When life turns left

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You know when you’re just rolling along and life decides to turn left when you’re not looking? A couple of things have happened to me health wise that has me saying WTF? (pardon the acronym).

So the first thing is my left knee. Or hip. Or something in that general area. I’ve been putting up with some issues for about six weeks or so and finally decided things were getting worse instead of better. I was pretty sure it was my left (replaced) knee because, well, that’s where it hurts. So I went to my ortho guy (who’s great) and after exams and prodding and turning things this way and that and taking Xrays, then taking more Xrays, the doctor says he thinks it’s not my knee but my hip. My main issue is that I’ve lost the ability to rotate my leg inward (think crossing your legs). It not only hurts, I physically can’t do that any more. This makes getting dressed, getting in and out of cars, etc. etc. very troublesome and very painful. However, it seems that this action is controlled not by the knee, but by the hip. The IT band that goes from the outside of the hip to the knee is definitely involved, but the Xrays of my hip are also showing some concern. So yes, I get to go to physical therapy for four weeks, but I also am having a radiologist-guided steroid injection into the hip joint. (Can you say, “ouch!”?)

Here’s the kicker: If the steroid injection provides significant relief, we know it’s the hip, right? Well, if it truly is the hip, I may be looking at (another) hip replacement sooner rather than later. So instead of getting a little love for my knee, I may be looking at a chunk of titanium for my left hip. I’m scheduled for the injection the middle of next week, so we’ll see how it goes. If the injection doesn’t help, then we go back to square one. If the injection does help, well, then I guess I’m scheduling major surgery (again …). This will be my fifth joint replacement in 11 years.

The second thing, in some ways, is even more of a left turn for me. I’ve always wondered whether or not I really have RA. Or something else. Or nothing. (Kind of like the little girl thinking she’s really a princess instead of a child of boring suburbanites.) All of my labs (including RA factor) have always come back totally normal, so there is no strong indication of RA, although there is no question that I have some kind of autoimmune/inflammatory arthritis. My latest treatment plan (of the 10 I’ve been on) has basically quit working and, in discussing this with my rheumy last week, she hit upon the fact that I get a lot of skin-related issues when my symptoms act up or treatments stop working, including a recent bout of inverse psoriasis (which contributed to my virtual friend and fellow advocate, Lene Andersen getting a hospital stay). So while I don’t have plaque psoriasis or even ongoing regular psoriasis, my doctor is considering that I might actually have psoriatic arthritis (PsA).

So why is this a bad thing?

Well, there are two issues for me. The first is that having a new diagnosis opens up different classes of drugs. Since I’ve basically failed on all but one of the RA-approved medications, having something new to try should be a good thing. Except that those drugs are all injections. Under Medicare, injections are covered under the Part D pharmacy plan which has copays rather than the Part D medical that generally covers infusions at no cost to me. Under my current plan, MY yearly cost of the cheapest PsA medication would be $152,000. In January, when I can change plans, it would still be $6,000 a year or $500/month. And since I’m on Medicare, I can’t participate in any patient assistance programs. So basically, I can’t afford a new diagnosis. (Well, okay, I can afford the diagnosis, just not the treatment.)

The second thing, to me, is somewhat more difficult for a variety of reasons. A few years ago I retired early due to RA. Not having kids, my career had always been a huge part of my identity. I was well known in my field and I had an executive position in an industry leader. All of a sudden, that was gone. I suddenly became “just” an RA patient. I’ve embraced that role, becoming more active in advocacy and working with both patient groups and pharma companies to support the patients’ voice in the healthcare space. If I no longer have an RA diagnosis, I lose that identity, too. I can still represent the autoimmune/inflammatory disease community, but I will no doubt lose the ability to continue with the various RA-specific patient advisory boards and communities I’ve come to enjoy so much. I can build relationships in the PsA groups, but I have more than 11 years invested with RA. Somehow I feel like I’m being laid off. (Is that weird? Yes, I know it is, but, is it really weird?) My rheumatologist did a flurry of tests that will hopefully provide some clarity on the situation. I usually see the results in a few days, but the lab says it will be another couple of weeks before I hear. In the meantime, I’m back on injected methotrexate and continuing on my biologic which might or might not be working (oh, joy).

