02-24-09 Update
Been a while since I’ve written an update! That was intentional, in my January appointment, it was determined that I’ve officially failed the second of the “biologic” drugs, the injections and that I need to be moved to the i.v. infusions. However, the infusions require pre-authorization, so I wanted to be sure there were no glitches before writing anything! The pre-auth process is a tad tedious. It would be anyway, but I’m now covered by the same company that owns the company I work for. They’ve got plenty of preventative measures in place to make sure that employee data isn’t easily accessed, but it makes the process a little more cumbersome than normal.
Finally, last week we received the approval and they immediately scheduled me for three “loading” doses. Infusions are only given on Tuesdays in my doctor’s office – they require a special nurse and she’s only there Tuesdays – so I was lucky to get on today’s schedule. I went today at noon for the first infusion. I’m immensely grateful to the infusion nurse, Nicole. She’s a sweetheart and made the process a lot easier. She called last week to go over everything and answer all of my questions, but she made sure to go over things again today to make sure I hadn’t thought of any other questions. She also provides her patients with her cell and home numbers, so we can get in touch with her if necessary. She had a little trouble finding a vein to start the i.v., which is nothing new for me. Unfortunately, whenever I have labs run, they have to pull the blood from my hands, the veins in my arms just aren’t real swift. I’ve found an amazing number of lab techs are hesitant to use the hands, mainly “because it hurts” – um, yeah, but it’s hurting ME, not them, go figure. I always manage to get the kid that looks so young, I’m half expecting them to bust out the Fisher-Price “My Little Phlebotomist” kit, so I guess the hand is scary when you’re that inexperienced! Nicole tried to avoid the hands but stuck my arm and couldn’t get it, looked for a few more spots and finally had to give in. I thought she was going to cry by the end and it honestly didn’t hurt me that badly, no more so than the original attempt in the arm did! So I ended up with the i.v. in my right hand, which I’m sure will suck more tomorrow as it starts to bruise, but I’m not overly concerned about it.
The doctor came in during the infusion to do my normal exam, which pretty much ended the same way as all exams do – “it’s out of control”. My hands are actually not as bad as they had been, but my feet/toes are ridiculously swollen and deformed. My shoulders and hips are also in on the action. My left shoulder has become so painful that the pressure of my seatbelt is enough to make me want to scream some days. During my January appointment, she went ahead and did a cortisone injection in it, to get it to calm down some. Unfortunately, the relief lasted all of three weeks, which I half expected. She warned me when she did it that because the underlying disease is so out of control, this wasn’t going to be a permanent fix; it would only give me temporary relief. At that point, though, I was willing to go for temporary!!! I would’ve liked to have had my hips done at the same time, but the areas in which I’m experiencing the most pain are inaccessible to her in a normal office setting. I’m a little more reluctant to go through a full outpatient procedure in order to get three weeks’ relief, so I’ll deal with them later.
She’s put me on a different anti-inflammatory medication, one I’ve been on before and have gotten relief from. Not as much relief as with the steroids, but we’re working hard to keep me off of those, they’re just not a long-term solution. I was switched off this med because there was a concern that I was having a very, very minor reaction to it, but I’m willing to take the chance and try it again - the reaction wasn’t even bad enough for me to notice it, it was something that caught the attention of my PCP and made her go “Huh, I wonder…”
The three “loading doses” take place in more rapid succession than my normal doses will. I have my second infusion two weeks from today and my third will be four weeks after that. By mid-April, I’ll have all three on board and will *hopefully* be starting to feel some relief. I’m told it takes at least until that third dose, but sometimes longer, before it starts to really kick in and make a difference. I’m really hoping to be a wunderkind and have it kick in earlier! The disease is really kicking my butt these days, I’m so exhausted and in so much pain. Plus, I’ve been working a lot of overtime, so that’s not helping. The running joke is that I’m incredibly pale and have raccoon eyes because of the dark circles under them. I’ve gotten used to the look, not quite a fashion statement but that’s okay. The doc says that’s all due to the disease being out of control and that once we get some semblance of control, I should start to feel better in that department too. I sure hope so!!!! We’ll know soon enough.
