Essential Cryoglobulinemia: Flare/Remission Cycle:
One researcher stated that “Cryoglobulinemia is a disorder characterized by periods of remission followed by periods of flaring….“.
- One of the interesting things about truly essential cryo is that it can sometimes be driven into full remission using medication, and if the meds are slowly withdrawn over a long period of time, the remission can remain , so you end up with a medication free remission.
- Typically a medication free remission can last from weeks to months, and sometimes people remain in remission for a year or more. In a few cases the cryo never returns and after 10 years of medication free remission with no symptoms, the patient is deemed “cured”.
- If one looks at the success rate of this approach, about 50% of patients with a medication free remission will flare within the first year.
- Of the remaining patients still in remission about 10% will have a long term remission lasting longer than a year.
- Also, the longer you are in remission, the better the chances seem to be for continued remission (I have no numbers for that but this is based on 8 years of anecdotal experience).
- So lets assume that something like 3% of cryo patients have truly essential cryo (meaning there is no co-occuring cancerous, autoimmune or viral disease causing the cryo).
- the odds of being “cured” in this manner come out to be about 1/10 of one percent if one is looking at all patients with cryo.
- the odds of being “cured” and about two percent for patients with truly essential cryo.
My personal experience with flares and remission.
- In general, if I am not in full remission, I flare anywhere from days to weeks of withdrawing medication. If I have been in full remission for a long time, I can go for weeks, to months. I have had one period of about a year of medication free remission. Genrally if I am going to flare big, it is in the fall months. But I have had flares in the summer too. It does not seem to be predictable, but it also seems as though things that stimulate my immune system make a flare more likely. On one occasion I caught a cold in the summer, anfter a couple of days of that I started to flare, the cold went away on a few days, but th flare persisted for a couple of weeks. It is like that old song “The weight”. a line in it says “I gotta go, but my friend can stick around…”
- I’m lucky in that I seem to respond well to treatment. Even at that, I get surprised regularly and there are unforeseen medical events, and sudden flares.
NOTE: Cryo *always* requires vigilance. Being alert to your condition is the best way to reduce the risks of bad things happening.