” is often used to help with flare-ups with Vasculitis patients, NOT LV patients. They are VERY similar conditions, but actually have opposite effects and medications.

My doctors put me on Prednisone for almost 2-years not realizing that I did not have Vasculitis, but the opposite LV. And I will tell you that Prednisone and other type drugs are NOT to be meddled with, I literally felt major changes inside, not related to my legs. Sleep was all but NULL and even my family members noticed a major difference in my personality.

If anyone ever recommended a similar drug again, it would have to mean that I have no options left in life in order to get me to ever take this medication again. Please do your research and once you have all the facts, then pursue taking this medication under strict supervision. Remember, these class of drugs make you more susceptible to other infections and usually have to be on a strict regiment.

Before you go spending money you may not have on a drug you don’t need… find communities concerning “Vasculitis” patients to see if they have been prescribed your CellCept.

Good luck with everything, stay positive 🙂

Martin R. Lemieux

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Replies to "Hi @gonefishinmt , Here in Canada, we don't have CellCept offered here (not in my area..."

I have had coumadin (warfarin, ie. rat poison) twice for blood clots and
also the injectable blood thinner that is given for clots in the lung.
Neither seemed to affect the formation of the LV ulcers. The aspirin I take
doesn’t seem to do anything for the ulcer, but the incidence of blood clots
had gone way down. I have factor V Leyden, which makes me a good candidate
for clots and also for LV.

My father was on prednisone for a short time to try to reduce a lung
inflamation. His personality went from that of a stoic Sweed to that of a
wild Irishman. The inflamation also got worse. We finally had a lung biopsy
done and he had Mycobacterium avei (bird TB). The prednisone did nothing
for the infection but make it worse.

I have had prednisone creams, and eye drops for allergies. Benadryl works
better on topical allergies than prednisone, and the eye drops precipitated
local retinal detachment. I read all ingredients and look at chemical
structures on all medicines, creams, topicals that I take. Doctors keep
thinking that I must be diabetic because of the LV ulcer, and they try to
apply bandages, and compresses like duoderm, xeroform, etc that may work
for diabetic ulcers but only serve to aggravate an LV ulcer. Drs are well
meaning but LV is rare so we get treated for problems other than LV, and
the treatments often damage our ulcers to the point that they become
increasingly difficult to manage.


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