So here I am. In the left-turn lane. With my blinker on. Waiting for the green light so I can go somewhere new. Or not.

These diseases make life difficult in all kinds of ways, including ways you don’t expect. I hope your life is far from difficult. Thanks for checking in.

 

 

Words I thought I’d never say …

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I’m a pretty outspoken person, but there is a list of things I never expected I’d say. “I hope it’s a flare,” is certainly close to the top of the list. A friend of mine with RA had tweeted that some unusual pain/soreness after her workouts that had been going on for a while. I responded that I hoped it was “just” a flare.

I explain myself in my recent post at RheumatoidArthritis.net, here: https://rheumatoidarthritis.net/living/pain-progression/

Thanks for checking in!

Just Color Me A Star

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I was thrilled recently when I, along with a real rockstar, Stephanie Aleite (https://theyoungfaceofarthritis.com/, @theYoungFace_RA), were asked to provide patients’ perspectives for an upcoming health feature on Lifetime television about Rheumatoid Arthritis. The feature will first air Thursday, September 12 at 7:30 am EST/PST with a second airing on October 30 at the same time.

One thing I’ve learned is that there’s nothing like a camera to highlight your fat and your flaws. Fortunately, this show also highlights the realities of living with and managing RA.

If you can’t tune in, I’ll have links to a YouTube version of the show to share with you once it airs. I can’t thank Sanofi Genzyme and Regeneron enough for including me in this important project!

 

 

Disregarding the Largest Healthcare Population

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Most of my doctors are in a large medical complex here in Dallas. Every time I visit I see elderly people struggling with trying to figure out the parking payment kiosks, the login kiosks at the doctors offices and labs, the iPad check-in devices, and all the other technology gadgets that are supposed to make healthcare more efficient, but that hinder access to the largest population of healthcare consumers.

In a previous post, Are RA Patients Getting the Message, I talk about the wonderful channels of information now available — such as podcasts, Twitter chats, even YouTube videos — but how the people who need this information the most aren’t getting it because they aren’t familiar with the technology. The digital divide is not only alive and well, it’s getting wider. And while many seniors become proficient with virtually connecting with friends and family, it can be a struggle to understand new applications like doctor’s portals — which vary from doctor to doctor.

These are just minor examples of how the people who use healthcare the most (the elderly) are being disregarded in healthcare. Unfortunately this phenomenon extends throughout the healthcare continuum.

You would think that drugs that would be used by a large part of the population would include that population in clinical trials. A recent New York Times article talks about how older patients are specifically excluded. It makes me wonder how data from these trials can be valid in real-world use.

The Population Reference Bureau (based on the U.S. Census Data) states the number of Americans ages 65 and older is projected to nearly double from 52 million in 2018 to 95 million by 2060, and the 65-and-older age group’s share of the total population will rise from 16 percent to 23 percent.

Let’s face it, if we’re lucky, we’re all going to get older. We need to stop marginalizing this population and think about not only HOW to include and support them, but the great benefits that will be achieved when we do.

And Life Goes On

There is a saying about life happening when you’re making other plans. (This is attributable to both cartoonist Allen Saunders and musical artist John Lennon.) That’s been me lately and why I haven’t been posting much. Thought I’d take a minute to just update you on my “real” life lately.

Warning: if you’re not up for a lot of whining, just ignore this post.

