It has been a bad week, pain and fatigue-wise. I'm not going to whine and cry about it (anymore!). I've done enough of that. So, we'll just go over what happened at the doctor.
Last Monday was another appointment with my rheumatologist. I went in ready to fight. Okay. Not fight, just ready to make sure he understood how much worse things had gotten for me lately. I had a list ready. It was a pretty long list. He listened to every complaint, asked additional questions, and was just generally wonderful. After examining my joints (aka torture) he said the words we were hoping for- it's time for biologics. In the end, we switched my anti-inflammatory, increased the methotrexate dosage, and prescribed Humira.
All good news, right? Except that now I have to wait. Again. There is a whole insurance process that has to be completed before I can get the medication. It's such a backwards, convoluted, and bizarre process that I won't even bother trying to explain it here. The important thing is that it can take a couple weeks before the whole process, including my case being presented to the insurance review board, is complete and I know whether or not I have been approved. And apparently, in some cases, you won't even know you've been approved until the insurance company calls you to tell you that your giant refrigerated box of medicine is on it's way. I guess we'll see...
The other thing I learned at the rheumatologist last week happened when I glanced at the doctor's notes and noticed the words "severe case" underlined three times. He had told me before that he would say my case was moderate, so I guess that means I've been given an upgrade! Exciting, no? No. Not really. In truth, I would much rather be moderate. Even better, how about mild?!
That's why I'm so anxious for the Humira, in spite of it's hefty $1500 a month price tag. It gives me a chance at regaining at least some of my life. I might be able to hold a book and read it! I might be able to wash my own hair! Dress myself! Make dinner for my family! Pour my own tea! Any of these things would be a major improvement right now and Humira is my best shot at getting that back. I am also aware that there are some utterly terrifying side effects and that it's even possible that this medication won't work for me. TNF blockers don't work for everyone, and even when they do work, they often stop working after a while, necessitating a medication change. All of it is worth it to me if there's a chance of being able to live again.
Let's hope they're fast.
Sunday, April 29, 2012
Friday, April 13, 2012
Playing Catch Up
A lot has been going on lately. Some good, some bad, some... eh. First, the good. Part of the reason I haven't updated is because I spent some much needed time with friends recently, huddled together, cursing the snow, and have an amazing time. It means a lot to have friends that wonderful and understanding. They are the best and I already miss them terribly.
Now, onto to the RAD related stuff. The elimination diet was a complete failure. I was so hopeful for those couple of days! But after those days, everything was just the same as always. There was never any improvement and even upon reintroduction of foods, there was no difference. I was disappointed not to find something I could do to make the pain more tolerable, but happy to be able to eat whatever I want again. Oh well. It was worth trying, I think.
Also, after two weeks at the highest possible oral dose of methotrexate, which left me horrendously ill 3 or 4 days out of the week, I called my doctor explaining that spending roughly half of the week nauseous and/or vomiting was not really my idea of fun, I was switched to the injectable form of methotrexate.
So, once a week, my amazing husband gets to- I mean, has to jab me with a needle full of sickeningly yellow liquid. I am incredibly thankful that he is able to do it for me because there is no way my fingers would be able to function well enough, especially first thing in the morning, to do it myself. The good thing about the move to the injections is that I have absolutely no more nausea. That was a welcome relief. So, at least my Wednesday's are no longer spent mostly in the bathroom. It does leave me incredibly exhausted, though. It's a really weird feeling, actually. Somewhere between a really bad hangover (not that I have personally ever experienced such a thing, of course!) and that hit-by-a-truck-and-I-can't-even-move feeling you get with like a really bad flu. Still, it's a lot better than being sick for half of the week!
My main problem with the MTX is that it doesn't actually seem to be doing anything for me. I should be showing at least some signs of improvement by now and instead I have been getting progressively worse. This week has been really hard. I have been so fatigued all week, I spend hours of every day fighting to keep my eyes open. The amount of pain I have had this week has also increased, leaving me feeling pretty sad and discouraged.
I have 10 more days until my next appointment with the rheumatologist. If things continue they way they have this week, it could very well feel like the longest 10 days of my life. I hope we can come up with a new plan this time and it's not just more keep taking the MTX and see what happens. Hopefully, I'll be moving on to bigger, better medication.
As a side note, maybe it's just my bad attitude, but I swear if I see one more blog post or comment from someone regarding dealing with the chronic pain and fatigue of RAD saying to "think of Dory in Finding Nemo and just keep swimming" I just might come completely unhinged.
Now, onto to the RAD related stuff. The elimination diet was a complete failure. I was so hopeful for those couple of days! But after those days, everything was just the same as always. There was never any improvement and even upon reintroduction of foods, there was no difference. I was disappointed not to find something I could do to make the pain more tolerable, but happy to be able to eat whatever I want again. Oh well. It was worth trying, I think.
Also, after two weeks at the highest possible oral dose of methotrexate, which left me horrendously ill 3 or 4 days out of the week, I called my doctor explaining that spending roughly half of the week nauseous and/or vomiting was not really my idea of fun, I was switched to the injectable form of methotrexate.
So, once a week, my amazing husband gets to- I mean, has to jab me with a needle full of sickeningly yellow liquid. I am incredibly thankful that he is able to do it for me because there is no way my fingers would be able to function well enough, especially first thing in the morning, to do it myself. The good thing about the move to the injections is that I have absolutely no more nausea. That was a welcome relief. So, at least my Wednesday's are no longer spent mostly in the bathroom. It does leave me incredibly exhausted, though. It's a really weird feeling, actually. Somewhere between a really bad hangover (not that I have personally ever experienced such a thing, of course!) and that hit-by-a-truck-and-I-can't-even-move feeling you get with like a really bad flu. Still, it's a lot better than being sick for half of the week!My main problem with the MTX is that it doesn't actually seem to be doing anything for me. I should be showing at least some signs of improvement by now and instead I have been getting progressively worse. This week has been really hard. I have been so fatigued all week, I spend hours of every day fighting to keep my eyes open. The amount of pain I have had this week has also increased, leaving me feeling pretty sad and discouraged.
I have 10 more days until my next appointment with the rheumatologist. If things continue they way they have this week, it could very well feel like the longest 10 days of my life. I hope we can come up with a new plan this time and it's not just more keep taking the MTX and see what happens. Hopefully, I'll be moving on to bigger, better medication.
As a side note, maybe it's just my bad attitude, but I swear if I see one more blog post or comment from someone regarding dealing with the chronic pain and fatigue of RAD saying to "think of Dory in Finding Nemo and just keep swimming" I just might come completely unhinged.
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