Archive for category Drugs

Drug Day and an Important Enbrel PSA

When I first got on medication for RA, I took my methotrexate the day it was prescribed (at one of the most depressing and sober happy hours I’ve ever been to) and my Enbrel as soon as it was approved by insurance and shipped to me. I was so desperate for relief, I didn’t think about what day of the week would be most convenient to take 8 tiny pills that make me exhausted and slightly nauseous. Or which day would be best to remember to take my shot, meaning I needed to be by my refrigerator with privacy, alcohol swabs and an ice pack.

At any rate, I recently decided to maximize fun by cramming it into a weekly drug-fueled night of excitement on what is already the best night of the week: Monday. Just kidding.

Monday nights for me now consist of trying to get a kick-ass workout in after work – usually weights and hip-hop dancing. The endorphins boost my mood and working out makes me feel powerful. That helps combat the feelings of weakness that go along with being dependent on drugs, the confusion I sometimes feel when I swallow pills that I know are both a cure and poison, and the wimpiness I feel when I cringe giving myself a shot.

After that, I make myself dinner and settle in for a night of relaxing on the couch. This is only made slightly less relaxing by icing my leg while my shot warms up, then giving myself my injection of Enbrel. Dinner is only slightly less appetizing when the second course is 8 pills of methotrexate. I find that eating a lot before and a little after taking my pills helps with the nausea.

I also find that some good, distracting TV helps. 🙂

Anyway, that’s my drug day routine. What’s yours? What makes it more tolerable for you?

Also, for those of you that made it through my drug day rant, I have an Enbrel PSA: according to one of the Enbrel support nurses, the FDA has now approved Enbrel to be unrefrigerated (stored at room temperature) for up to 14 days. The only caveat is, once you take it out of refrigeration, it should remain out and must be used within 14 days. For anyone who’s tried traveling with Enbrel (especially on long overseas flights after FAA regulations no longer allow flight attendants to store passenger drugs in refrigerators), this is awesome news.

I was trying to find the post with my Enbrel travel story, but I either never typed it or it’s poorly tagged. I’ll tell it quickly here. When I was flying to Spain I had to take a three hour domestic flight, followed by a four-hour layover in Miami, an 8+ hour flight, a taxi ride, and not being let into our apartment for two extra hours. Needless to say, my ice pack thawed during my layover and my Enbrel travel case was soaked.

This meant tracking down plastic bags of ice in Miami. The best the flight attendants could do was give me a bucket of ice that turned into a cold, wet bucket of water that inevitably got all my carry-on items wet because it had to be stored under the seat but only fit beneath my feet. In all that travel time, the only place that allowed me to use their refrigerator to store my syringes of Enbrel was the cafe in Spain where we killed time. After that fun experience, this news is VERY WELCOME.

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A Rash New Symptom

I am long past overdue for a blog post! Things have been crazy in my world. My grandfather passed away and my sister had her baby seven weeks early (both are doing well). Meanwhile my works been busy (in a good way) and I’ve been fighting a cold ever since getting back from the funeral two and a half weeks ago.

To top all that off, I’ve been experiencing my strangest symptom yet: hives. I woke up a week ago with huge hives covering the back of my right thigh and a small part of the back of my left thigh. It’s evolved from being lumps, to a big red blob, to small bumps, to now taking on a purplish hue.

I went to my rheumatologist on Friday, and he ruled out the rash as a sign of Lupus. He also didn’t think it was a bug bite or related to my Raynaud’s/Chillblains. He told me to skip my Enbrel this week and follow up with a dermatologist if it was still around Monday, but of course they all seem to be booked through the first week in December. So that leaves me guessing and Googling at what could be the cause. A sudden onset allergy to Enbrel? A random reaction to my cold? Some bizarre complication of RA?

Have any of you experienced anything like this? My solution for now is to go to urgent care if it gets worse, and to do my best to ignore it until it gets better.

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This is Just Ridiculous

Well, my running and office life have once again been sidelined by my health. For the fourth time since getting my wisdom teeth out in June, I’m sitting at home, swollen, bored, exhausted, and on antibiotics and pain meds (oh, and off my RA drugs to let the antibiotics do their job).

The first time was being swollen for about a month after getting the teeth removed. The second two times were when blood started collecting in my right jaw – a hematoma or blood tumor. That happened twice, people! Each time involved making an incision in my gumline/inner cheek under local anesthesia, draining the blood, undergoing antibiotics, and giving it time and rest to make sure it healed.

