Rare Disease- Cryoglobulinemia

Just an update about my recent Cryo Flare. I hope this helps others to better understand how Cryo affects some of us. If you missed my post, I let the group know that my docs agreed that my cryo is in remission with Rituxan Treatments for maintenance just 2 weeks ago. My Cryo test has come back NON-Detected for over a year and my blood work is just SHOCKING to see so many NORMALS. One doc actually had to check the name to see if these were my results because they were so incredible NORMAL.

It’s taken me since 2009 to get to this point. I had many years of fear, depression, anxiety, feelings of isolation and facing what I thought was a death sentence. Once my team of docs, along with myself, started understanding how Cryo works in my body we gradually found out what my triggers are, what the signs of my Cryo becoming active are, how much cold prevention I need to be aware of and what steps to immediately take before things get out of control. We try to be 10 steps ahead of those Cryo Critters. Well maybe not 10.

Now, for this weeks update. I also posted last week about a flare I had on one of our threads when visiting a museum and suddenly the AC came on blasting icy cold and I didn’t have my bag of Emergency clothes with me. My Cold Freezes or Cold Soaks, as Glen Gardner calls them, start with ice stinging, painful ears and eyes. I usually cover them up immediately to see if I can stop the Freeze from going any further. Next I start getting a headache and feeling like I’m going to fall over or pass out. By this time I know I’m in trouble. I ran out of that place as fast as I could but it was to late. Since I wasn’t home I resorted to covering my mouth and nose and breathing as fast and heavy as I could to help heat up my blood and help to get it flowing. When that didn’t work, I put my coat over my head and my mouth and nose down my shirt to heat up my body. Along with these actions I started walking as fast as I could. After about 45 minutes I started to feel like I was starting to thaw. This is a very frightening experience even through I’ve had this happen to me many times. It’s on the edge of feeling like I can’t undo what is going on. But when the thaw starts to hit I know I’ll be OK for now. (As a reference to this happening, this is my blood coagulating and reducing its normal flow).

Later that night my rash broke out on both of my legs. I haven’t had a rash showing like this in about 18 month. I’m not really sure how long to be honest. It was both disappointing and scary. It’s hard to find the happy medium between, believing all is well and not sitting in fear that something might happen!! It’s the Cryo Roller Coaster Ride that isn’t so thrilling.

Now the point of all of this is that even though your test comes back Non-Detected, Cryo can STILL be active in your body. So, I have discovered the hard way. It all can’t be picked up in the blood test, so I’m told.   Some of the patients in our Cryo support group have told us that their doctors won’t treat them because of this. NOT GOOD!! Also, some patients receive results with % of Cryo or other types of measurements about the level of Cryo and also are NOT treated by their physicians because they don’t think the results are high enough. This is a big issue to get past with your docs because they just don’t know enough about Cryo but who really does. Scary isn’t it? But my Doctor, Dr. Ferber from Cooper Health Systems in NJ, seems to understand it quit well and has taken me from what I think of as going down to having a pretty normal life with modifications.

Please do learn to be very aware of your body and what your triggers are. Understand your blood work and all of your test results. Be proactive and assertive with your care. Educate your docs. It’s our job if you want to learn now to Live With Cyro.

I’m fortunate to have a doc that believes in both Cold Prevention and Treating the Symptoms.

When I went to see my Oncologist, Dr. Ferber today, this is what we observed;

  1. All my blood work looked better than it did since 2009.
  2.  I am feeling great. No fatigue, no major body pain but some joint and back pain which may or may not be RA or Cryo. I have clear thinking, kidneys are good, heart and lungs are all stable. Neuropathy is the same but I can live with it. I look healthy. Yeah!

All seemed to be good except my voice problems which may or may not be related to Cryo. BUT, my RASH appeared and I experienced a Cold Freeze last week! Roller Coaster here we go again.

Rash, known as Purpura.
Todays Appointment, 1 week after the Flare.

We WERE going to consider cutting back my Rituxan treatments from every other month to every 3 months because I was doing incredible well.

What to Do now that I had this unexpected Flare?

  1. Do we treat the Symptoms or wait until we see a change in my blood work?
    2. If we wai,t will my kidneys start to decline, will my hemoglobin decline, will I continue to have these Cold Freeze? I’ve already had kidney and heart failure so this is a big issue for me.
    3. If we wait, how will I handle the AC with the outside temps getting hotter?
    4. It’s obvious that AC is still a problem considering the Cold Freeze of last week.
    5. Test is NON DETECTED but obviously enough is present to cause a flare even if it is minor. We both agreed that this was unexpected from my previous experiences with Cryo.


We both agreed that it is in my best interest to still stay with this month’s infusion to hold off any complications that might occur. As you can see our decision we came to was based on Symptoms. Unfortunately not all doctors agree with treating our patients when just symptoms are present. Obviously this is an area where we need to spread as much information as we can to both our doctors and other patients.

Dr. Ferber concluded today with the same statement he has told me over and over again. “Some patients have a high Cryo count and have NO Symptoms and some patients have a NON Detected and have a serious case of Cryo”. I asked him if he knew of any documentation or studies on this and he said there was one from many years ago. I asked him if he would find it for me to share with all of you and to share on our website. He said, “Of course, it is very important that patients receive treatments or Cryo can get out of control and doctors need to know about this information that appears to me contradictory. As soon as I receive the paper I’ll post it for all of you.

Sorry for this long post but I do think it will help some people especially our new Cryo folks. Stay Warm. AC is brutal. Don’t forget to touch your nose in AC. If it’s cold you are too COLD.