Just finished two days of IVIg infusions for the month. My CPK numbers were SLIGHTLY elevated at the beginning, but came back down again. So, for November, I'm going to go in and have lab work done the day before IVIg is scheduled. That means the lab results will be in Dr. L's hands at my appointment the next morning. If my CPK levels are normal, then we will cancel IVIG for the time being. I'll continue to get lab drawn every few weeks to make sure that it doesn't climb back up. If it does, then I'll have to get right back in for another infusion.
Not sure how I really feel about it. I mean, I'm glad that my labs have looked good, but we know that the IVIg works for me. Each time we've tried to stop it, I've gone into a flare. Why can't we just keep going? Why fix something that isn't broken, you know? It's all b/c of insurance. To prove to the insurance company that I need it, I have to stop taking it and flare up. Nice. They aren't the ones that will take a few months recovering from the flare.
Showing posts with label IVIg. Show all posts
Showing posts with label IVIg. Show all posts
Friday, October 7, 2011
Saturday, October 16, 2010
2 months, normal CPK
2 months in a row of normal CPK levels. Yeah. The CPK this month was higher than last month...but right at the level to be considered normal. So, this is a good thing. I can try to increase PT exercises without causing more muscle damage.
Of course, CPK levels are only part of Polymyositis...but, it's taken three years to get it in the normal range. so, yeah!
I've been really fatigued. Dr. Lowery thinks that is probably due to decreasing the prednisone...just my body adjusting to the change. She said we could go slower on the taper. No way! I want off of that stuff so very much!
Got the official word from my insurance company. I won the appeal, partly. They are going to go back and pay Dr. Lowery through November of this year. But, after that, I have to find a different doctor. So, Dr. Lowery looked at the list they provided me. There were 6 names. One of them doesn't practice anymore. one of them is a pediatric rheumy. The others are at the facility where I work...there is a 4-6 month wait to get an appointment. She's going to try to get me in under an emergency basis. I can't go without treatment a month, much less 4-6 months. I really, really do not want to change doctors. Anyone want to donate the $5000 for out of pocket expenses so that I can stay with Dr. Lowery?
My strength does seem to be getting some better. That's a good thing. No where near where it was, and I think that there is some damage that won't be able to be reversed, but there's improvement none the less.
Of course, CPK levels are only part of Polymyositis...but, it's taken three years to get it in the normal range. so, yeah!
I've been really fatigued. Dr. Lowery thinks that is probably due to decreasing the prednisone...just my body adjusting to the change. She said we could go slower on the taper. No way! I want off of that stuff so very much!
Got the official word from my insurance company. I won the appeal, partly. They are going to go back and pay Dr. Lowery through November of this year. But, after that, I have to find a different doctor. So, Dr. Lowery looked at the list they provided me. There were 6 names. One of them doesn't practice anymore. one of them is a pediatric rheumy. The others are at the facility where I work...there is a 4-6 month wait to get an appointment. She's going to try to get me in under an emergency basis. I can't go without treatment a month, much less 4-6 months. I really, really do not want to change doctors. Anyone want to donate the $5000 for out of pocket expenses so that I can stay with Dr. Lowery?
My strength does seem to be getting some better. That's a good thing. No where near where it was, and I think that there is some damage that won't be able to be reversed, but there's improvement none the less.
Saturday, August 21, 2010
August update
Last week was my IVIg infusions for the month of August. Haven't heard just yet what my CPK levels are, but I'm feeling pretty good...so, I'm thinking they are still on the decline :) I'm feeling a bit stronger, I think. I'm walking more around the house and at work...as long as it isn't too far. My breathing seems to be better. I don't feel like I'm struggling to get a breath or have something heavy sitting on my chest.
Pain meds are wonderful :) Pain is more controlled. Probably another reason I'm able to try walking around more. I've not needed one of them as often as we thought I might...so, that's a good thing too.
All in all, it's been an okay month as for the polymyositis...if only we could get rid of the medical bills! My insurance company has decided to go back and reverse payments on the last 1 1/2 years of claims to one of my doctors. It has left me with over $11,000 that I supposedly owe to this doctor. I'm appealing it. The doctor's office is appealing it. and, the HR department where I work is looking into it for me as well, but I'm not sure what the outcome is going to me. It makes me really anxious. I hate to owe money to anyone. I guess, though, I could look on a brighter side...with as much as IVIg costs...and with all the other medical expenses...$11,000 isn't all that much.
*sigh* I still don't have that much to pay.
Pain meds are wonderful :) Pain is more controlled. Probably another reason I'm able to try walking around more. I've not needed one of them as often as we thought I might...so, that's a good thing too.
All in all, it's been an okay month as for the polymyositis...if only we could get rid of the medical bills! My insurance company has decided to go back and reverse payments on the last 1 1/2 years of claims to one of my doctors. It has left me with over $11,000 that I supposedly owe to this doctor. I'm appealing it. The doctor's office is appealing it. and, the HR department where I work is looking into it for me as well, but I'm not sure what the outcome is going to me. It makes me really anxious. I hate to owe money to anyone. I guess, though, I could look on a brighter side...with as much as IVIg costs...and with all the other medical expenses...$11,000 isn't all that much.
*sigh* I still don't have that much to pay.
Tuesday, July 20, 2010
IVIG today
Yesterday and Today I had this month's IVIg treatment. Yesterday, over halfway through the treatment, I developed a bad headache and vomited. It is one of the side effects of IVIg...so, Dr. Lowery had them give me something for the headache through my port. It helped :)
I've not really had side effects of the IVIg treatments, aside from being tired and cranky afterward...easily treated by chilling on the couch in the evening! But, these last few treatments have kinda thrown me for a loop.
Today during the treatment, early on, I started with the headache and being nauseous. Dr. L had them give me pain med for the headache and something for the nauseousness. It helped some, but never got rid of it completely...but it was tolerable. Tonight, I have a tremendous headache, nauseous, stomach cramps, etc...I'm quite miserable and not much of anything I can do about it. I have no pain meds other than tylenol, which has not helped. My other, normal, everyday pain is...well, painful and I've spent the evening in tears in the bathroom so that Mik wouldn't know...I'm just ready for this to stop.
I've not really had side effects of the IVIg treatments, aside from being tired and cranky afterward...easily treated by chilling on the couch in the evening! But, these last few treatments have kinda thrown me for a loop.
Today during the treatment, early on, I started with the headache and being nauseous. Dr. L had them give me pain med for the headache and something for the nauseousness. It helped some, but never got rid of it completely...but it was tolerable. Tonight, I have a tremendous headache, nauseous, stomach cramps, etc...I'm quite miserable and not much of anything I can do about it. I have no pain meds other than tylenol, which has not helped. My other, normal, everyday pain is...well, painful and I've spent the evening in tears in the bathroom so that Mik wouldn't know...I'm just ready for this to stop.
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