I’ve been totally fine and hematoma/jaw swelling free for five blissful weeks.

Then, this last weekend I had subtle, sporadic pain in my left ear. I was busy having a blast at a wedding, so I ignored it. Sunday night, I had some pain in my lower left jaw. I noted it, but went to bed.

Then, Monday morning I woke up to one half chipmunk cheek. Whhhhhhyyyyyyy?????

If only I were this cute.

Of course, the oral surgeon who I had been doing follow up care with was out of the office Monday, so I went to a new dentist who ruled out a tooth infection and put me on antibiotics.

I spoke to my marvelous rheumatology nurse at least four times, trying to determine if it could be related to Rheumatoid Arthritis. The short answer is, yes, it could, but it probably isn’t.

So Tuesday I went back to my oral surgeon. He ruled out a hematoma or an infection, but numbed me up, sliced in, drained the area, “smoothed” the bone, and added a “drain” in my gumline to prevent fluid from building in my jaw again. Fun stuff, let me tell you. Apparently, he believes my body was reacting to a stray bone fragment left over from getting my wisdom teeth removed. Great, so could this happen spontaneously for years??

Since Tuesday, I’ve been taking my antibiotics, managing the pain with Percocet and IBProfen, and WAITING for the swelling to go down so I can look and feel like myself again. I’m still waiting.

I’m going in to see my oral surgeon tomorrow to hopefully get the drain out and get more answers. In the meantime, cabin fever is setting in because I’m supposed to be relaxing. Though good for blog posts (as in, I actually find myself writing them), this is pretty bad for sanity. :/

I’d like to ask you RAers if anyone has experienced lower jaw swelling related to their RA? What was it like and how was it treated? 

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Invisible Illness Week

Alright, officially Invisible Illness Week was Sept 9-15th, but better late than never, right?

1. The illness I live with is: Rheumatoid Arthritis
2. I was diagnosed with it in the year: 2012
3. But I had symptoms since: probably 2010
4. The biggest adjustment I’ve had to make is: listening to my body and taking it easy when I’m in pain or fatigued.
5. Most people assume: they know what Rheumatoid Arthritis is, but they’re usually thinking of Osteoarthritis.
6. The hardest part about mornings are: I move a little slower than I used to. AND remembering to take my vitamins.
7. My favorite medical TV show is: Scrubs
8. A gadget I couldn’t live without is: Oxo Good Grips kitchen tools and my grip jar opener
9. The hardest part about nights are: when fatigue equals a busy mind and insomnia, not sleep.
10. Each day I take 6 -14 pills & vitamins. (No comments, please)
11. Regarding alternative treatments I: will try anything. Personally, yoga, acupuncture and changing my diet (no gluten, less dairy and sugar, more veggies) help a lot. If I could afford it, I would get massages more often.
12. If I had to choose between an invisible illness or visible I would choose: I’m a private person, so probably invisible.
13. Regarding working and career: I’ve kept my career, but I’ve embraced (and have been blessed with an office that embraces) a flexible schedule. This lets me start my mornings slower or work from home when I need to.
14. People would be surprised to know: how bad my symptoms were before I went to the doctor. I was really good at the “grin and bear it” denial technique.
15. The hardest thing to accept about my new reality has been: that this disease is chronic. When I was diagnosed I thought I would be the exception to the rule and go into remission within the year. This hasn’t been the case.
16. Something I never thought I could do with my illness that I did was: RUN a marathon.
17. The commercials about my illness: feature older people golfing and make me roll my eyes.
18. Something I really miss doing since I was diagnosed is: going out for a night drinking with my friends. This is a double no for me because the drugs I take (methotrexate) are hard on your liver and I try to be kinder to my body these days.
19. It was really hard to have to give up: alcohol (see above) and high heels. I still indulge in both on occasion.
20. A new hobby I have taken up since my diagnosis is: blogging!
21. If I could have one day of feeling normal again I would: go-go-go ALL day long – run, climb, dance, party. I’d wear high heels. I’d stay up all night. I wouldn’t even give a passing thought to “paying for it” the next day or even week.
22. My illness has taught me: I’m stronger than I think and everyone is going through something, so be patient and kind with yourself and others.
23. Want to know a secret? One thing people say that gets under my skin is: “But you’re too young to have arthritis!” If this were true, I wouldn’t have it and hearing this just makes me feel ashamed and misunderstood.
24. But I love it when people: ask me sincere questions and want to know more about RA.
25. My favorite motto, scripture, quote that gets me through tough times is: I have two I come back to: “Never, never, never give up.” – Winston Churchill; and “So it goes.” – Kurt Vonnegut
26. When someone is diagnosed I’d like to tell them: It’s tough, it’s scary, it sucks. It will get better. You will feel better than you do today.
27. Something that has surprised me about living with an illness is: the supportive community of people I’ve met (mainly through online support groups).
28. The nicest thing someone did for me when I wasn’t feeling well was: just let me cry and then ordered me Chinese food in bed and hung out all day, watching funny TV shows.
29. I’m involved with Invisible Illness Week because: I think awareness of invisible illnesses is important to funding research and finding cures.
30. The fact that you read this list makes me feel: honored and vulnerable

