I’m new to this site & first must say how good it feels to hear from others with this crazy illness (LV) & know I’m not alone! I do have experience with cellcept, but should start by explaining my condition & how it was diagnosed.
About 5-6 yrs ago, my hands started to become very swollen & reddened. Around the same time, my feet started to turn a brownish/ reddish color & all my digits (fingers & toes) would turn purple when cold. I was initially diagnosed with Raynaud’s syndrome. A year or 2 later, I started having other symptoms (fatigue, joint pain, general malaise) & was referred to a rheumatologist, who diagnosed me with Cryofibrinogenemia after my blood work tested positive for it. Shortly after this diagnosis, I started to get these very painful reddened areas to the tops of my feet. I was referred to a hematologist in Indianapolis who started me on high dose prednisone.
About a month later, with the red patches getting worse & becoming more painful, my dermatologist took biopsies & they came back as venous insufficiency with some signs of the Cryofibrinogenemia. She also gave me a topical steroid cream to help with the pain & itching. After two days of using the cream, all my reddened areas opened up, including the biopsy sites. Most of the wounds were on the top of my left foot near my toes & one wound that tunneled in between my toes.
At this point, I was referred to the University of Chicago. The rheumatologist there started to wean the prednisone (it was doing much more harm than good) & started me on trental & cellcept. This was in June. By December of that same year (2014), my condition had continued to worsen, the ulcers weren’t healing & new reddened patches had started appearing on my other foot, as well. I also had other more generalized symptoms, such as, fatigue, muscle pain & weakness, joint stiffness & pain, dry eyes, pleurisy, & an occasional malar rash. My ANA always came back positive, but all of the more specific auto immune tests were normal. Still, my rheumatologist felt that I did indeed have some sort of autoimmune disorder that just hadnt revealed itself yet.
Since my condition was worsening, my hematologist in town referred me to the Mayo Clinc in Rochester. So in Jan 2015, I spent a week at the Mayo Clinic & I must say, had such a wonderful experience. The dermatologist there took more biopsies on my bil foot wounds & those both came back as LV. So my final diagnosis was LV caused by Cryofibrinogenemia secondary to an undiagnosed auto immune disorder. Unfortunately, the physicians I saw there had only seen cryofibrinogenemia one other time, so didn’t have much to base my treatment plan on. Their 1st recommendation was to try Therapeutic Plasma Exchange (TPE) or plasmapheresis. The wound care team there was amazing & after debriding my wounds, 5 daily treatments of ultrasonic mist therapy, & changing my wound care routine from hydrogel to santyl ointment, my wounds looked better than ever & were almost completely healed a few months later.
I started the TPE treatments when I returned home. I had to first have a permcath placed in my right subclavian vein to use for the treatments. I completed 2 months of every other day treatments with no change in my wounds, pain, or any other symptoms.
So, the next plan recommended by the physicians at the Mayo Clinic was Coumadin therapy. I was started on Coumadin in April of 2015, in addition to my other meds (trental, aspirin, norvasc, cellcept, medrol low dose for joint pain since I could no longer take ibuprofen, & pain meds as needed).
By last fall, my wounds were basically all healed except for a couple scabby areas that wound peel & re scab over & over again. I do believe the Cellcept was helping- with my wounds, as well as, other symptoms. However, my rheumatologist in chicago disagreed & felt that since I mainly had LV only now (my lab tests for the cryofibrinogenemia had been negative the last several times checked), that I only needed to be on blood thinners. However, two months after the cellcept was stopped, the LV has flared back up again & the scabby areas on the top of my left foot near my toes has opened back up again & is causing me incredible pain. In addition to my regular pain killers (which are barely even touching the pain,) my doctor prescribed a lidocaine ointment to help numb the area. This works great, but only lasts an hour or two.
I saw my rheumatologist last week when I first started noticing the wound opening up & she started me on plaquenil. But I guess it takes 2-3 months to even start working, so it’ll be awhile before I know if it helps.
Today, I saw wound therapy again for the first time since my wounds have opened back up & the physical therapist used a paste called Calazime, which is a zinc type paste similar to diaper rash paste. She applied it to the open wounds on my left foot & the scabby reddened healed areas on my right foot. The paste burned terribly when applied & even though she said it would go away after 5-10 mins, it was still burning terribly over an hour later. So, I soaked my feet in water to try to get it off (it’s a very thick paste), & went back to using Vaseline, which i find very soothing. However, after soaking long enough to get some of the paste off, I noticed that the healed wounds on my right foot had opened up now too- which explained why I was in so much pain from that foot as well.
I plan to call my rheumatologist in the morning & ask if I can possibly restart the cellcept as I do believe it was helping more than we realized. And I think the next recommendation made by the Drs at Mayo if the Coumadin didn’t work was IV immunoglobulins (IV IG), so I’ll have to check with them about that as well.
May I ask if Sany of you also have a deep, knawing, agonizingly painful itch in & around your wounds? If so, what treatments have you found that help? The only thing that helps me is oral Benadryl, but it makes me so tired & loopy & I have 2 small children to contend with,so need all the energy I can get!
Also, anyone else with foot ulcers have trouble finding shoes to wear? I’ve only been able to wear oversized crocs, but they cause pain to the bottom & sides of my feet from my foot sliding around so much in them. Also, any suggestions for walking aids?? I have so much pain in my feet all the time, but it is far worse when standing or walking. I was using crutches initially, but now that both feet are affected, they do me no good. Was thinking of maybe trying a cane??
One more question, besides narcotic or even non narcotic medication, what other types of treatments do you find that helps with the pain? The pain is really starting to affect my life. Cooking, cleaning, etc is nearly impossible without excruciating pain when standing.
Sorry for the long post & all the questions! I’ve never “talked” with anyone with similar problems to mine before & I have so much I want to ask!!