Chronic Pain members - Welcome, please introduce yourself
Welcome to the new Chronic Pain group.
I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.
Why not take a minute and introduce yourself.
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@marield65 Marie, I'm glad you had a nice birthday dinner, but sorry that afterwards you were hit with so many aches, pains, etc. I hope tomorrow will be a better day for you.
Is your pool an outdoor pool? Thankfully the one I go to is indoors. They do have an outdoor one also but you have to pay extra to be a "premier member" which is not worth it to me. I hope you manage to go to your pool this week, it is so helpful, especially if you have a good group people in the classes also.
JK
@hazelblumberg, you have a few options for getting the testing done. I'm not positive that all Mayo locations do the testing, but you can check. Often times, PGx tests performed in the clinical setting are more expensive, and sometimes insurance doesn't cover the costs. (My first sets of tests done onsite at Mayo Rochester cost ~$2,900 for 9 tests and insurance refused to cover them.) With that said... my second set of tests (22 tests for $249) done via mail order by OneOme.com. OneOme is a Mayo Clinic company located in Minneapolis. Your doctor just needs to go to the site, do some reading, and get their contact info. S/he contacts them, and then they call you to confirm your mailing info and to get a credit card payment. They then ship the test kit to you, you swab your gums, and you send it back to them via the FedEx shipping container that that provided to you. After they process your sample, they contact your doctor and you can also download a copy of your report from their web site. The only thing missing if you do it this way is a little bit of counseling where someone explains how your system processes meds, what the tests find, etc.
To prep your doctors to learn more, ask them to google "cytochrome P450". (All doctors learn about this in college, but not in enough detail to use in practice. Based my experience, internal medicine PCPs and cardiologists seem to be more familiar. Pharmacists, especially younger ones, seem to know the most.) The cytochrome P450 liver enzyme system is how our bodies metabolize most drugs, many of the toxins that enter our bodies, and some of our hormones (especially steroids). This is the liver enzyme system where many polymorphisms are found.
(Basically, we all have this system in us, and it is packed full of enzymes. Each enzyme is like a gene that has two alleles... one from your mom and one from your dad. Sometimes, these alleles have genetic mutations, also known as polymorphisms. These polymorphisms prevent us from metabolizing some medications as intended.
Some good info to read / videos to watch:
• http://individualizedmedicineblog.mayoclinic.org/2016/12/06/pharmacogenomics-the-rx-for-success/
• http://mayoresearch.mayo.edu/center-for-individualized-medicine/pharmacogenomics.asp
The reports I received from Mayo and OneOme are essentially the same. The cover page lists medications that I need to avoid and also use with caution. The next page lists medications that should be okay for me to take. The subsequent pages explain each polymorphism or if I tested okay for the gene.
For the total of 23 genes I've had tested, I have 13 polymorphisms, but most people probably just a few. I am probably very rare, but having these polymorphisms is not a rarity, so this is very valuable information to have as an individual that can also help your family. With the knowledge was gained from my tests, we now know that my daughters absolutely need to be tested eventually. I was ill for 12 years due to prescription meds that I don't properly metabolize, drugs like Nexium, Cymbalta, Metoprolol, cold medicines that contain DM, and more, but because of what we know now, we can prevent this from happening to my daughters.
My Mayo pharmacist said he wishes everyone would be able to get this testing done, and I agree. There are some hospitals in the Virginia area that now offer this as newborn testing.
@marield65, please see my post to @hazelblumberg as well regarding pharmacogenomic testing.
Thanks so much for all the information! My primary care is a DNP, and she's interested in holistic treatment. She does traditional and nontraditional medicine, and I love her. This is probably something she's familiar with. I'll talk to her about it. The great thing for me is that my psych meds--for clinical depression and panic/anxiety disorder--work really well. I've been on the same combination of meds for over seven years now, and I'm delighted with how good I feel. And weirdly enough, the TMJ pain has left me in peace for about a week now. I have no idea why. I think that, as soon as I sent away for a TENS unit, the pain quit! 🙂 I'm sure it'll be back, but I'm enjoying the vacation from the pain.
Hi @contentandwell, this could happen for a few reasons... the enzyme system in your body that metabolizes PPIs is housed in your liver (called cytochrome P450). Some people, like me, have genetic polymorphisms that prevent me from properly-metabolizing medications, and I don't properly-metabolize any PPIs because the same enzyme is used to metabolize all of them. With that said, even if you don't have polymorphisms of this enzyme, you could experience issues for other reasons. For example, all PPIs actually inhibit the very enzyme the drug needs to be metabolized. (Inhibit means they slow the enzyme's productivity down; it makes you metabolize it more slowly.) On top of that, some PPIs are worse inhibitors than others. For example, you may have felt worse when taking omeprazole than the other PPIs. Plus if you were taking any other drug that inhibits that enzyme, it will further slow down the metabolizing. Then if you were to have a polymorphism like I do, it makes it even worse. Due to my polymorphism, long-term use of PPIs (12 years) made me gain weight and also incredibly sicker over a long period of time. Unfortunately, most doctors are not knowledgeable of the nitty-gritty of this enzyme system, so when this is happening to their patients, they don't know why.
@hazelblumberg, I'm glad your working with a professional who is open-minded; sometimes these people are hard to find! Enjoy your pain-cation!
I love my nurse practitioner! She's always got a new goal, and she's always learning. The last big goal was to get her doctorate in nurse practitionership, and now that she's achieved that, I wonder what she'll be up to next. She's about my vintage (I'm 64), and I just hope she doesn't retire any time soon! She is wonderful! So, if anyone's in the Tallahassee, Florida, area and looking for a primary care, just let me know, and I'll be happy to give you her name. She's excellent.
@hazelblumberg, "my vintage" <-- I love that! You just make a western New Yorker smile!
kELLy, Hazel Blumberg, this is Marie from Marield65. Do mean that the second test was exactly like the first one but more testing, and the price was that much cheaper? That would be great. I have had some awful experiences with medications, one of which I was in a Delirium state for 4 days in the hospital from the pain med after my knee replacement for them giving me DiLaudid. Marie
Hi @boourbonman, so it sounds like you do not live in Florida. Is that correct? How does it work do you have to get a doctor there first before you can get it? Please let us know if it works. If you don't mind me asking what where you taking before as far as your mess? And where do you live now?