  • My husband wrecked my new car that had less than 300 miles on it and had just gotten the license plates put on. The other driver (who my husband claims was at fault) is under-insured and, after assuring my husband that she was fine at the scene of the accident, is now claiming injury and has hired a lawyer. Note that our auto policy does not cover marriage counseling.
  • We considered selling our single-family home and moving to a lower-maintenance condominium. After a month (and lots of $$$) of landscaping, painting, garage cleaning, etc. and weeks of searching/visiting potential properties, we’ve decided not to move after all. But at least I’ve got a great-looking yard and clean windows and garage.
  • My online accounts were hacked. I have records of where people in Beijing were logging in to my Microsoft account. All my major accounts that use my email address were impacted. This includes Microsoft, Apple, Amazon, and Walmart. The attack went on for days. I’d get passwords reset and the next day, my accounts were breached again. I now have two-factor authentication, an account authenticator app, and credit freezes with all the credit reporting agencies in place. I haven’t seen any unauthorized credit card charges or other activity, but every day I feel like I’m looking over my shoulder.
  • My rheumatologist and I made a plan where if my experiment with CBD oil didn’t work out, she would start me on a low-dose of injectable methotrexate. She was going to wait until I reported back before calling in the prescription. Instead, her office immediately sent in a prescription for oral MTX (which I won’t take) and folic acid. Had I picked up prescriptions, I would have refused them. However, my husband picked up a prescription and “did me a favor” by picking up the two that were ready for me. Cost me $50 in copays for medication that I won’t use. As you can tell, I’m still upset so I haven’t contacted her office to ask for the injectable prescription, although I need to because I can tell my biologic isn’t doing the job any more.
  • My husband and I went to Las Vegas to celebrate his birthday. He contracted cellulitis which, given his history of triple-bypass surgery, can be very serious. (Fortunately we have a PCP in our home town of Dallas who was responsive by email …)

I’m sure there is more stuff that has distracted me and I’m even more certain there have been lots of blessings in my life as well. At some point I’ll get all the aggravations cleared out and will be able to count them again.

Thanks for listening to me whine and thanks for checking in.

CBD Oil: What I Know Now

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First my apologies to those of you who are lucky enough to live in a state where marijuana and/or CBD products are legalized because you probably already know all of this. I’m hopeful that this will useful for people like me who are trying to get their bearings on the subject. This post is broken into three sections: research, the experiment, and the results.

A few weeks ago I began researching CBD oil. Two things had converged. The first: Texas has legalized the sale of CBD oil. The second: while my current treatment plan is still working, I don’t think it’s working quite as well as I’d like. I’ve been off methotrexate for about a year and rather than going back to it, adding in something different, or perhaps changing treatment plans yet again, I thought a side journey into a more natural-based product might be worth a try.

Research

I’m a researcher by nature so I spent some time doing some research on my own as well as talking to my primary care physician (PCP), my rheumatologist, and my compounding pharmacist (who happens to carry CBD oil in the pharmacy). One of the first things I learned is because of the legal issues surrounding marijuana in the US, there is not a lot of US-based research available. Therefore, many US-based healthcare professionals haven’t been trained in this area and/or are not well-equipped to discuss the topic with their patients. However, it’s a matter of a lot of discussion in the medical community and there has been research done in other countries, so there is some information out there. Both my PCP and my rheumy said patients had been showing up with their bottles of CBD oil to discuss the situation. I won’t say my doctors gave their blessing, but neither objected, knowing that I would find a good-quality product from a reliable source and use it responsibly.

In addition, have friends who not only have used CBD oil for some time to relieve musculoskeletal pain, they believe in it strongly enough they also sell it. They provided invaluable first-person insights and further agreed to be lab rats when I sent them THC test strips to see if anything showed up on a drug test. (It didn’t as the product they use does not have the THC element.)

I won’t bog down this post with the long list of articles and research sources I investigated, but there are a couple I want to include. I passed these along to my healthcare team and they found them useful — not only for themselves, but for their other patients. The first are from Consumer Reports. The first link is basically a primer on CBD which gives you a background on what the terms means (pure vs. broad spectrum, COA, etc.), what to look for (and avoid), what to ask, etc.: https://www.consumerreports.org/cbd/how-to-shop-for-cbd/

The second, also from Consumer Reports, is a resource page about Cannibis and CBD — everything to laws to children/pets to alternates to opioids, etc. It’s a great, one-stop shop for a lot of good information: https://www.consumerreports.org/cbd/cannabis-and-cbd-guide/.

