How I know do I know if a flare is coming???
One common characteristic of cryoglobulinemia is that of periods of remission followed by periods of flaring.
Very often, if one can spot a flare coming early enough and treat it early, many if the damaging effects and a lot of suffering can be avoided by forcing it back into remission with medication (usually high dose prednisone) before the situation gets out of hand. I am going to outline here what I have experienced with cryo in the hope that it will benefit others. Please bear in mind that each person is a bit different, and that not everyone experiences the same set of symptoms with cryo.
The very first symptoms that I usually get before a flare starts are malaise, myalgia, and fatigue.
Malaise is a general feeling of “not well”. It can be subtle , this feeling will usually persist for a couple of weeks before strong, overt symptoms appear.
Myalgia is muscle weakness. This is generally due to muscles deteriorating due to vasculitis. My blood work might show an elevated C reactive protein and an elevated erythrocyte sedimentation rate at this time. If the muscle loss is significant, I might begin to experience rapid weight loss. Achy muscles are sometimes a problem. I sometimes end up with a few splinter lesions under my fingernails as an early warning that I might flare soon.
Fatigue starts gradually. I feel tired. A little extra sleep is sometimes needed , and I tire easily.
After a couple of weeks of these rather subtle symptoms I begin experiencing mild arthralgia… Achy rheumatoid arthritis-like symptoms, particularly in the morning. Typically my knees and feet are affected first and I am generally a lot stiffer for the first couple of hours in the morning, and limber up a bit later in the day. The swelling and joint pain are always symmetrical, affecting the left and right joints more or less equally, and seems to start at the lower part of the body and works its way up as the situation worsens.
After a few days of mild arthralgia I suddenly find myself faced with a full blown flare and often have severe RA symptoms to the extent that I can not walk or stand without a cane. Sometimes my hands are so stiff and sore that I can’t use them for a while in the mornings. Swelling in my feet and legs can be so bad that my shoes no longer fit. I really need to begin treating my flare with high dose prednisone by this time, in order to avoid further damage to my body. At this point , I begin seeing a few petiachae on my feet, and sometimes my hands, I may develop palpable purpura , or necrotic lesions with dry gangrene. I sometimes experience raynauds’s phenomena, and on one occasion had a remarkably vivid display of levido reticularis. I sometimes develop skin ulcers which take months to heal. Neuropathy seems to be more intense at this time. Treating at this point is a little late, because a lot of damage has been done by the time remission can be reestablished. But treatment is still necessary because in my case the cryo has never remitted on its own. It just gets worse until it is treated.
The thing that is happening is that cryoglobulins are rapidly building up in my blood and the immune system breakdown products causing the vaculitis are increasing. If I wait too long to treat my flare, the cryoglobulin levels will have risen to the point that the vasculitis becomes a process that will continue until all the undesired “wreckage” of immune system components are cleared from my body…. this can take a while, even if I have already started on high dose prednisone to halt the flare. But, if I treat the flare early, I can reduce the amount of damage and misery by quite a lot.
NOTE: Not everyone with cryo experiences symptoms of rheumatoid arthritis, or lesions, skin ulcers, or even a rash. in some cases the sole presenting symptom is neuropathy, while other people only experience a mild rash. It all varies from one individual to the next, so become familiar with your cryo (I am sure you already are) so that you can spot these trends early and hopefully find medical help to halt the flare before it does much damage.
ADDENDUM: The problem with the “prodrome” that leads into a flare is that it is subtle, and unreliable. Sometimes I’ll feel a little tired and achy for a few days, and it just goes away.. no flare happens. I have also had no real prodrome, but have gone straight into a big flare, with little to no warning.
Usually I do have early warning symptoms, and I need to stay alert and aware of my condition so that I can treat the flare as soon as it escalates into a full blown flare… When it does start to flare “big” it is sudden, and it frequently escalates within an hour. A common scenario is that I might be sitting in a chair working at the computer for a while, then discover (when I try to get up), that I am flaring. This frequently happens in the evening for whatever reason… and when it does, I keep my phone and my cane next to the bed in case I discover that I am very ill when I wake up on the morning. More than once I have discovered that I could not stand or walk without my cane when getting up in the morning. Fortunately, I usually loosen up a bit after a couple of hours.