Today, I received the first dose of Orencia. Yeah! The insurance approval came through on Wed July 30 late in the afternoon. But the infusion nurse was out of the office on Thursday and Friday, so when I called on Friday to check the status of the request, the "office" nurse thought it was approved but not positive. I found out, for sure, when I got there this morning.
The first three doses are administered at two week intervals. The next doses are August 19 and September 3. Comprehensive exams begin September 9. Today, I was told that Orencia tends to have a slow start -- not exactly what I wanted to hear. How long? It may take 3 months to really tell the difference. The infusion nurse said a lot of her patients have told her they could tell the difference in 6 weeks.
side note: A long time ago, I thought I would be an MD. When I finally relented to the call that was so powerful, I said to God, "Fine. If I can't be an MD then I want to be a PhD." The timing and money fell into place for the PhD all the way up to this point.
So, at this point in the intersection of PhD and arthritis, I am consciously choosing to keep trying to study and adopting the mantra, "The God who brings you to it will bring you through it."
Showing posts with label medical. Show all posts
Showing posts with label medical. Show all posts
Monday, August 04, 2008
Saturday, July 19, 2008
when the theory applies
The Theory
Excerpted from Ask the Expert (While this refers to psoriasis and psoriatic arthritis, I have Rheumatoid Arthritis and the facts here are also applicable to me.)
"All 3 anti-TNF medications (etanercept [ Enbrel ], adalimumab [ Humira ], and infliximab [ Remicade ]) have been shown to be amazingly effective and safe in the treatment of psoriasis and psoriatic arthritis. However, a few important anti-tumor necrosis factor (TNF) realities must be appreciated, all gleaned from a worldwide experience with these wonderful new medications over these past 5 years: [huge snip of of points 1 and 2 which also apply but aren't the particular focal point for this post]
All of the anti-TNFs may "run out of gas" to one degree or another after 2-3 years, and some type of medication switch or dose change is needed. "
The Application
Two years ago I maxed out the dosage while losing effectiveness for Humira and switched to Remicade. Now I am 0.5 mg/kg short of maxed out on dosage for Remicade and I am very clear that it is no longer effective. (My methotrexate has increased and I am very clear that it is providing as much relief as it can. But it's kinda like a 4-cylinder car trying to do the work of an 8-cylinder truck.) My next dose is scheduled for the first week of August. Depending on insurance, I may receive a new medication by then (probably Orencia). I am so clear about the lack of effectiveness of the Remicade that I called my RA's office on Friday to make sure the paperwork with the insurance company is being done. I rarely follow up with them because they are so efficient. That phone call really was a reflection of my anxiety.
Let me elaborate. The anxiety is driven, in no small part, by the fact that I am scheduled to sit for comprehensive exams for my PhD in September. A delay in the paper work or approval by insurance means a deteriorating ability to study which is already compromised by "brain fog." "Brain fog" is one of those things that you usually learn about from others taking methotrexate not the doctors, although some of them do tell you. Brain fog tends to occur close to the dosage day and your brain is slower, better with recognition than recall, and sometimes stuff is just gone. As you move away from the dosage day, clarity returns. With the increase of the methotrexate, I've had an increase in side effects that my body had pretty much adapted to on the lower dosage so I've had a return of brain fog that I was kinda used to not having. And, further more, since the Remicade is failing, I am noticing the drop off of the relief provided by the methotrexate toward the end of the week. So when I don't have brain fog, I have pain -- which isn't so conducive to thinking either.
So now, already overwhelmed with the task of organizing and studying for comps, I have added brain fog, pain, and fatigue. So, am asking for you to pray for these things: 1) that the paperwork is completed in a timely manner and the insurance approves the switch for the first week of August; 2) that I can set aside the "overwhelmedness" long enough to get some focus for the organization needed to study; and, 3) that I can actually have productive study time.
And applications for study buddies are open now.