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Biomedical Implant to Treat RA

Bio-electronic implant to control RA

Biomedical Implant to Treat RA

SetPoint Medical is working on an alternative treatment for Rheumatoid Arthritis: a small device implanted in your neck that sends out electrical patterns to regulate your immune system. Definitely something to watch.

Check out yet another article on this new treatment.

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Bills, Bills, Bills….

World gonna be so cruel to you, world gonna be so mean. I’ll catch you when you’re fallin’ through. I’m gonna throw on you, like a trampoline.

That song made me feel better today, so I wanted to share it.

I got back from an awesome, but non-budgeted vacation only to be greeted by an unexpected $600 medical bill. Yippee!

After rounds of phone calls with nurses, insurance agents and billing people, I found out that the reason for the bill is because my in-network specialists billed insurance as “outpatient hospital visit” rather than “in office visit.”

The problem is that my in-network specialist rate of a $50 copay apparently only applies under certain codes. And this particular hospital didn’t know the magic words. That leaves it as being charged against my deductible, a way higher amount. My insurance claimed they can’t do anything about (United Healthcare BTW).

So, I went back to billing at the hospital, who told me that it was state law that they bill it that way. I called bullshit – the other rheumatologist that I see also has an office in a hospital, and I’ve never been charged more than my copay (they’re in the same state, in case you’re wondering). Billing claimed there was nothing they could do except offer me a payment plan.

So that leaves me hounding the nurses to resubmit the bills. I feel bad about this. Nurses already have a million things on their plate, but should I really be penalized $600 because they chose to use one code over another, equally applicable code? I haven’t heard back from them yet.

The whole mess is frustrating. I went to this doctor because they were in-network. I triple checked the UHC website to make sure of it, so that I wouldn’t be charged out-of-network rates.

A system that requires you to jump through hoops, call and clarify every little visit, procedure and test before it’s done, speak to insurance about which codes to use, and then hound nurses to make sure they’re filing bills under the codes that work for your particular insurance policy is broken. And bureaucratic BS.

Now don’t get me wrong, I’m not ungrateful. My insurance allows me to be on medication for less than $500 per year, when it would otherwise be costing me about $32,000 per year (Enbrel and methotrexate), and therefore is something I couldn’t live without. But that doesn’t mean the system’s not rife with inexplicable inconsistencies, nonsensical loopholes and traps, and a whole lot of incomprehensible coding and rules.

I don’t have answers for you, I only know Obamacare won’t solve it. Do you have advice or insurance horror stories? I’d love to hear them!

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A Shoe Story

shoesshoes3

This one may be for the ladies, but I think you’ll understand when I say that shoes can be so much more than shoes. They reflect your style, they help define us to the world, and they can change how you walk, strut, and feel about yourself. So where does that leave you when you can’t wear the shoes you want? When you’re stuck with shoes that don’t reflect who you are?

Alright, the shoe story actually starts with my wisdom teeth extraction. I got my wisdom teeth – all four, all impacted – removed back in mid-June. To say healing didn’t go smoothly is to put it lightly.

First off, the initial swelling lasted about two weeks before going down (with one mild dry socket). When it finally did go down, I was ecstatic. The only problem was that the left side of my chin was still pins and needles numb, which is uncomfortable and distracting. Of course, there’s apparently not a whole lot they can do about numbness except wait.

