The 2nd dose of the Humira was a little delayed (by a week due to a issue with the lab company that comes out and does the labs needed for this study) but that was finally re-arranged earlier this week after a few delays and I was able to give myself the 2nd dose of Hmura (or placebo) Weds night. The 3rd dose will then be in 2 weeks from now. I am genuinely glad to be doing this study and equally glad how optimistic or hopeful my Team is that it may help..
I have to be honest I'm curious with the Headaches and not entirely sure how it could help those but for now just living day to day with this issue as they have slowly been coming back... but again day to day on all things MPS and even days when it's extremely frustrating (not every day just some days =) ) it's all a balance and I refuse to let any of it stop my keeping on living.
I guess if I hope anything from this study it will be that the Humira might help the spine inflammation and that in turn help us the times when we need to re-position the shunts (perhaps help calm the arachnoiditis and in turn secondary scarring) or just plain help spine in general. If it helps joints in general and my Physical Therapist and I be able to keep the work he does lasting longer term (what he does already works amazing) would be really, really great! to. Overall I am just glad to be in this on the drug (or placebo) now and that the dr (Dr.Polgreen) running it is a really great dr to work with as is her Study Coord. Alison, the Study Coord., has been really great overall and this past 2 wks especially sorting out the lab stuff and Fed Ex shipment related issues. Makes being in a study a TON easier when your working with a good team!
I know for the Humira study in general Dr.Polgreen has funding for 3 more Pts so I am glad to see it being able to help more Pts in my community and to see final results. I think (but can't remember for sure) they are giving a talk on this study at the upcoming WORLD Mtng which if so should be interesting. To date I believe there have been 5 Pts so far besides myself.
Heart - Heart Rhythm:
Just a really quick update on this, the Amiodarone which we started a few months ago.
Heart Rhythm is still some off but certainly better than it had been - ironically this improved right about the time we did the last Heart monitor but I won't complain. I will say it's SUPER annoying when it still does it's runs of (seems like) excessive skipped beats and weird beats but atleast it's less than it was pre-Amiodarone. I do think the Ivabradine still helps actual heart rate (keeping it slower).
Endocrine and PCP have been comitoring thyroid levels as the Amiodarine can mess with this and per labs done several times now it appears the med may be having some affect but 2 of the last 4 lab checks done the levels where back in a reasonable/good range.
Headaches - Pressure.
These 4 or so months since we did the last shunt surgery where I felt really, really good and I felt pretty darn human (as human as my body lets me anyways =D ) have been really nice. It is never any less of a bummer when the headaches (pressure) comes back and other symptoms in turn also come back. I'm so not ready to deal with this again and the endless having to (basically?) argue that I'm not making the symptoms up, that I really don't want to be asking for help (I haven't bothered calling my Neurosurgeons office yet, in reality his Secretary and Nurses are very nice but I just can't stomach having to try to plead/argue my case yet). I feel discouraged writing this (not a feeling I try to wallow in much) and have just been ignoring it as much as possible but I also know it's affecting other things. SOO FRUSTRATING are these shunts and more than that the pressure!!!! I thankfully have a Team of Providers who are good and even my Neurosurgeon, he's good it's just he totally doesn't seem to get that I never want to be asking for his help and in my case, my MPS makes it much different than the vast majority if not all of his other complex cases. Like always frustrating! I am glad Dr.Bragg cont's to help but man I miss her being here!
RegenX-Bio / Sangamo Studies:
This post is already getting way to long so i'll just say I am working with both companies and will try to update next time. Both studies seem promising to our MPS I Community though!
Running for Rare Team - 2018 Runner
I am paired up with my runner for the 2018 Boston Marathon. I don't know if i'll make it out to the actual marathon this year but I am hoping so. I am in the process of trying to coord., appt with my Metabolic Genetics dr (Dr.Bodamer) out there for that same wknd but still have to figure out travel and all the expense that goes with that wknd. It seems per Dr.Bodamer's Secretary he may be out of the office that wknd so we'll see. **** Update on this Dr.Bodamer is out of the office so I really don't know what to do yet. I want to go but don't know about the costs and then I'd have to go back out again likely sometime this year to see Dr.Bodamer as I really want to see whats going on with the Whole Exome testing results and other studies he has mentioned. Just unsure at this point.
Honestly I have been considering asking my PCP about switching back to a Genetics dr. locally - I'm not sure about this but will talk to my PCP and it's possible I could still work with Dr.Bodamer but just need to figure things out I guess.
The National MPS Society has medical travel assistance program and PSI also helps some but it's still some I have to pay out of pocket so need to figure that out and what the total cost would be this year given would likely mean 2 trips.
I DO really want to but we'll see! The biggest is hotels out there for the marathon can be extremely expensive. Dr.Bodamer wanted me to do Neuropsych testing w/1 of his drs (testing that's routinely done in us MPS I Pts., I've done it at UofMn many times over the years but not in recent years) but that dr apparently only sees Pts certain days and I don't want to stretch out my time out there even longer at even greater expense whenever I do make the actual apt sometimes this year.
My runner this year though seems so neat, we've really hit it off; She works at Genzyme so knows some of the folks I know and of course other runners from the Team. In general the Marathon wknd is just a weekend that can't quite be explained! :)
Lots to figure out I guess.
Will try to update soon. I scheduled to see my Primary dr next week I believe it is so will maybe figure some of this decisions out with her.
Thanks for stopping by,
Erica
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