Excerpted from Ask the Expert (While this refers to psoriasis and psoriatic arthritis, I have Rheumatoid Arthritis and the facts here are also applicable to me.)
"All 3 anti-TNF medications (etanercept [ Enbrel ], adalimumab [ Humira ], and infliximab [ Remicade ]) have been shown to be amazingly effective and safe in the treatment of psoriasis and psoriatic arthritis. However, a few important anti-tumor necrosis factor (TNF) realities must be appreciated, all gleaned from a worldwide experience with these wonderful new medications over these past 5 years: [huge snip of of points 1 and 2 which also apply but aren't the particular focal point for this post]
All of the anti-TNFs may "run out of gas" to one degree or another after 2-3 years, and some type of medication switch or dose change is needed. "
The Application
Two years ago I maxed out the dosage while losing effectiveness for Humira and switched to Remicade. Now I am 0.5 mg/kg short of maxed out on dosage for Remicade and I am very clear that it is no longer effective. (My methotrexate has increased and I am very clear that it is providing as much relief as it can. But it's kinda like a 4-cylinder car trying to do the work of an 8-cylinder truck.) My next dose is scheduled for the first week of August. Depending on insurance, I may receive a new medication by then (probably Orencia). I am so clear about the lack of effectiveness of the Remicade that I called my RA's office on Friday to make sure the paperwork with the insurance company is being done. I rarely follow up with them because they are so efficient. That phone call really was a reflection of my anxiety.
Let me elaborate. The anxiety is driven, in no small part, by the fact that I am scheduled to sit for comprehensive exams for my PhD in September. A delay in the paper work or approval by insurance means a deteriorating ability to study which is already compromised by "brain fog." "Brain fog" is one of those things that you usually learn about from others taking methotrexate not the doctors, although some of them do tell you. Brain fog tends to occur close to the dosage day and your brain is slower, better with recognition than recall, and sometimes stuff is just gone. As you move away from the dosage day, clarity returns. With the increase of the methotrexate, I've had an increase in side effects that my body had pretty much adapted to on the lower dosage so I've had a return of brain fog that I was kinda used to not having. And, further more, since the Remicade is failing, I am noticing the drop off of the relief provided by the methotrexate toward the end of the week. So when I don't have brain fog, I have pain -- which isn't so conducive to thinking either.
So now, already overwhelmed with the task of organizing and studying for comps, I have added brain fog, pain, and fatigue. So, am asking for you to pray for these things: 1) that the paperwork is completed in a timely manner and the insurance approves the switch for the first week of August; 2) that I can set aside the "overwhelmedness" long enough to get some focus for the organization needed to study; and, 3) that I can actually have productive study time.
And applications for study buddies are open now.
Wednesday, April 16, 2008
checkup
The Entertainer had a six month asthma checkup on Monday.
She started wheezing when she was months old. She has had a pulmonologist (lung dr) since she was 13 months old. When we first starting going to "the clinic," it was behind the ER in the closest Children's hospital. Several years ago, the hospital expanded to have a separate "clinic" building.
I lost count of the times we drove to the ER when she was too small to tell me what was wrong. I've watched her blood oxygen levels rise with breathing treatments, held her, rocked her, and read books to her during breathing treatments. I have an inverter for the vehicle so power to run a nebulizer is always available.
There was a point when the medicine her pulmonologist thought would be most helpful was not available in the form we needed so we used a different form and measured the medicine into another mix to create what she needed. She has always taken multiple medicines daily just to breathe normally.
For the second visit in a row, we have reduced medicines!!! Six months ago, we dropped one out of the daily regimen that was mostly supportive in nature and have not noticed any differences. This week we changed to a different daily maintenance medication. We're in a trial period to see how it works but that we are in a place to even think about changing one of the "big dogs" is almost amazing. I have worked hard to get her asthma well controlled so that she could choose to do what she wanted to. We haven't had that all the time. But we've had very well controlled asthma for about a year now. I never thought we'd see the day when she had a real possibility of "growing out" of her asthma. While she may not, the fact that she is not continually buffeted by the changing weather, high humidity, a simple cold, nominal exertion, or laughing too hard is a major step toward asthma being a consistent 4th or 5th thought instead of the first or second thought.
