I think that my appointment yesterday with Dr. E was a waste of time. On the plus side, I arrived early, and got called in right away...by Dr E himself. This meant that I didn't need to see the nasty nurse!
While he isn't refusing to prescribe Rebif, he is highly suggesting that I switch to a different drug. The reason for this is that although he does not have to test my lipase or my platelets, when the high numbers crossed his desk, he must investigate. Since a conversation that he had with my GP provided no further insight in to these mysterious levels, he must assume that the Rebif is the culprit. Elevated lipase is not usually an issue with Rebif (that's why he wouldn't test it under normal circumstances) but documentation does show that it CAN become an issue.
I don't feel that I left his office with any clear cut decisions, and I don't think that he feels that any decisions were made either. I mentioned that I would like to wait until after my tests in December, as this could provide us with some answers. We also discussed the option of a "drug holiday" (two weeks with no drug, but the potential of a relapse). We talked about Copaxone, and why I won't return to it (welts!). And he talked about Avonex (once a week, self-injected intra-muscular injections)...and as a last resort, Betaseron (another beta-interferon like Rebif). He wants me to make educated decisions.
In the meantime, he has sent a referral to a gastrointerologist for me.
I think that I should host an open house for all medical specialties...come and check me out...coffee and cake will be served!
Emily
Rebif Rebif Rebif
Posted in Rebif on Friday, November 14, 2008 by Emms
My MS doctor has been closely monitoring me while I am on Rebif. If you remember, I went from weekly blood tests, to now monthly blood tests. He wants to keep a close eye on my liver enzymes, which, if I haven't mentioned yet, are currently normal. He takes his monitoring quite seriously: I only ever receive 8 weeks of Rebif per refill. He also calls me...himself...to let me know what levels are out of the normal range.
This means that every two months, my pharmacy has to request a renewal from the MS Clinic. In turn, this means that I have to keep a close eye on my supply, and any refills that I have, and make my request to my pharmacy in good time, in order for them to hear back from the Clinic.
Before I left for Ontario (which was on October 30) I called my pharmacy, and requested that they request a renewal. On Tuesday of this week, I called the pharmacy and ordered a month of Rebif.
Are you still with me?
Yesterday, my pharmacy called me to let me know that the Clinic would not renew my Rebif. I know that I have exactly 2 needles left, and this is no time for games! Apparently, Dr.E (my MS doc) wants to see me before he gives me more Rebif. A quick call to the Clinic gets me set up for a visit with Dr. E this coming Monday.
I know exactly what is coming. In our last conversation, Dr E. said that he wants me to consider stopping the Rebif. I'm not exactly sure what he is basing this on. My liver enzymes have been coming in normal for the past two months, and the hepatologist isn't concerned.
What is high, are my platelets...and my lipase...oh, and my hemoglobin is low.
This has been since my "Summer 08 Trauma...Appy-Gate".
I'm going to ask Dr E to leave me on the Rebif while my other medical issues get sorted out. (which is now going to be in December, as my colonoscopy was rescheduled). I'm also going to ask for an MRI. I haven't had one since April 07, and I'm curious. On the outside, it looks like the Rebif is working for me...but what about inside? I'm a prime example of the lack of correlation between the presence of lesions and the visible presence of disease.
I feel the need to repeat some past whining...just let me be!!! Why can't I have a month of no doctors? Why does someone always make me think about this disease?
I'm not sad about this...I'm frustrated!
Can I back up for a minute...
I am assuming the Rebif is working for me. I base this assumption on the following: I don't have any new symptoms. I think that just because I have moments of dancing around the house, that it is working. But I know better than that. If you are one of the lucky few to have a had a conversation with me lately, you would know that my brain is struggling. Also, I'm not wobble-less and I'm not a bundle of energy (adrenalin yes, energy...no).
Maybe I shouldn't be so quick to defend the Rebif. It just feels like the right thing to do because I don't want to go back on the Copaxone, as Dr E has suggested.
**Head on Emily...head on. This is no time to put your head in the sand.**
Emily
This means that every two months, my pharmacy has to request a renewal from the MS Clinic. In turn, this means that I have to keep a close eye on my supply, and any refills that I have, and make my request to my pharmacy in good time, in order for them to hear back from the Clinic.
Before I left for Ontario (which was on October 30) I called my pharmacy, and requested that they request a renewal. On Tuesday of this week, I called the pharmacy and ordered a month of Rebif.
Are you still with me?
Yesterday, my pharmacy called me to let me know that the Clinic would not renew my Rebif. I know that I have exactly 2 needles left, and this is no time for games! Apparently, Dr.E (my MS doc) wants to see me before he gives me more Rebif. A quick call to the Clinic gets me set up for a visit with Dr. E this coming Monday.
