My Study dr for the Humira study called last week as she usually does once a month. We where talking about this study, how it is going and what comes after the study wraps up in a few months (the study was originally slated to last 52 wks but was recently shortened to roughtly 24wks (I can't remember the exact amount of wks it is now it may be a bit more but somewhere in that 24 wk range).
Anyways so I had asked Dr.Polgreen if I where able to get one of my drs to prescribe the drug either before the study ended or after could we still do the testing that she would have done in the original year long study? She actually seemed really excited by this and talked quite a bit about how this might be possible.
I messaged my Primary dr that same night to see what her thoughts where and she (Dr.Simpson) messaged me back the next day that she reached out to 1 of her colleagues, a Rheumatologist about my case to get his opinion.
This Dr raised a few potential concerns like insurance often raised a stink (Dr.Polgreen did give suggestions how to better go about getting insur., to cover the med with my diagnosis and the arthritis like joint issues MPS I causes) and as well that Humira has a known risk potential for causing congestive heart failure - an issue I/my Team have dealt with/managed before my 3 Open Heart Surgeries but he was willing to see me. That Appt is set for a few weeks from now.
I love that my PCP is so willing to help and she's kind of amazing how fast she goes about tracking information down or talking to colleagues of hers to figure out how best to deal with an issue!
Cardiology - INR, Home test machine!?
INR, Up, down, up, down, will stabilize then falls again so my Cardiology Nurse when she emailed me last week with another below range level (for about the 90th time after it had stabilized for about the 90th time) suggested we try getting a home INR testing machine.
Apparently they don't always recommend these for their Pts but b/c mine is so unstable and my risk is pretty high for blood clots and I live a fair distance for either place I can test at (either my Primary drs sites in Madison, an hour drive or Cardiology's Hospital in Milw at CHW also an hour) + every time I travel and then have to check INR I have to figure out where to get it checked (have 1 of my Providers at wherever I am traveling order the lab) having a home tester would offer a lot more flexibility.
I'll still mainly test INR at my Infusion on Tues's since I am there anyways and any time I am at a drs appt anyways but to have this home tester when we need to test in-between and when I am on Lovenox will offer much more flexibility. Will kind of be the best of both (lab testing and home testing)!
Neurosurgery - Shunts/Headaches
Otherwise (and I seriously feel like I write this EVERY SINGLE TIME) the headaches and related symptoms have con't I just honestly can't get myself to call and reschedule the Neurosurgery Appt. I am so (I guess) burned out on that whole issue and feeling like I am not even listened to anyways when I talk to my Neurosurgeon yet I feel really, really yuck from a pressure standpt.
It's obvious atleast 1 shunt is working as I feel ok, I just don't feel great. I feel tired All. The. Freaking. Time. and bladder, which has been so good on the Humira has been sooooooo bad, I literally feel like it's so irritated but not in a infection kind of way.
Humira Study - travel to L.A
I travel to Los Angeles this week for the Humira study this wk so will ask them about this, why they think it might have helped so much and why it might seem so bad now. Is weird.
Anyways will try to update maybe after I get back from the study visit (I leave Weds get back Fri, nice and exhausting).
Thanks for stopping by,
Erica
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