So now I'm going to start taking cyclosporine every day, something that my allergist says worked on other patients with worse problems. WORSE?? Ok, sometimes when you have a bad problem that weighs on your mind every hour of every day you tend to think you are the only one on earth who carries the burden. I admit to giving in to the poor me, poor me mantra among other mental disorders. Although, when asked how I'm doing I stay upbeat with friends, just beat myself up internally because of my personal aversions to complaining. Hopefully this blog will help me unload the crap.
Back on the subject, so I was to start cyclosporine some time this week (after some preliminary tests) but yesterday evening I had a severe flare up all over. So I took in my new RX for cyclosporine after a call with the go ahead and the pharmacist tells me how horrible I look and what can be done and this medicine is for transplants and you're rash is dark red and you should get a cortisone shot and oh bless your heart you poor poor thing... Well I call the PA at the allergist asking for something stronger like a shot or prednisone before I start the cyclosporine stuff and he calls in an prednisone rx (not too much just 4 days of 40mgs followed by 4 days of 20mgs). When I go in to pick that up a new pharmacist gives me the "I feel so whole heartedly sorry for you" look and wishes me well.
Oh sweet sweet prednisone, how do I love thee? Let me count the ways... I know people say it's essentially selling your health's soul but it works SO WELL and I've always had only side effects that border on euphoria along with a skyrocket of productivity. Not to mention the self esteem that goes along with presentable skin and the sleeplessness that some complain about is negated by the peace I receive from a break in painful discomfort so I sleep soundly. Unfortunately, the PA acts like Mr. Krabs and is so stingy he makes me take long breaks from feeling comfortable. So when I called in today he said ok only because the last time I had some was in October (not that I haven't asked for it since then, I just get denied or given alternatives, poo). I doubt this dosage will have me starring in my own musical but maybe it will help this painful and itchy rash calm down and I won't scare gawkers.
The second visit pharmacist who handed me the prednisone asked me if I've taken it before (I tried to hide the hearts in my eyes) and warned me that it could hurt my bones (I've had a bone density test a couple of years ago with perfect results and I don't drink coke but I kept that to myself). I just nodded until she said it could also make me much angrier in mood. I could not contain my smile but continued nodding. It just makes me laugh because I'm sure if there were a pill that makes people angry every person who has ever known me would beg me to take it. I'm the poster child of passivity. I see aggression in most other people and it unnerves me but I've had others admit my lack of aggression is unnerving. So now I'm on prednisone (effects yet to be felt, though it's only been an hour). As much as I worship prednisone I am glad and appreciative my doctors and PA are cautious with it because if left to my own devices I would end up as the pharmacist and so many others have described looking like the moon faced hunch back with melted organs, crumbled bones and skin thinned to non-existence. Really this drug is so demonized, I do get it. So maybe the cyclosporine will be a good alternative afterwards. Has anyone (if ever I get a reader) had or heard of eczema success with cyclosporine?? I'm so excited (or maybe it's the pred kicking in).
The reason for the delay really has been a problem I've had with doctors. I look great for my appointments, well as great as one can look with bloody scabs, hints of old rashes and dry patches. Then a day or two after my appointment I end up with a tomato red face, butterfly rash and strangers suggesting I get checked for lupus (I have been because even doctors had the concern, test was negative) and asking if I ran into some poison ivy. So the doctor heard me tell him how horrible I can look but probably assumed I exaggerate (although he has seen me at some terribly low points so gives me the benefit). I really was looking good last week, I was thinking that some of my more outlandish self treatments were working...see next post.
Well this is the new plan from the allergist but from my dermatologist visit, she has prescribed a sulfur ointment for my face when it gets overly flaky. I have that at hand but I'm currently more raw and red than flaky (ugh, the terrible never ending cycle) so I'll post my experience when I get around to trying that.
No comments:
Post a Comment