I know exactly what is coming. In our last conversation, Dr E. said that he wants me to consider stopping the Rebif. I'm not exactly sure what he is basing this on. My liver enzymes have been coming in normal for the past two months, and the hepatologist isn't concerned.
What is high, are my platelets...and my lipase...oh, and my hemoglobin is low.
This has been since my "Summer 08 Trauma...Appy-Gate".
I'm going to ask Dr E to leave me on the Rebif while my other medical issues get sorted out. (which is now going to be in December, as my colonoscopy was rescheduled). I'm also going to ask for an MRI. I haven't had one since April 07, and I'm curious. On the outside, it looks like the Rebif is working for me...but what about inside? I'm a prime example of the lack of correlation between the presence of lesions and the visible presence of disease.
I feel the need to repeat some past whining...just let me be!!! Why can't I have a month of no doctors? Why does someone always make me think about this disease?
I'm not sad about this...I'm frustrated!
Can I back up for a minute...
I am assuming the Rebif is working for me. I base this assumption on the following: I don't have any new symptoms. I think that just because I have moments of dancing around the house, that it is working. But I know better than that. If you are one of the lucky few to have a had a conversation with me lately, you would know that my brain is struggling. Also, I'm not wobble-less and I'm not a bundle of energy (adrenalin yes, energy...no).
Maybe I shouldn't be so quick to defend the Rebif. It just feels like the right thing to do because I don't want to go back on the Copaxone, as Dr E has suggested.
**Head on Emily...head on. This is no time to put your head in the sand.**
Emily
injections
Posted in on Thursday, November 13, 2008 by Emms
I'm home from my trip to Ontario. Before I left, I mentioned that my Rebif injections are becoming a bitter part of my life. A result of my bitterness, is that Jason has become bitter towards the injection as well.
My "vacation" presented itself as an opportunity for me to become more comfortable (and willing!) to do the injections myself, and for Jason to have a break. So while I was away, Ladyfingers performed two of the injections (manually) and I did the other two with the Rebiject (auto-injector). No big deal. But it was a good thing that I always carry an extra needle!
The Rebiject has 3 pieces: a needle cap remover, the needle housing, and the trigger housing. The needle cap remover is a part of the needle housing, that has to be removed prior to injecting. The steps are quite simple: press down the "thingy" in the trigger housing, push the needle into the needle housing, screw the two pieces together, and then remove the needle cap remover.
A couple of times in the past, Jason has forgotten to remove the needle cap remover. Little did I know, the needle cap remover is not a safety device - it is simply a device to remove the needle cap safely. So when I set the Rebiject against my thigh, pressed the trigger housing into the needles housing (the safety release!) and pushed the trigger...I didn't feel anything because I hadn't removed the needle cap piece. At first I thought that I was experiencing an awesome injection...sensation free...then I recognized what I had neglected to do. So I lifted the device off my leg, and pulled the needle cap remover off...
...creating a geyser! Rebif streamed out of the giant plastic needle, arching across the table, and onto the floor.
In the past, when forgetting to remove the needle cap, and after pressing the magic button, Jason has always unscrewed the Rebiject, and started over.
Silly me.
Emily
My "vacation" presented itself as an opportunity for me to become more comfortable (and willing!) to do the injections myself, and for Jason to have a break. So while I was away, Ladyfingers performed two of the injections (manually) and I did the other two with the Rebiject (auto-injector). No big deal. But it was a good thing that I always carry an extra needle!
The Rebiject has 3 pieces: a needle cap remover, the needle housing, and the trigger housing. The needle cap remover is a part of the needle housing, that has to be removed prior to injecting. The steps are quite simple: press down the "thingy" in the trigger housing, push the needle into the needle housing, screw the two pieces together, and then remove the needle cap remover.
A couple of times in the past, Jason has forgotten to remove the needle cap remover. Little did I know, the needle cap remover is not a safety device - it is simply a device to remove the needle cap safely. So when I set the Rebiject against my thigh, pressed the trigger housing into the needles housing (the safety release!) and pushed the trigger...I didn't feel anything because I hadn't removed the needle cap piece. At first I thought that I was experiencing an awesome injection...sensation free...then I recognized what I had neglected to do. So I lifted the device off my leg, and pulled the needle cap remover off...
...creating a geyser! Rebif streamed out of the giant plastic needle, arching across the table, and onto the floor.
In the past, when forgetting to remove the needle cap, and after pressing the magic button, Jason has always unscrewed the Rebiject, and started over.
Silly me.
Emily
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Little bits about my life with MS