The final source is a side-by-side comparison of some CBD/hemp extract products. It was actually prepared by Recept, one of the products on the list (and sold by my friends), but the list appears to be accurate based on the spot-checking I did. It’s at least a great place to start if you’re starting to investigate these products: https://secure.primemybody.com/hemp-oil-review.php

I think it’s important at this point to note that some CBD products contain trace amounts (legally <0.3%) of THC, the “high” substance in marijuana. Depending on quality controls, this “trace amount” may or may not be accurate. This may linger in your system and may show up positive on a drug test such as, for example, employment or after a car accident. Even if marijuana is legal in your area, your employer can still retain the right to fire you if you fail a drug test and civil and legal consequences for driving while having THC in your system can be substantial.

The Experiment

My final research stop turned out to be the start of my experiment. I had to go to my compounding pharmacist anyway and had the opportunity to spend some time talking with the pharmacist. She explained why she carried the brand of CBD oil in her pharmacy and also that her son uses it (along with therapy) for his severe PTSD. There are several reasons why I decided to purchase the oil then and there but a great deal of it had to do with the fact that I could walk out with it then and there.

The “normal” dosage was one dropper of oil under the tongue 2-3 times a day. I starting using 1/2 a dropper about mid-morning, then a full dropper at bedtime, so I was not quite using a full dose.

The Results

The results were quite promising. I can’t say the deep pain disappeared during the day — I wasn’t using the full therapeutic dose and it’s my understanding it takes some time for the full effect — but I felt better overall. My sleep improved dramatically. I slept deeply and well. I didn’t toss or turn or suffer from “painsomnia”. My restless legs calmed down as did night sweats. I had great dreams and woke up fresh and rested without any trace of lingering hangover (like I occasionally have with prescription or OTC meds). I was greatly encouraged.

The morning of the second day of the experiment, I noticed itchy skin. I had been snacking on peanuts. While I’m not allergic to peanuts, I am allergic to tree nuts and sometimes there is cross contamination in the products and I get itchy if I eat too many. So I stopped eating the peanuts and paid attention to anything else that might be a problem. On the third day, I noticed a few spots on my arms and legs and eliminated all but the most basic foods. On the fourth day, I had a full blown rash on my arms and legs. On the fifth day, I stopped the CBD oil and the next morning the rash was immediately, visibly better. I started a prednisone taper and haven’t had any CBD oil or the rash/itchy skin since.

AAAARRRGGGGHHHHH!!!!!! Just when you think you’ve found something that works.

The CBD oil I tried was a broad-spectrum product which, along with CBD, includes some of the other hemp compounds — as opposed to “pure” CBD oil that is processed to eliminate everything but the CBD. I have a bit of sensitivity to various green/growing things and I suspect that one of these compounds triggered that sensitivity. I haven’t ruled out another experiment using the “pure” CBD oil to see if I can get the benefits without the itch.

The product I used was Charlotte’s Web “original formula” in chocolate mint flavor (which tastes like a really bad marijuana brownie — not that I’d know). The “regular” formula is 43 mg/dose and it does have trace THC. There is both a less- and more-potent version and different flavors. The 1 fl. oz. bottle was $145. I’m sure I could have shopped somewhere besides a compounding pharmacy and found better pricing. You can buy smaller bottles of the less potent formula (30 mg) online for much, much less. There are all kinds of brands and forms — from vapors to balms and everything in between with a wide range of pricing to match. The Consumer Reports article is a good place to get oriented to all of this.

I was incredibly encouraged and now discouraged. But I hope my grand experiment was helpful (or at least interesting) to you. I now have to figure out what’s next.

Thanks for going along on this experiment with me and, as always, thanks for checking in.