TITLE: PAN / Vasculitis Chat: What is Cryoglobulimia?
DATE: March 24, 2011
Ed Becker: PAN Support Director / Moderator
Rochelle Ray: Director of Cryoglobulimia Vasculitis Organization
Bernie: PAN Group Member
Peter: PAN Group Member
Dr. Eric Hoy: Immunologist
Cryoglobulinemia Facebook Page: http://www.facebook.com/groups/318304641519371/
Ed Moderator: There she is....HI Rochelle
Rochelle: Hello everyone!
Peter: Hello Rochelle
Ed Moderator: Welcome to our chat Rochelle
Rochelle: Hello, Dr. Eric. 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. And of course the man of the hour&151;Dr. Eric Hoy. Okay, Rochelle, let's get down to Q and A. Start off with some backstory and tell us about yourself, where you live, family.
Rochelle: Ok, personal story. Married, 2 kids. 13 & 15 yrs. old. I travel full time for my husband works. Unusual lifestyle. We are in Guam right now. Usually move every 3-6 months. I homeschool my 2 boys. My main family and where I grew up and all my drs are in Kansas
Ed Moderator: You live in Guam sometimes...I mean go away and come back?
Rochelle: No, we live where he works at that time, sort of like the military but he works for the FAA. We only go back to KS 1-2 times a yr. for dr visits, etc.
Ed Moderator: So Rochelle let's start the discussion on Cryo (if I can just call it Maybe first a definition would be good. An overview of what the disease is, what it does. How it manifests itself?
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. This in turns damages our organs, too. 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. 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?
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. Most drs rarely see 1-2 patients a year with, some with never seeing any.
Dr. Eric: I agree with Rochelle... 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. When did they begin and how did they initially manifest..
Rochelle: About 8 yrs. ago I was diagnosed with Graves Disease. Most patients don't have just Cryo. although that does exist.
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. So, anyways, besides cancer, there is also a connection with HepC. Well, I stumbled onto my Cryo. I was dx with Graves Disease first, an autoimmune thyroid condition. I got very sick fast. Lost a ton of weight, weak and thought I was having heart issues. Through lab tests, my doctor found a positive ANA which showed I had autoimmune issues. 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. It wasn't until 6 months later that my symptoms came. For some reason, I ended up with a bunch more dx after that during a 2 yr. time frame
Dr. Eric: Rochelle, was the Graves' postpartum?
Rochelle: Yes. How interesting.. First time I was ever asked that question.
Dr. Eric: I see a lot of autoimmune thyroid disease in postpartum women... part of my research
Rochelle: Very interesting!
Ed Moderator: Is that a common thing, Dr. Eric? I do recall that it has been shown that postpartum can be possible trigger
Dr. Eric: Pregnancy is a frequent trigger
Rochelle: So I now have a long list of autoimmune diseases, darn it!
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.
I have Cold Urticaria, Raynauds and Cryo! However, obviously Cryo is the most life threatening so I am most cautious.
Ed Moderator: Are those all three connected in some way. I mean in they have a connection to temp sensitivity? What specific symptoms did you experience? Did you suddenly develop reaction to cold temps?
Rochelle: I cannot pick up a cold glass of drinks without it being painful to touch. I cannot swim in a pool without getting dizzy and start to have breathing issues. 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. The constant going in and out of the fridge is bad long term so I use a towel. I can't crack eggs with gloves because of the mess so my kids do it. I love ice cream but damage could happen on the inside so I limit it.
Ed Moderator: You mean the cold temp of the eggs is enough to cause a problem..
Rochelle: yes! Even getting into bed that has cold sheets hurts!
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?
Rochelle: Yes, good memory. Not everyone can do this but I was fortunate to be able to do so. Now a warmer climate also brings problems
Ed Moderator: How so? But heat doesn’t affect you.. a sensitively to heat?
