Eric: Ed, there are different types based on lab testing... Eric: The blood actually becomes more viscous, because of the large protein complexes... Ed Moderator: By treating with the standard meds for vasculitis that is a blanket of treatment for all of these different diseases? : I'm fortunate, many people in my CVO group are far worse symptomatic than I am. Eric: But a VERY significant illness, and one that needs proper diagnosis and treatment. I used the internet and found Diane Dike, whom I see you interviewed 2 years ago. She already had an org started and she helped me get the CVO started. Peter: I can tell you from me----pain Yes the extremes in the weather hurt me, Bernie: I do not like to hold a cold can of soda in my hand because it starts to hurt and I sit with a blanket over my lap when I watch the news . Rochelle: I want to get that changed some time down the road. Ed Moderator: So the key question--should all vas patients get tested..only if they develop extreme sensitivity to cold? Peter: Dr Eric are you saying that we all should be checked for cryo Dr. Ed Moderator: You probably said it, but what is the test? I really appreciate the chance to talk about this topic. Rochelle: Yes, when I was diagnosed, I was obviously scared. I used to work in the medical field and I love research so I started to do my own. Eric: Yes, both sensitivity to cold (may be Cryo) and sensitivity to heat and sunlight are seen in PAN. The problem is the labs aren't done correctly 7/8 of the time. Eric: yes, there are a lot of bad laboratories out there, but they can learn. They may get concerned that it could be more than discomfort. The lab just needs to know what they are doing with the sample. Thank you all for joining us and I hope you have a good&x2026; WARM&x2026;week. Rochelle: Thank you so very much for this forum, Ed. 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? 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. 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. may have some influence on treatment Rochelle: I was not typed initially. I would love to be able to trace the inter-relatedness of the diseases. I've never seen an immunologist and always wanted to! Or do you have to have targeted, specialized therapy for individual diseases? Eric: Yes, the "good" news is that most of these will respond to corticosteriods, immunosuppressants, and biological agents, but finding the right mix can be a challenge Rochelle: Sad but I have learned to be grateful and if u look at me, I look just fine Dr. I began it about 1 year ago and it now has 36 members since beginning the support group 6 months ago. Peter: l can't sit in a room with an a/c unless l put a blanket over my legs Ed Moderator: But to clarify..all vasculitis patients with sensitivity to temps or cold specifically may be at the level of danger that you're at, correct, Rochelle? Eric: There is a whole "autoimmune battery" that I would run on everyone who has evidence of an autoimmune disease... By accessing this web site, you are agreeing to be bound by these web site Terms and Conditions of Use, all applicable laws and regulations, and agree that you are responsible for compliance with any applicable local laws.If you do not agree with any of these terms, you are prohibited from using or accessing this site.
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.
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?
My name is Rochelle Ray, Director of Cryoglobulimia Vasculitis Organization Ed Moderator: and we have peter from Australia , Bernie from Washington State.
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.
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.