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Tuesday, July 24, 2012

A Visit to the Joint Practitioners

I had my second appointment with the new Rheumy and her NP. They are so very thorough and work very well together. They are joint practitioners! Get it? Haha. The Joint Practitioner NP updated my info and examined every single joint again. They found that one knee, the opposite foot and toes and wrist were swollen and inflamed. Weird to me since both knees hurt equally, but only one is swollen. It was kind of a running joke that how no matter what my joints look like at home, they would always look perfect whenever I went to my Rheumatologist! This resulted in her never really believing me when I said I was flaring! So, in a weird way, I was "happy" that the Joint Practitioners (JPs) could see evidence of what I feel.
See how cute, Dad?
I've been on the increased dose of the immunosuppressant shots for the last month or so. As a result, my whole family is finding my hair in and on everything (including some on my head! Imagine that!). I inadvertently pull out handfuls of my hair when I'm washing it, and running fingers through my hair is now inadvisable unless you want to build a nest. I'm not going bald, by any means, but I am definitely losing hair. This happens whenever I go on immunosuppressant chemo meds - they kill rapidly dividing cells, like hair cells. Maybe, though, this is another reason why getting a kitten would be no big deal... we already have tons of hair everywhere from me shedding - how much more could one little kitty contribute? Dad? Mom? Puh-leeeeeease?

Just a spoonful will do!
I also mentioned to JP NP that every Sunday, I feel kind of awful and gross. I do my shot on Friday nights, so she said that that delayed of a reaction would be unusual, but we've all agreed that my body metabolizes things... differently, to say the least. ;) Apparently, it's called the "Methotrexate Blahs," consisting of just feeling "blah," body aches, mental confusion/emotional fragility, headache, etc. There is a remedy, however! Cough syrup! I thought that the JP NP was joking when she announced that... but she wasn't! Apparently dextromethorphan (the "DM" in cough syrup) works on the Central Nervous System in a way that combats the Meth side effects (unfortunately, not the hair loss, though...). I tried it out this weekend, but this weekend I felt absolutely rotten. There were a lot of other factors at play, so I don't know if the Meth or the DM were to blame.

I feel like my joints have gotten a lot better over the last two weeks - they feel a lot stronger, and I don't limp as much - I'm less stiff. That's good. The bad news is that I do still have that inflammation in my joints even while on Prednisone. So, JP Dr. discussed that I may need another medication in order to get the autoimmune inflammation in my body under control, a biologic medication, likely Cimzia. But first, I need to finish tapering off steroids in order to see what my joints are like without roids in my system. She also wanted to inject some of the more inflamed joints injected with a steroid shot. Since all my joints hurt, even ones that aren't visibly swollen, I was not sure how much it would help me, so I declined, but it's something to at least consider for the future.

Also... I told them about the weight gain (and the massive appetite!). Since I've been on steroids numerous times for much longer and at higher doses without gaining a pound (except in my face), we don't think they are to blame. Another candidate is one of my nerve pain medicines. I think we can categorically state that my pain is NOT nerve pain, as I've tried several of these meds, and not a one of them has changed my pain. Since it isn't helping, and it's known for causing the weight gain, the JPs agreed that I should begin the process of tapering off of it over the next couple weeks. Apparently the withdrawal can be quite vicious, and although I'm following a tapering plan, I am feeling very wiped out and kind of foggy - could be from the withdrawal, could be from the steroid tapering, could be from my Meth shot, could be POTS, could be just the autoimmune inflammation... who knows?
Major Motivation

The JP Doc emphasized that I need to be doing some kind of exercise every single day to try to "dig myself out of this hole" that I'm in because of surgery, an insanely long hospital stay, and my constant arthritis symptoms, pain, POTS symptoms, adrenal issues, etc. I have been trying, but will renew my efforts to be consistent every single day. I will make myself a sticker chart, and that shall serve as huge motivation for me. Maybe if I exercise every day for a month, I'll take myself out for ice cream. ;)

So far, I've done my exercises every day (it's been three days. Go me!).

Hannah ;)

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