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4. Most autoimmune conditions are not curable but may be treatable. Treatments for many such conditions are broadly the same and few in number. Complete recovery is not, generally, expected as an outcome of treatment; progressive deterioration is always expected. Relapses and remissions are commonplace. Burnout of the illness is possible but rare and may leave residual disability.
Treatments include (in order of toxic severity): IVIG (intra-venous immunoglobulin), plasma exchange, IV steroids and stronger immune suppressive drugs such as those used for cancer. Essentially, all of these suppress your own immune system to stop it attacking itself in the hope that you will make some sort of recovery or at least slow down, or stop, the progression of symptoms. It is impossible to predict what will happen to me. With no diagnosis, any treatment given is just an educated guess. Doctors HATE guessing and HATE giving treatment on the off chance that it will help. This does not leave me in a good place!
Despite causing horrible physical sickness, it seems that IVIG is starting to shape up as the drug of choice – it is cumulative and escalative, with no long-term side effects and can be repeated with frequency. Bring it on! And, they do.
5. All treatment options have unpalatable side effects.
Susceptibility to infection, allergic reaction, weight gain, acne rosacea, osteoporosis, constipation, diarrhoea, skin thinning, skin cancer, gut irritation, liver and kidney dysfunction, hair loss, hair growth, increased risk of other cancers…and on and on and on… With no treatment: full body paralysis, blindness, retention of full mental faculty. Choice, or no choice?
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