Monday, December 5, 2016

Of course I'm the 1%

So when I last saw my immunologist he said he wanted  me to see a dermatologist because I showed him my cheset that had pimples/sores all over it (but not under my breasts or under my axillas) and he was all concerned because he was sending me to a different hospital in big city.... I figured what's the difference, big city hospitals are all the same. I figured I would be getting a good Dr either way, so I agreed.

So I saw the Dr.... or actually I saw the resident who took my history and prettty much had me disrobe and checked me out from hide to hare, from tip to top... you get my drift - really, I don't get why they even gave me a hospital gown! Hahaha

So when the dermatologist came in and asked the resident what he thought I had, the resident confidently stated - hidradenitis suppurativa.... a condition that affects ONE, yes ONE percent of the population!!!!!!!!!!!!!!!!  Let that friggin sink in!!!!!!!!  Holy shit bat man.

Go figure... It doesn't really surprise me that I''m the one diagnosed with this! It seems to me that with everything that's been happening that I would be diagnosed with something that is rarer than rare.

So you want to know what it is I'm sure... well it's essentially where my body is attacking the hair follicles and oil glands and it's overly inflammed and such - so it's creating little pockets of abcesses of pimple looking things. And sometimes it can create fistulas - like what happened to my bottom - yep....  he thinks that my bum issues are related to this condition!!!

An answer!!!!

Once they checked my skin and told me how severe it was, the dermatologist asked the resident what medication I should be started on.... she suggested clindamycin and rifampin, but those meds interfere with my insomia meds - amitriptyline & quetiapine - and so have to go to the next highest level which happens to be the highest level - Humira (Adalimumab) which is super expensive - think $3000 per dose - which will be $21,000 for the first month alone and then $12,000 there after!!! Crazy right!

So the doctor's office contacted the medication company to start the process who then contacted me to get the process started on that front - then we contacted my insurance company who indicated that in order to be covered it had to be "preapproved" and so my derm's office had to send info to the insurance company with info about this and then the medication company will be contacted to say that it has been approved and then they will contact my pharmacy to order the med and then will inform me as to where I can go to do my first injection because the first one has to be observed in case I have an anaphylaxtic reaction - which I doubt but still.

For my condition and med It's liquid medication that must be injected subcutaneously like insulin and so I've chosen a pen system, just like an insulin pen. For my first dosage I have to inject FOUR doses!!! Crazy right! It's essentially to shut off my immune system. What that means for my immune system I don't quite know, because as you know (if you've read any of my history), I''ve gotten a TON of infections - and weird ones, one after another..... I know I have several right now actually. But whatever.

Tomorrow I have to see my primary physician to get some antibiotics to deal with the infections because if we turn off what immune system I currently have, I'm going to be screwed! So I'm sure that tomorrow I'm going to be put on IV antibiotics.... or at least that's what I'll be pushing my Dr for. I think that's the best option if we're going to be dealing with the issues at hand. I know that I have a resp infection - I think I should do a sputum culture - and I know that I have a UTI (cloudy yucky urine with intermittent lower back pain) - I figure if he puts me on Erterpanem then that will deal with the UTI..... for the sputum resp issue I think possibly a Z-pack and wait for the culture to come back for sensitivity and I think that since I'll be taking all these antibiotics I'll suggest Flagyl as a precautionary thing so that I don't end up with C-diff! Cuz really, we're talking about me here, I'm the 1%, I'll end up with c-diff!!!

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