Entries by Glen

Essential Cryoglobulinemia is Real! We need more research!

Is essential cryoglobulinemia real ? Essential cryoglobulinemia (or idiopathic cryoglobulinemia) is cryoglobulinemia with no apparent cause. Most of the time, cryoglobulinemia is caused by “something”. Usually it is caused by Hepatitis C. In the Mediterranean region, at least 90% of cases of cryoglobulinemia are associated with Hepatitis C. In the United States, the rate is […]

Cryo and Arthritis

Cryoglobulinemia can cause arthralgia (arthritis-like symptoms), less frequently cryoglobulinemia can cause arthritis which is difficult to distinguish from rheumatoid arthritis This includes the erosive form of rheumatoid arthritis. Just like rheumatoid arthritis, the arthritis caused by cryoglobulinemia requires that rheumatoid factor be present. If you have type II or type III cryoglobulinemia , you are […]

Cryoglobulinemia: The Triple Whammy

Cryoglobulinemia: The Triple-Whammy! Cryo has a way of hitting you from three different directions. Usually when we are flaring we only experience one or two of them. But in a big, bad flare it can really hit you hard with all three. 1) Hyperviscosity syndrome: Accumulating cryoglobulins can make your blood a lot thicker if […]

Quantitative vs. Qualitative Cryoglobulinemia Testing and a Second Positive Cryo Test

Qualitative vs Quantitative testing for Cryoglobulins The qualitative test for cryoglobulins is a test for the presence of cryoglobulins only. It gives no indication of the level or type of cryoglobulins found. The quantitative test for cryoglobulins returns the type and level of cryoglobulins present. A single qualitative positive test for cryoglobulins qualifies as a […]

Scary Worst Case Body Stuff

Picture by Dale Sears Internal organ involvement is insidious. You might not feel any pain or discomfort until the affected organ is severely damaged. Fortunately, this does not happen most of the time. The thing one has to remember is that cryo is a systemic vasculitis and can affect any organ and any system in […]

Essential Cryo: My Medication Induced Remission

I’ve been diagnosed since late 2008. I’ve spent most of that time in treatment for it with pretty good results most of the time. My rheumy and I made a try for a medication free remission which lasted about a year. That remission failed in August of 2013, and until October of 2014 I was […]

Remission in Essential Cryo: A simplified explanation.

This is a  *vastly* simplified breakdown of how remission probably works in essential cryo. The cryoglobulin is both an antigen AND an antibody. Cryoglobulins are produced on the surface of B cells that apparently have matured past the usual age at which they are programmed to die. In essence, the immune system wakes up due to […]

Cryo and Pain Medications

Pain is the body’s way of alerting – please talk to your doctor about any pain so that the cause can be diagnosed. Here are some medications some of us in the support group have tried.  Check with your doctor and report your pain to them. For neuropathic pain , neurontin works for some people, […]

Essential Cryo: Flare Remission Cycle

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 […]

Managing My Cryo: Imuran, Steroids and Balance

Starting on Imuran:  I’ll be starting on Imuran this weekend. I was on a combination of cyclophosphamide, antibiotics, and prednisone for 3 months, to force remission and withdrew the cyclophosphamide two weeks ago to “wash out” a bit before starting the transition to Imuran. Right now I am on 30 mg prednisone per day only […]

Five Stages of Accepting: Learning to live with Cryo.

Five stages of accepting a Diagnosis of an incurable disorder or disease. Receiving a diagnosis of Cryoglobulinemia is scary and it is hard for our families and friends too. It is actually a grief process that we go through, not unlike the loss of a loved one, and it takes a while for us to go […]

Steroid Side Effects

Common Steroid Side Effects   → Prednisone is commonly used to treat autoimmune disorders. The benefits of it are that it is fast-acting (takes effect within hours) and is frequently effective for bringing a flare to a speedy halt in many autoimmune disorders.  While the plus side is the good news, prednisone has an “evil” side […]