the_rck

We got back the additional genetic testing results to see what analgesics are the best match for me. The results are not particularly surprising except that there are a couple of things that are supposedly good that I’ve have problems with. My psychiatrist recommended that I share the results with my primary care doctor pretty much immediately. I will probably wait until after the holidays because I don’t expect that she’d get the message before the 2nd anyway.

I have 'reduced efficacy’ with all of the opioids that I’ve ever been given and major issues with meperidine (Demerol) and methadone (both have reduced efficacy *and* high serum levels meaning that lower doses are required. Methadone also has a considerably higher risk of side effects for me). I haven’t ever heard of any of the ones that are supposedly safe, genetically speaking— buprenorphine, buprenorphine/naloxone, naltrexone, and tapentadol.

I’m heterozygous for a mutation called 118A>G on the OPRM1 gene. That means 'moderately reduced analgesia with standard opioid doses.'

As far as NSAI, the only one considered safe is Toradol which I’ve reacted badly to. Naproxen is listed as having 'moderate' gene-drug interactions. Ibuprofen, Celebrex, and Voltaren (and something called Mobic which may or may not be a NSAI. The category is merely labeled as 'non-opioid'), all have major interactions. Celebrex and Voltaren actually have FDA warnings that they’re bad with my specific genotype.

So I guess it makes sense that I’ve turned to naproxen, out of all the NSAI, as the least evil. Of course the only type of pain it reliably helps with is menstrual stuff. It does zero for anything else, and I’ve mainly taken it because, if I don’t, doctors refuse to consider my pain real.

In the non-opioid category, carisoprodol and Flexeril are listed as safe. I took carisoprodol for years. It didn’t noticeably do anything at all except freak out any new doctors that I saw. Stopping it also didn’t do anything noticeable. Flexeril, I’ve tried twice. Once, my pain got better, and once, my pain got worse. I think that that may have had more to do with my pain in the latter case being a somatic expression of my anxiety levels than anything else. I’ve had problems sometimes with things that relax me in terms of my body responding by getting tenser in response to me feeling like I’m losing control (the first two or three times I had alcohol were unpleasant in that way, and I’m pretty sure that’s the problem I had when they gave me valium for muscle spasms).

I’ve been poking at the Arthritis Foundation website as a starting point for researching alternative treatments for the arthritis in my hands. A lot of the things listed either have really sketchy research or are firmly in the not-safe-for-me category. SAM-e looked really appealing to try until I hit the part about stomach and intestinal issues and about not being safe with MAOIs (I’m not currently taking one, but I probably will be in the not too distant future). I’m so very sensitive in that direction that I certainly would get them. Then there’s DMSO that’s not safe for people with asthma and flaxseed that’s not safe for people with hormone positive reproductive cancers (which is new information for me). Fish oil is probably safe, but when I tried it, a few years back, I was constantly burping vile tasting stuff.

I’ve got several things that I want to research further. I will probably try topical capsaicin if we can find it without going out of our way. It may or may not help, but I’m a lot less worried about something topical and that I know what it is and where it comes from. Eating stuff with capsaicin gives me nasty reflux, but I’ve never had issues from touching it. I’ll test it somewhere other than my hands, though, because, if I get skin irritation, I don’t want it there. I may also try ginger supplements (though I want a bit more information about them). That’s another case of me actually knowing what it is. I don’t have a bad reaction to dietary ginger, so that seems potentially safer to experiment with.

The night time braces felt good for my hands at first. I really liked the support for the painful part of my hands. Sadly, my left hand started going numb after about fifteen minutes of me lying on my right side. I’m pretty sure that it was a combination of the position with the brace. I’m just not sure that it’s worth trying to figure out (and get used to) a different way of sleeping given that my hands don’t hurt at night or first thing in the morning. Also, I can’t put the dratted things on without help. I can take them off, but I can’t put them on.

The day time braces give less support than I want. I think that the sizing is right— or at least okay— in the wrist and general hand width, but it’s all kind of loose around my thumb which is where it’s supposed to be most supportive. There’s no way to tighten that, either. There’s also a strap that goes between my thumb and the rest of my fingers that digs in and hurts. That gets worse the longer I wear the dratted things.

So I want some hybrid of the two. I can’t do things like brush my hair or pick things up with the night braces, but they feel better. I can do a lot with the day braces on, but they don’t give me any real help. Not ideal.

Damn. I just got my copy of the genetics report for cancer risks. It doesn’t actually tell me if I have the 'likely benign' PALB-2 variant that my sister has because they don’t bother reporting anything that they think is benign. One of the points of this exercise was to find out whether or not I have that specific variant. I could have variants on every gene tested, as long as someone in the US had labeled it benign, and never know.

::sighs:: I’ll see if the genetics counseling people have that information and if I can pry it out of them. I kind of suspect they won’t want to tell me.

Got a call this morning from the Cancer Center genetics people. Everything they tested came back 'completely normal.' I'm assuming, given family history, that there's some genetic factor related to colon cancer that we have but that isn't yet known to be a problem.

But still, good news.