Quote:
Originally Posted by Deanna16
(or Lisa re: your hubby) when you got your predisone, were you just on that or something else with it?
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Prednisone by itself hasn't proven very effective for either AA or MDS. Ken only got it as part of the ATG/cyclosporine protocol. All three have immune suppressive qualities, but prednisone's main role in it seems to be to combat serum sickness from the ATG. It is generally discontinued once that ceases to be an issue. Not a moment too soon for him, he HATED it! Not only the blowfish thing, but horrible mood changes, everything tasted funny, oral thrush infection, skin rash, etc. etc. Ugh. For his second round they gave him a greatly reduced dosage and faster taper since he hadn't had any serum sickness issues the first time around. That was much better.
It's mainly the cyclosporine, which he's still taking after more than 5 years. That is a drug usually given to prevent organ rejection. Normally that is tapered too around 6 months post-ATG, but his first taper resulted in a relapse, after which I read that a) people with a trisomy 8 mutation are often permanently dependant on cyclosporine, and b) that long-term CSA (cyclo) dependancy has also been observed in 26-62% of patients following ATG. That was enough to keep us from attempting another taper, and he's done well on it.
Yes, I think the theory that AA is an autoimmune disorder came about as a result of the finding that it responded to ATG, rather than any concrete evidence showing an autoimmune response. There are other theories that there may be some viral elements too, but as far as I know nobody's isolated a specific virus yet. Anyway, whatever works.
Ken does not have a family history of autoimmune illnesses (my family does, but I don't have AA!) I've talked to at least one other patient who was tested for autoimmune disorders and found none. If there is any discernable pattern for AA patients it seems to be that most of them had been unusually healthy and active throughout their lives, up until the point they were diagnosed. I have no scientific evidence to back this up, it's just that on one of the other forums we got used to hearing the same story over and over, i.e. "I've hardly been sick a day in my life, I've been athletic and taken good care of my health, so why is this happening to me?" We've found no answers to that question, but it has come up far more often than any relation to other sets of circumstances, including environment, chemical exposure, autoimmune conditions, vaccinations, etc. I'm not saying that these things couldn't play a role in some cases, just that I haven't seen a prevailing trend among the forum users.