With the swelling down, I jumped back into working out because I’d made a goal to do a sprint triathlon (.5 mile swim, 12-17 mile bike, 3-4 mile run) by the end of the summer, and I was woefully out of shape.

Then fast forward to right before the Fourth of July and suddenly the right side of my jaw was in a lot of pain again. I went to visit my dentist, who at this point was pretty sick of me. He told me to wait it out.

Finally my jaw was so painful and swollen that I made an appointment to see my dentist and a new oral surgeon in the same day. My dentist again told me to wait. So I went to the oral surgeon, who told me that the extraction was so complex, my dentist should have referred me out and never should have attempted it in office. He also said the X-rays that my dentist had been working off of were abysmal.

Well, great. Of course I felt like an idiot, because I had a similar incident with an impacted tooth in high school. My dentist at the time thought that he could do a procedure to reveal and attach a brace to an impacted tooth. Mid-procedure, he leaves me sitting in the dentist chair, awake and bloody with a mouth full on cotton. Turns out he can’t do it, so they cart me away to an oral surgeon to knock me out and finish the operation. I may just have shit luck with dentists.

I ended up switching my care to the oral surgeon, if only because my dentist and I were getting pretty tired of my frequent visits.

Anywho, the new guy was worried my jaw had been fractured during surgery, which turned out to not be the case. He sent me away saying that probably my muscle ligaments had been severed and were having difficulty reattaching because the bone they had been attached to was no longer there. So I went on my less-than-merry way, being told again to just be patient.

But then it got even worse, so I went back to the oral surgeon (bless his soul, aside from the initial consolation fee and the cost of new, more sufficient X-rays, he hasn’t charged me a dime). The OS decided to do a biopsy of my jaw and found out that I had a blood tumor (super gross word meaning that blood has been collecting in my jaw where it shouldn’t have been – also called a hematoma). So… That was really f#*king gross. He had to poke me in a bunch of places inside my cheek with large needles and drain the blood. He also found and extracted two bone spurs, pieces of bone that didn’t get removed during surgery and were trying to work their way out of my jaw. My OS put me on five days of antibiotics.

And here’s where the shoes come in: to cheer myself up, I went shopping. I found myself the cutest shoes and bought them despite not really being able to wear heels because of my RA and their uncomfortably high price. At any rate, in the store I convinced myself that I could wear heels if I wanted.

Maybe heels are a state of mind? Like if they’re cute enough, and well-made (read expensive and Italian), I could wear them. Right? They made me feel feminine and pretty, and I really needed to feel that.

Wrong. Every time I went to wear them, my feet were more swollen than they’d been in the store and it was a blow to my ego. Each time I decided sore feet on top of a swollen jaw wouldn’t make me feel better, but not being able to wear the shoes I wanted to was making me feel worse.

After that I was STILL in pain and swollen, but I guess it was more because of all the needle pokes. A couple days post operation I started getting better and I was seriously soooooooo happy. I danced around my living room beaming.

I went back to some lighter workouts, thinking that maybe I still had a chance at a triathlon in August.

Then, a week later, wham. I found myself back at the oral surgeon’s office, getting a new hematoma drained from my right jaw. Painful, time-consuming grossness. This meant another couple days of recovery and another seven days of antibiotics. Which also meant another week of not taking my RA drugs since fighting infection and restricting your immune system don’t exactly go hand in hand.

It’s been a week and a half of not going anywhere near the gym or my running shoes, trying to keep my blood pressure low, sleeping on my left side only, and trying to keep my head elevated. I’m happy to report that, today, I feel mostly fine and look normal. Yay!

As for the shoes, they met a not-so-happy end. Yesterday, I made the heart-breaking choice to return them, unworn. In the end, I decided that no shoes were better than having pretty shoes mock me from inside my closet. Begging me to choose fashion over comfort.

More than giving up my shoe dream, I had to give up my goal of doing a sprint triathlon this summer. All of these teeth complications have just made it too hard to train. Making the call to choose to give my body a break and room to heal has been hard.

Giving up on goals and dreams is not usually my style. But there’s two ways to look at it: defeat or wisdom. I’m trying to go with wisdom. (Hey, if I can’t feel pretty, at least I can feel smart!)

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My way less sexy, but pragmatic shoes.