It’s hard to know in the back of my mind that I’m running out of options while also maintaining an optimistic outlook. It’s a struggle every day, but I just keep trying to tell myself this one will be the one that works!! I’ll post another report when I’m a little further into treatment and actually know something. That’s it for now!
Finally, last week we received the approval and they immediately scheduled me for three “loading” doses. Infusions are only given on Tuesdays in my doctor’s office – they require a special nurse and she’s only there Tuesdays – so I was lucky to get on today’s schedule. I went today at noon for the first infusion. I’m immensely grateful to the infusion nurse, Nicole. She’s a sweetheart and made the process a lot easier. She called last week to go over everything and answer all of my questions, but she made sure to go over things again today to make sure I hadn’t thought of any other questions. She also provides her patients with her cell and home numbers, so we can get in touch with her if necessary. She had a little trouble finding a vein to start the i.v., which is nothing new for me. Unfortunately, whenever I have labs run, they have to pull the blood from my hands, the veins in my arms just aren’t real swift. I’ve found an amazing number of lab techs are hesitant to use the hands, mainly “because it hurts” – um, yeah, but it’s hurting ME, not them, go figure. I always manage to get the kid that looks so young, I’m half expecting them to bust out the Fisher-Price “My Little Phlebotomist” kit, so I guess the hand is scary when you’re that inexperienced! Nicole tried to avoid the hands but stuck my arm and couldn’t get it, looked for a few more spots and finally had to give in. I thought she was going to cry by the end and it honestly didn’t hurt me that badly, no more so than the original attempt in the arm did! So I ended up with the i.v. in my right hand, which I’m sure will suck more tomorrow as it starts to bruise, but I’m not overly concerned about it.
The doctor came in during the infusion to do my normal exam, which pretty much ended the same way as all exams do – “it’s out of control”. My hands are actually not as bad as they had been, but my feet/toes are ridiculously swollen and deformed. My shoulders and hips are also in on the action. My left shoulder has become so painful that the pressure of my seatbelt is enough to make me want to scream some days. During my January appointment, she went ahead and did a cortisone injection in it, to get it to calm down some. Unfortunately, the relief lasted all of three weeks, which I half expected. She warned me when she did it that because the underlying disease is so out of control, this wasn’t going to be a permanent fix; it would only give me temporary relief. At that point, though, I was willing to go for temporary!!! I would’ve liked to have had my hips done at the same time, but the areas in which I’m experiencing the most pain are inaccessible to her in a normal office setting. I’m a little more reluctant to go through a full outpatient procedure in order to get three weeks’ relief, so I’ll deal with them later.
She’s put me on a different anti-inflammatory medication, one I’ve been on before and have gotten relief from. Not as much relief as with the steroids, but we’re working hard to keep me off of those, they’re just not a long-term solution. I was switched off this med because there was a concern that I was having a very, very minor reaction to it, but I’m willing to take the chance and try it again - the reaction wasn’t even bad enough for me to notice it, it was something that caught the attention of my PCP and made her go “Huh, I wonder…”
The three “loading doses” take place in more rapid succession than my normal doses will. I have my second infusion two weeks from today and my third will be four weeks after that. By mid-April, I’ll have all three on board and will *hopefully* be starting to feel some relief. I’m told it takes at least until that third dose, but sometimes longer, before it starts to really kick in and make a difference. I’m really hoping to be a wunderkind and have it kick in earlier! The disease is really kicking my butt these days, I’m so exhausted and in so much pain. Plus, I’ve been working a lot of overtime, so that’s not helping. The running joke is that I’m incredibly pale and have raccoon eyes because of the dark circles under them. I’ve gotten used to the look, not quite a fashion statement but that’s okay. The doc says that’s all due to the disease being out of control and that once we get some semblance of control, I should start to feel better in that department too. I sure hope so!!!! We’ll know soon enough.
It’s hard to know in the back of my mind that I’m running out of options while also maintaining an optimistic outlook. It’s a struggle every day, but I just keep trying to tell myself this one will be the one that works!! I’ll post another report when I’m a little further into treatment and actually know something. That’s it for now!
Labels: arthritis, ra, Remicade, rheumatoid
posted by Amanda @ 11:26 PM
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