Category Archives: Flexeral

A Week in Colorado

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The past week I’ve been in Colorado. I was there for a week running a National GRTS Users conference out of the EPA Region 8 building (which is gorgeous by the way) and then Andrew flew in and we got to spend Saturday-Tuesday morning with his brother, Austin, and Austin’s wife, Mariah. I really like Colorado. It’s so much fun! And a lot of things happened that I need to update on. First off, there was the immense amount of jaw pain that I reported on. There was also the issue of the random red splotches, bumps, and hard spots that were occurring at my injection sites, each time looking worse. So, I finally decided to call the Rheumy on Saturday and leave a voicemail on the emergency line- because I was positive I was having an allergic reaction- big red, hot, painful bullseye splotches- like the one at right. So I called the emergency line and got a hold of a woman. I started to talk about how I had only been on Enbrel for three weeks and she cut me off. She asked me for the name of my doctor. I told her and she said back are you calling the right place? There’s no doctor on my list with that name. I repeated it and spelled the name and said I had been coming for a month. She replied with well we can’t help you if he’s not on the list. Then she read through the list of doctors (all doctors at the same location) and I repeated yes, my doctor is newer perhaps he’s not on your list, she yelled back well we can’t help you if he’s not here, you must have the wrong place. Then she hung up. I would like to pause here and reflect if I may.

It is already hard enough to feel like you call your doctor ALL the time to complain about some new awful source of pain or ask or double check to see if something is normal. It is equally hard to gain the courage to call and try to explain the amount of pain that you are in thinking all the while that your doctor doesn’t necessarily believe you. After all, auto-immune diseases are weird. There’s no flashy broken bone or torn ligaments (well sometimes there are but not always). Add on top, a woman who is downright horrible. It was a bad experience. I let it go until Monday and then called back to talk to my doctor. Long story short, he said he doesn’t want to give up on the Enbrel yet and that I should try topical Benadryl. So I added that to my repitoir, along with a prescription for Flexeral (not happy about this one) for when TMJ acts up.  I also moved up my next appointment. So that’s that.

In other news, Denver and Boulder were a ton of fun! I love the mountains, the people, the food, the views, the beers. Just awesome. I didn’t get as much of a vacation as I had hoped for (too much grad school stuff to work on) but I did get to sleep in one morning and do some fun things and best of all, hang out with a lot of great people. Here are some of the things we did…

On Friday night before Andrew arrived, I went with Austin and Mariah to a Halloween Party!
My costume was: Everything but the kitchen sink

And it SNOWED during my GRTS Conference— and we had an early dismissal!!

And we went for a nice walk around  Coot Lake where their dog, River, swam!

We went to a playoff game for the Colorado Rapids!

And of course, we went to a brewery. This one’s the Tasty Weasel Tasting Room at Oskar Blues

As you can see, we did a bunch of fun things!!! We also tried out a local breakfast burrito shop, I ate sushi (! don’t worry just veggie sushi), and a couple other hot spots. We played in a toy store on Pearl Street and Andrew and I dressed up as Scooby Doo and Scrappy Doo. We had a great time and I wish we were still there!!!!

90 Year Old Syndrome?

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As you are aware, the previous three posts have all been in regards to my joint and overall body issues, particularly the flare ups I’ve been having in my SI joints (located in your hips). Anyway, my appointment with the Rheumatologist went well and if you’re interested in the tests being done you can read about it here. I’m going to spend a few moments discussing medications. My orthopedist and general doctor had me on Flexeral for a good chunk of time.

Flexeral is a muscle relaxant. While I appreciated the ability to fall asleep in a matter of seconds after I took it, it wasn’t helping with anything. What made it worse was that if I didn’t get to wake up naturally (aka I ALWAYS wake up to an alarm or to Andrew waking me up), it made me a well, bitch. There is really no other word for it. I would wake up in an angry, pissy mood, and nothing or no one could help improve that situation. At first, I thought perhaps I was being a bitch because I was hungry? But no, that didn’t help at all. Only after I had slept for a long period of time did I come back to my “normal” state.

Then there was Percoset. Percoset is a narcotic. You would think it would help, right? Wrong. Percoset did not do anything. I took two at a time and again, while it helped me sleep, it didn’t help with the pain. It simply masked it until the morning. Upside: no bitchy Meghan. Downside: very very sleepy Meghan. Percoset is easy to become addicted to and after going through some of those issues with Percoset and Vicodin and Oxycontin as a result of ankle surgery, I don’t want to go through it again (don’t mistake me, I was never really an addict, it’s just that once I stopped taking them, my body would feel like my skin was crawling). Better not to test it. If it’s not helping at all, why keep taking it?
After seeing my Rheumatologist on Monday, he prescribed Meloxicam for me. Meloxicam is a non-steroidal anti-inflammatory drug (NSAID for short). It’s used to help with pain, tenderness, stiffness, and swelling caused by a variety of things. It has a decent list of nasty side effects, including heartburn, which is why I was told to also buy some Prilosec. The doc told me that I should take the Meloxicam and have the tests done and then come back in once all the results were put together so we could discuss next steps. Fair enough. So, I left and went about my day. Well over the proceeding two days, the pain that I experienced was indescribable. I don’t know what it was; the medicine (I doubt it), the fear of having dye injected for my MRIs (probably not), or just a really bad flare up (YES!) but I was miserable. Absolutely miserable. So, on Wednesday, I called my Rheumatologist and explained that the best way to describe was by saying when I try to stand up, I feel like a 90 year old; knees and ankles in pain and swollen, my hips felt like knives were in them, and my lower back and SI area— hurt so bad it took me a few seconds until I could stand up straight. Not. Good.
I knew that the Meloxicam would need to build up in my body, but I asked if there was anything else he could suggest that would be ok to take with the Meloxicam. I was thinking he’d tell me ibprofen or something like that. No such luck. He prescribed a short course of Prednisone.
Prednisone is a steroid used to help with inflammation. It has horrendous side effects including fat face (moon face), weight gain, congestive heart failure, and shortness of breath. Seriously, check out this list of side effects. Anyway, lucky for me it was just a short course. I wasn’t thrilled about it but I asked him what he thought; he said that the short course would help us figure out if it is inflammation.
I have been on prednisone for a day. The first day you take 6 pills throughout the day, the second day, 5; and so on and so forth until the 6th day with one. While I have no experienced any side effects (nock on wood; fingers crossed) and while the pain isn’t completely gone, I feel like this is actually helping. I do not feel anywhere near as bad as I did on Tuesday when I walked onto the metro train and fell into Andrew, crying because I hurt so bad. My mood has actually been better today. So, here’s hoping that I keep NOT experiencing side effects and I keep experiencing increased pain relief!
So, that’s my recap of drugs that I’ve been on so far for my body aches. Hopefully we’re headed in a good direction; I am staying optimistic!
My question to you all is have you ever spent a lot of time trying to get a diagnosis? Have you had to go through a variety of medications? Did you ever find one that helped you out?