DATE: March 24, 2011 Participants: Ed Becker: PAN Support Director / Moderator Rochelle Ray: Director of Cryoglobulimia Vasculitis Organization Bernie: PAN Group Member Peter: PAN Group Member Dr. Start off with some backstory and tell us about yourself, where you live, family. Eric Hoy: Immunologist Online Resources: Cryoglobulinemia: Cryoglobulinemia Facebook Page: _____________________________________________________________________________ Ed Moderator: There she is.... Peter: Hello Rochelle Ed Moderator: Welcome to our chat Rochelle Rochelle: Hello, Dr. I think I read from a prior chat that you are an immunologist? I do recall that it has been shown that postpartum can be possible trigger Dr. Eric: I think they are different manifestations of the same underlying autoimmune process. The labs have been uncooperative in my area to do a correct testing since they changed their procedures. Eric: Rochelle, have you ever had Hepatitis C or B? My mother has Multiple Myeloma so I am being watched for it and I see a hematologist/oncologist. I see my heart doctor every 6 months Ed Moderator: You said an extreme cold can cause a stroke..happens because..how the vessels are reacting? The feedback I get is so amazing that there is such a need for scared people out there Ed Moderator: What type of work did you do in medical field? I have been unable to get another positive Cryo test since. I use an allergist but we don't have an immunologist in our area. Finding a common thread Rochelle: You are right Ed, all my diseases came on in a flash, I know they have to be related. Rochelle: Cryo can affect the heart due to the thickened blood pumping through it. If the blood thickens enough it can thicken enough to damage the heart. We have not outreached to the medical field yet so I believe we will quadruple that in the next year. I mean, there is a diff between discomfort that may accompany vasc, but cryo is a whole different thing? we could learn a lot form the overlaps, IMHO Rochelle: Yes, recommend your group that has any cold sensitivity to get Cryo lab done. If it is positive, it could save them a lot of organ damage down the road. I love ice cream but damage could happen on the inside so I limit it. Peter: l am still mashing it around in my head as to just how hard life would be with Cryo Ed Moderator: And you said because of this you had to relocate to a warmer climate? Not everyone can do this but I was fortunate to be able to do so. For some reason, I ended up with a bunch more dx after that during a 2 yr. I can't crack eggs with gloves because of the mess so my kids do it. Rochelle: Ok, basically what Cryo means or does in our body is when our bodies are subjected to cold (Cryo meaning cold) and that temperature is usually below normal body temperature but it seems to be different for each of us our blood thickens and it causes damage to or vessels and inflammation. To make matters worse, our kidneys have to filter out a protein that is created during this process that thickens our blood and it clogs up our kidneys and does major damage. Ed Moderator: If I remember at the VF symposium in Long Beach there was just one Cryo patient Rochelle: They have many underlying causes such as cancer like Lymphoma or Multiple Myeloma, which we are finding a huge connection. Eric: I see a lot of autoimmune thyroid disease in postpartum women... Ed Moderator: Rochelle, describe how Cryo causes you such sensitivity to temps Rochelle: Well, unfortunately, I have several cold diseases so it can be difficult to tell which is which one. However, obviously Cryo is the most life threatening so I am most cautious. I have photosensitivity which doesn't help me much! movie theaters...restaurant..an office where you have no control over temps Rochelle: Yes, it is now second nature to me but it has taken several years to accustom myself to it. Plus I keep an epipen and those chemical warmers with me Dr. EVERYWHERE is air conditioned to the strato-freeze level! You are one of the "lucky" ones who show more than one. Eric: Yes, treatment is often pred or methotrexate... I can tell you Rochelle..all my years of doing this. And then I moved into the human area and worked for a dermatologist. Eric: Pregnancy is a frequent trigger Rochelle: So I now have a long list of autoimmune diseases, darn it! It takes a Cryo patient a lot to learn how to prepare for dressing in layers Ed Moderator: Rochelle..must have really adapted your lifestyle to this particular aspect of the disease. I keep emergency stashes of socks, gloves and blankets with me everywhere I go. Rochelle: I see, so even though the same underlying cause for the process is there, those 3 conditions exist? Eric: Yes, and in some patients we see only Reynaud’s, in others Cryo. Ed Moderator: Rochelle, Eric...about the treatments... I assume typical meds often for vascultiis patients Dr. Rochelle, was the onset after your first pregnancy or the second? My list of diseases is this: Graves (remission), aortic insufficiency, migraines, IBS, dermatographism, endometriosis, intercystial cystitis, cryo, urticaria's, Ed Moderator: stunning, Rochelle! Rochelle: I, was actually a Vet Tech for many years but you'd be amazed at how that translates into the human field.
It wasn't until 6 months later that my symptoms came. The constant going in and out of the fridge is bad long term so I use a towel. Most drs rarely see 1-2 patients a year with, some with never seeing any. When did they begin and how did they initially manifest.. She ran a ton of different tests to find out things that might be causing it By the grace of God, Cryo was one of them. I cannot go to the grocery store very long at all without having my joints hurt and then getting dizzy and then almost passing out, which my doctor says I could stroke easily because of the sudden cold. My name is Rochelle Ray, Director of Cryoglobulimia Vasculitis Organization Ed Moderator: and we have peter from Australia , Bernie from Washington State. Ed Moderator: You mean the cold temp of the eggs is enough to cause a problem.. Now a warmer climate also brings problems Ed Moderator: How so? My main family and where I grew up and all my drs are in Kansas Ed Moderator: You live in Guam sometimes... Rochelle: No, we live where he works at that time, sort of like the military but he works for the FAA. Rochelle: I have to be honest, as I have started the CVO, I believe there are more of us out there than they realize and also REALLY believe because of lack of medical education and public knowledge, that there are many undiagnosed, so I don't think numbers are accurate. I think there is no good estimate of the number of patients, because the disease is not recognized in many cases Ed Moderator: So let's talk about your onset of symptoms. Through lab tests, my doctor found a positive ANA which showed I had autoimmune issues. I mean in they have a connection to temp sensitivity? I cannot swim in a pool without getting dizzy and start to have breathing issues. Rochelle: Yes, I am on the Vasculitis Foundation Board with Ed, Dr Eric Dr. But that doesn't necessarily mean it's Cryo, right?
Ed Moderator: So Rochelle let's start the discussion on Cryo (if I can just call it Maybe first a definition would be good. Each Cryo patient had different areas of the body affected than others and different severities Ed Moderator: Incredible Rochelle: Not fun, it can be painful Ed Moderator: What is incidence or prevalence, Rochelle? So, anyways, besides cancer, there is also a connection with Hep C. I was dx with Graves Disease first, an autoimmune thyroid condition. Lost a ton of weight, weak and thought I was having heart issues. Ed Moderator: Are those all three connected in some way. Rochelle: I cannot pick up a cold glass of drinks without it being painful to touch. Rochelle, I actually think all three are the same disease with different symptoms Rochelle: What do you mean by being the same, Dr. I’ve never met anyone who had the number of autoimmune diseases you have Rochelle: raynauds, uctd, Sjogrens, Bell's Palsey attack, Scleroderma (Morphea type) and live do Reticularis Dr. And then I moved to rehab hospital working in the medical billing before being a mom. Eric: Rochelle, have you contacted the Vaculitis Foundation? Great lady Ed Moderator: We have people in our group with PAN who complain about sensitivity to different temps..and cold.