Rochelle: Air conditioning! Going in and out of buildings with a/c. You’re outside and you're warm. then you go into a building with a/c. Ouch! The temp change hurts! I have photosensitivity which doesn't help me much! but not necessarily to heat itself. : You’re not dressed for it! It takes a Cryo patient a lot to learn how to prepare for dressing in layers
Ed Moderator: Rochelle...you must have really adapted your lifestyle to this particular aspect of the disease. movie theaters...restaurant...or 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. Grocery stores are the worst! Dr offices are the 2nd worst! I keep emergency stashes of socks, gloves and blankets with me everywhere I go.
Plus I keep an epipen and those chemical warmers with me
Dr. Eric: Come to Texas... EVERYWHERE is air conditioned to the strato-freeze level! Rochelle, I actually think all three are the same disease with different symptoms
Rochelle: What do you mean by being the same, Dr. Eric? I'm intrigued? Very interesting!
Dr. Eric: I think they are different manifestations of the same underlying autoimmune process.
Rochelle: I see, so even though the same underlying cause for the process is there, those 3 conditions exist?
Dr. Eric: Yes, and in some patients we see only Reynaud’s, in others Cryo. You are one of the "lucky" ones who show more than one.
Rochelle: I've heard about me being lucky, lol!
Dr. Eric: Is your Cryo type I, II, or III?
Ed Moderator: What does that mean, Dr. Eric...1, 2, 3?
Dr. Eric: Ed, there are different types based on lab testing... may have some influence on treatment
Rochelle: I was not typed initially. I have been unable to get another positive Cryo test since. The labs have been uncooperative in my area to do a correct testing since they changed their procedures.
Ed Moderator: Rochelle, Eric....talk about the treatments...I assume typical meds often for vascultiis patients
Dr. Eric: Yes, treatment is often pred or methotrexate... it depends on the underlying condition. too. Rochelle, was the onset after your first pregnancy or the second?
Rochelle: Second pregnancy.
Dr. Eric: Rochelle, have you ever had Hepatitis C or B?
Rochelle: No, I have not had hepatitis. My mother has Multiple Myeloma so I am being watched for it and I see a hematologist/oncologist. My list of diseases is this: Graves (remission), aortic insufficiency, migraines, IBS, dermatographism, endometriosis, intercystial cystitis, cryo, urticaria's,
Ed Moderator: stunning, Rochelle! I can tell you Rochelle...in all my years of doing this. 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. Eric: Other than that you're fine?:)
Rochelle: That is it so far! Yep, lol!
Dr. Eric: WOW! You are a graduate student's dissertation! I would love to be able to trace the inter-relatedness of the diseases.
Rochelle: Dr Eric, you can see me any day. I've never seen an immunologist and always wanted to! I use an allergist but we don't have an immunologist in our area.
Ed Moderator: Yours could be a significant case. Finding a common thread
Rochelle: You are right Ed, all my diseases came on in a flash, I know they have to be related.
Peter: How much does Cryo effect the heart?
Rochelle: Cryo can affect the heart due to the thickened blood pumping through it. Plus all the meds we take can damage it. If the blood thickens enough it can thicken enough to damage the heart. I see my heart doctor every 6 months
Ed Moderator: You said an extreme cold can cause a stroke...this happens because...what how the vessels are reacting?@
Peter: so stroke is a possibility?
Rochelle: Stroke is more likely for me. I watch that more closely.
Dr. Eric: The blood actually becomes more viscous, because of the large protein complexes... this can cause stroke or other vascular blockage.
Ed Moderator: By treating with the standard meds for vasculitis that is a blanket of treatment for all of these different diseases? Or do you have to have targeted, specialized therapy for individual diseases?
Dr. 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. Eric: a common trait: "You don't LOOK sick!"
Rochelle: Invisible Illness. : I'm fortunate, many people in my CVO group are far worse symptomatic than I am.
Dr. Eric: But a VERY significant illness, and one that needs proper diagnosis and treatment.