That's a good day at the doctor.
Thanks be to God and modern medical technology.
She started wheezing when she was months old. She has had a pulmonologist (lung dr) since she was 13 months old. When we first starting going to "the clinic," it was behind the ER in the closest Children's hospital. Several years ago, the hospital expanded to have a separate "clinic" building.
I lost count of the times we drove to the ER when she was too small to tell me what was wrong. I've watched her blood oxygen levels rise with breathing treatments, held her, rocked her, and read books to her during breathing treatments. I have an inverter for the vehicle so power to run a nebulizer is always available.
There was a point when the medicine her pulmonologist thought would be most helpful was not available in the form we needed so we used a different form and measured the medicine into another mix to create what she needed. She has always taken multiple medicines daily just to breathe normally.
For the second visit in a row, we have reduced medicines!!! Six months ago, we dropped one out of the daily regimen that was mostly supportive in nature and have not noticed any differences. This week we changed to a different daily maintenance medication. We're in a trial period to see how it works but that we are in a place to even think about changing one of the "big dogs" is almost amazing. I have worked hard to get her asthma well controlled so that she could choose to do what she wanted to. We haven't had that all the time. But we've had very well controlled asthma for about a year now. I never thought we'd see the day when she had a real possibility of "growing out" of her asthma. While she may not, the fact that she is not continually buffeted by the changing weather, high humidity, a simple cold, nominal exertion, or laughing too hard is a major step toward asthma being a consistent 4th or 5th thought instead of the first or second thought.
That's a good day at the doctor.
Thanks be to God and modern medical technology.
Tuesday, July 24, 2007
The Monday after Vacation
While on vacation, I received several phone calls from doctors' offices, specifically, the Rheumatologist and the Primary Care. I had already called the Primary Care doctor to set up a physical because of Rheumatologist's concerns over slightly elevated blood sugar levels. The earliest appointment I could get for that visit? Sept 11. However, after one of the nurse practitioners in Primary Care's office saw the lab results sent by Rheumatologist, a call was placed and message left for me on the machine asking for a quick response. I talked to the person on Friday and saw the Primary Care today.
I waited forever to see Primary Care, not really surprising. I really like my doc alot. I wish the office was managed differently so I would not sit and wait so much.
After waiting forever, having a decent amount of conversation, I got to learn how to use one of these.
oh. joy.
First, I forgot to put the strip in the machine first so I got an error message for using a previously used strip. Damn. Another stick.
Second, even though I have the minimal amount needed monitor, I didn't get enough very easily. So I "milked" and finally got enough.
Then, as I was taking everything apart to put the sharp part in the red box, the protective cap slipped off and the sharp part stuck my thumb. I had plently of sample then! Why couldn't that have happened for the finger? So by the time I was actually done with the first test, I had three spots instead of one.
At least the test two hours later, after supper, was a one stick test.
I'm on a new learning curve.
I waited forever to see Primary Care, not really surprising. I really like my doc alot. I wish the office was managed differently so I would not sit and wait so much.
After waiting forever, having a decent amount of conversation, I got to learn how to use one of these.
oh. joy.
First, I forgot to put the strip in the machine first so I got an error message for using a previously used strip. Damn. Another stick.
Second, even though I have the minimal amount needed monitor, I didn't get enough very easily. So I "milked" and finally got enough.
Then, as I was taking everything apart to put the sharp part in the red box, the protective cap slipped off and the sharp part stuck my thumb. I had plently of sample then! Why couldn't that have happened for the finger? So by the time I was actually done with the first test, I had three spots instead of one.
At least the test two hours later, after supper, was a one stick test.
I'm on a new learning curve.
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