Late last wk, beginning of this wk I couldn't help but smile to myself as it's really seems like I may be on the Humira (vs placebo) - obviously I won't really know till week 16 but for several reasons I suspect it's actual drug. Anyways 1 of the 1st things I've noticed is instead of waking up 3-4 or more times a night (which when the shunts are being good that 3-4 time a night for me is actually relatively good. When the shunts are being an issue I often wake up 5-6+ times a night to go to the bathrm. Anyways so the past wk or so up till mid this week I had on average every night but 1 woke up only once during the night!! That was/is awesome!
Of ourse my body being my body that couldn't last to long. A few days ago the pressure (headaches) that has been getting worse (definitely not as bad as sometimes but definitely worse) was pretty bad and bladder/low back/abdomen where seeming super irritated and incredibly uncomfortable. It didn't seem to matter what I tried I could not get the abdominal/side pain and radiating pain down my L leg to go away for the life of me and so minus going to a Appt I'd already had scheduled with my Primary dr (I guess good timing given these new issues =/ ) I have not done much the past 2.5days.
PCP Appt - Neurosurgery issues
Since I was seeing her anyways I brought up these new symptoms to my PCP who is concerned there might be a shunt infection going on. The risk of this is pretty small but she's still concerned and wants to rule it out b/c I've had low grade fever on and off for months during my infusions (I don't remember how she explained the possible relation but at the time it made sense if there where in fact an infection). Those fevers + starting the Humira a few wks ago (which can lower ones immune system) and the overall symptoms Dr,Simpson opted to call my Peds Neurosurgeon after I'd left her office yesterday.
He in turn apparently agreed with her we should tap both shunts and test the Spinal fluid just to be sure. That Appt was originally next wk but b/c the past 1.5days have been exceptionally bad - last night being realllyyyyyyyy baaadddd Neurosurgery moved the Appt up to tmrw (Fri) morn.
I am really not psyched at still another Appt this wk but hopefully is an easy Appt and can figure things out or get an idea what might be going on whether shunts or not. I am really grateful my Primary dr., called and talked to Dr.Iskandar on my behalf. She's one of my favorite drs on my Team (and I genuinely like my entire Team) as she spends way more time than she'd have to on my care, simply making many things less difficult. Anyone in the MPS (or chronic illness) world knows dedicated drs can make a world of difference!
Lovenox / Coumadin -
I've been back on the Counadin (oral blood thinner which we went back to and replaced the injection Lovenox I had been on for a little over a year).. - Thankfully my Cardiology Team is pretty great and especially the Nurse (Jane) with my Cardiologist is infinitely patient as we've definitely had to do a lot of tweeking, testing, adjusting, re-testing, re-adjusting with the Coumadin dose. Honestly I don't even really get annoyed with this med as I am just grateful to (for the most part) be off the 2x daily Lovenox injections.
When INR is below 2.0 (2.0 and above is a somewhat safer range, my ideal range with the 2 mechanical heart valves is 2.5-3.5) then Cardiology adds back the twice daily injections. In these cases I end up having to re-test again later the same week BUT again it's still better than being on Lovenox every day 2x daily forever! I'll find some positive in the difficulty of this med =)
PCP Coumadin Mngmt:
My Primary dr., also has been a great help in the Coumadin/INR mngmt as has my Infusion Nurses - the 'Care Everywhere' system which allows my Providers at any given health system in WI (so Dr.Simpson at Dean can see Dr.Earing's Cardiology records at CHW and he can see her and other of my Providers records at Dean, UW, etc.). This means when Dr.Simpson orders the INR (She has a standing order the INR blood draws) which I then get done when getting accessed for Infusion, she automatically gets the result (as do I on MyChart). She'll typically msg if she has any concern + I call and leave a msg for Cardiology + Jane calls or emails to let me know what if anything I need to do with my dose and when to test again. Maybe sounds complex but this set up works really, really well!
Humira Study - Good Teams
Lastly Dr.Polgreen from the Humira Study called earlier to check in on how things are going, work out arrangements for the beginning of Febr when we'll both be traveling to the same (WORLD) Mtng and I also will have to dose that wk with Humira. She'll be driving down to SD so offered to just bring the drug w/her and we'll meet up that Tues of the mtngs.
For study purposes she gathered some info on any changes/issues going on and other related study questions. I have to say though she and her Study Coord., + other Team members have been really good to work with! I guess I knew this to some degree as Dr.Polgreen has always been a great resource and always willing to answer my questions or questions my Neuro Endocrine dr had and I know a lot of MPS Families that really like her but it's still always nice when your working with a Team and they go out of their way in little or big ways to make things a little easier!
It sounds like per an email from my main contact at Sangamo that the Rare Disease Mtng at the NIH is going ahead. They are still working out details about my speaking but Cristeen just said Sangamo would work with me on what would be needed before the mtng (March 1st). Seems should be an interesting day. I'll try to share the schedule for 3/1 in the next update if I remember.
Will try to update after tmrws Peds Neurosurgery Appt or soon.
Thanks for stopping by,
Erica
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