 

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Swell, I’m Swollen

This is basically what I look like right now. 😉

You would think that someone with RA would know a thing or two about swelling. Swollen joints pretty much comes with the territory. Well, I got my wisdom teeth out on Friday and now, four days later, I can tell you that I still had a lot to learn about swelling.

First off, for all you autoimmune warriors, the logistics of getting your wisdom teeth out are a little more complex than for the average person. My rheumy had me stop all my RA drugs (methotrexate and Enbrel) one week before surgery to limit the chance of infection. Since RA drugs inhibit your immune system, it can lead to slower healing.

I was due to take my methotrexate again post-surgery on Monday, but due to extreme swelling, I decided not to.

At first, the thought of being off my RA drugs scared the crap out of me. What if I have a flare?? It turns out, your body takes awhile to catch up, so you’re usually OK for a couple weeks off your drugs. That being said, I’m going to start Enbrel back up tomorrow, even though I’m not fully healed.

I had to get four impacted (two severely impacted) wisdom teeth removed and the whole thing took a whopping 3.5 hours. Of which, they apparently had trouble keeping me “asleep”. (I blame my red hair.) Apparently I kept waking up and saying “Ow”.

Luckily I remember only one such occasion. I woke up and said, “What’s going on?” or something like that. They told me they were on the last molar and knocked me out again.

Well, the additive effect of 3.5 hours on three different anesthetics meant I spent all of Friday night throwing up and Saturday completely nauseous.

I thought the worst was over, but Saturday night, my face swelled up like a balloon. Silver lining? I now have photographic incentive to stay in shape. 😉

Now my face is still painfully swollen and I am forever grateful that RA does not (normally) effect your jaw.

When I was a kid, my sister used to make fun of my oxygen/prednisone “chipmunk cheeks”. Now I once again get the honor of that nickname. */Joy!*

If anyone has advice to hasten recovery and get the swelling down, I’d love to hear it!!

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Eww…Wow.

It’s gross, but, then again, so are autoimmune diseases…

BBC – Future – Health – Worm therapy: Why parasites may be good for you
http://www.bbc.com/future/story/20130422-feeling-ill-swallow-a-parasite/4

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Should I Move On?

Dear friends,

For those of you that follow my blog, I am very interested in advice…

As you know, I went to get a second opinion on my rheumatoid arthritis treatment because a family friend’s death illuminated the connection of methotrexate to interstitial lung disease.

Well, I went to a pretty renowned hospital and saw a very nice female (wow, rare!) rheumatologist who is not much older than I am. She was easy to talk to, smart, and, since she works in a research hospital, very up-to-date on the latest RAD research.

And get this, she wants me to try to go off methotrexate and see how I do with just Enbrel. Her reasoning was that a) I have valid concerns about MTX side effects, b) my last two liver tests came back high, and c) why not try it?

Granted, she hasn’t been my doc, so hasn’t seen me before my drug therapy or on bad days (it was a good day when I saw her). But she thought my treatment may be a bit unnecessarily aggressive.

If going off MTX didn’t go well, she talked about putting me on Azathioprine, which I know nothing about, but pulmonologists (lung docs) like better than MTX. Has anyone been on Azathioprine or have thoughts about it?

*It should be said that methotrexate causing interstitial lung disease is quite rare, and in many cases treatable. I am just a little sensitive about this because I had severe interstitial lung disease as a child. My lung doc says that I’m not necessarily at more risk than the average RA patient for developing ILD, but I’d like to play it safe.

But, of course, I’d also like my treatment to work.

I’m scared to death of getting off MTX when my current drug therapy seems to be working pretty well.

I also don’t want to be on MTX for the rest of my life…

My current doc brought me down to seven pills per week from 10 because of my liver, but I know he’d rather see me stay on the MTX.

I feel as though I have to decide on both which doc to go with (you can’t have two rheumatologists, apparently; they’ll just disagree on everything) and which treatment plan. And I feel like I have to decide by Sunday, which is methotrexate day for me.

Finally, how do you even break up with a doc who’s been kind, effective, and accessible? And should I? The new hospital offers more cutting edge care and is bigger, so my rheumy would be consulting with other rheumatologists and pulmonologists. I can also participate in research there. BUT, it’s further from my house and my new doc may be a little less accessible than my current one.

If anyone has advice on how to choose doctors, break up with doctors, or switch treatment plans, I would really love to hear it.

Thanks,

Angsty RAD blogwriter 😉

 

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