Ed Moderator: Tell us about your group. You started a foundation.
Rochelle: Yes, when I was diagnosed, I was obviously scared. There was hardly any info out there on it. I used to work in the medical field and I love research so I started to do my own. I used the internet and found Diane Dike, whom I see you interviewed 2 years ago. We connected. She already had an org started and she helped me get the CVO started. I began it about 1 year ago and it now has 36 members since beginning the support group 6 months ago. We have not outreached to the medical field yet so I believe we will quadruple that in the next year. 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?
Rochelle: I, was actually a Vet Tech for many years but you'd be amazed at how that translates into the human field. And then I moved into the human area and worked for a dermatologist. And then I moved to rehab hospital working in the medical billing before being a mom.
Dr. Eric: Rochelle, have you contacted the Vaculitis Foundation?
Rochelle: Yes, I am on the Vasculitis Foundation Board with Ed, Dr Eric
Dr. Eric: Ah, so you know Joyce!
Rochelle: Yes, I know Joyce. Great lady
Ed Moderator: We have people in our group with PAN who complain about sensitivity to different temps...hot and cold. But that doesn't necessarily mean it's Cryo, right?
Rochelle: What is their complaint exactly? Rash, pain, . . .?
Ed Moderator: Dr. Eric...what do you think? We have people who can't take heat. They get rashes, yes.
Dr. Eric: Yes, both sensitivity to cold (may be Cryo) and sensitivity to heat and sunlight are seen in PAN.
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 .
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...not all vasculitis patients with sensitivity to temps or cold specifically may be at the level of danger that you're at, correct, Rochelle? I mean, there is a diff between discomfort that may accompany vasc, but cryo is a whole different thing?
Rochelle: It is always worth checking into. Get the labs done. I agree Dr. Eric. The problem is the labs aren't done correctly 7/8 of the time.
Dr. Eric: yes, there are a lot of bad laboratories out there, but they can learn.
Rochelle: I want to get that changed some time down the road. That is one of my goals.
Ed Moderator: So the key question--should all vas patients get tested...or only if they develop extreme sensitivity to cold? Dr. Eric: The Cryo test is such a simple lab test... I wish docs would order it more often.
I would recommend it for all patients.
Rochelle: So unfortunately, I think a lot of people are going around thinking they don't have it when they do.
Ed Moderator: There will be pan patients who read this and say they have reaction to cold. They may get concerned that it could be more than discomfort.
Peter: Dr Eric are you saying that we all should be checked for cryo
Dr. Eric: There is a whole "autoimmune battery" that I would run on everyone who has evidence of an autoimmune disease... we could learn a lot form the overlaps, IMHO
Rochelle: Yes, recommend your group that has any cold sensitivity to get Cryo lab done. It is an easy blood work to do and it can't hurt. If it is positive, it could save them a lot of organ damage down the road. Do PAN patients have pos ANA?
Dr. Eric: Most PAN patients are ANA negative.
Ed Moderator: You probably said it, but what is the test? blood test?
Rochelle: Yes, it’s a simple blood test.
Dr. Eric: Yes, it's a blood test, and can be done along with all the other tests without any trouble. The lab just needs to know what they are doing with the sample.
Rochelle: Is that where you are Dr Eric, Texas?
Dr. Eric: Yes, I'm in Dallas.
Rochelle: We are trying to permanently transfer to Houston area. I have travelled all over the US and
that seems to be where I think I can live both $ and temp.
Dr. Eric: Houston is definitely warm... warmer than Dallas
Rochelle: By far, those few hours make a huge difference!
Ed Moderator: Well, Rochelle this has been a hugely informative chat. Thank you all for joining us and I hope you have a good&x2026;WARM&x2026;week. &xF04A;.
Rochelle: Thank you so very much for this forum, Ed. I really appreciate the chance to talk about this topic.
Dr. Eric: Yes, I agree. Very informative.