Infusion Update
Posted: Fri Feb 03, 2017 4:34 am
With going back and forth to CA to work with Dr B as well as getting ready to move and again teaching classes at a university, my life has been a bit more hectic than I prefer. Hoping to be packed and moved by May. I originally said I hoped March, husband said July - am hoping we split the difference and go in May. The condo is almost ready to sell - having floors redone next.
I went out in September and established residency and was able to get insurance through the ACA (don't even get me started on that with the new changes coming). It took about 6 weeks to get to see the hematologist and he agreed to follow Dr Bs protocol. I had that in mid-November. They did it in two infusions instead of two. And, it wasn't until they charged another $800 that I realized that they had given me more iron than they were supposed to. I don't think the doctor shared the protocol with the nurse who adminsisters the infusions - she is only at this site one day a week. A long story as to why, but I thought they were splitting it into two treatments, two weeks apart, each of 500 mg. But, they gave me 750 each time, instead. I didn't put that together until the last drops of the second 750 were draining...
I ignored it - I just didn't want to think about what that could mean and chose to instead believe that all would be fine.
Three weeks later, I was driving my friend to Colorado - she was moving from Chicago and has lupus and gets fatigued easily, so driving alone was a bit scary. I was hoping to see some improvement as I'd been able to reduce meds at the 3 week mark after the other infusions, but I did not. After 4 or 5 weeks, I just figured it didn't help even though it's always helped before right around the 3 week mark.
My plan was to have it work, stop the opioid and stay on pramipexole for 2 months to get the opioid out of my system, then stop the pramipexole, too, and see what happened with no drugs. Before the infusion I had hit a rough patch and 30-35 mg methadone wasn't always enough when I used it alone (I wanted to take a break from pramipexole so I'd limit my chances of augmenting. I normally need about .325 mg pramipexole when I use it alone and after I stopped the methadone, I needed .50! I was relatively resigned about that time that this was $1600 wasted.
I decided to go back to methadone three weeks ago to take a break from the pramipexole and figured I'd go back to alternating them. I had given up on the idea of taking a complete break. I switched over a week, reducing one while increasing the other. But, the oddest think happened. Instead of the 30-35 mg of methadone I needed pre-infusion, I only needed 17.5! That stayed consistent over the next week. Twice I did need an additional 2.5 mg to get back to sleep, but most nights, I woke up with mild symptoms, read for a little while, and then went back to sleep.
Last night I decided to try the two together. I used about .03 mg pramipexole and 7.5 mg methadone and never awakened. I think I could have used less. Not sure about the pramipexole - I had a portion of one-quarter of a .25 mg tablet - so likely around .03 mg. I set out 15 mg of methadone since I'd been taking 17.5 and figured after I took the first 5 mg that I'd just keep adding it until symptoms were covered. I took 5 mg and a few hours later, was tired and didn't seem to have any symptoms - just in case as I got into bed I took 2.5 more, but not sure I needed to.
I realize that an infusion is all about getting the iron to the right place and we never know if it will get there. But to work about 9 weeks after the infusion? I thought that I'd read that the range was 2-8 weeks. And, maybe it was 8 weeks when I first started to switch over - I'd stopped looking for any effect by Jan 1st - which was about 6 weeks.
It has only been one night at this ridiculously low rate. I set out .0625 pramipexole and 5 mg methadone and I'll see what happens.
If this keeps up, I am wondering if I should stop all drugs? Also wishing I were in CA so I could be a blood test to find out where the ferritin is...not sure I can get one here in Illinois and have it covered.
I went out in September and established residency and was able to get insurance through the ACA (don't even get me started on that with the new changes coming). It took about 6 weeks to get to see the hematologist and he agreed to follow Dr Bs protocol. I had that in mid-November. They did it in two infusions instead of two. And, it wasn't until they charged another $800 that I realized that they had given me more iron than they were supposed to. I don't think the doctor shared the protocol with the nurse who adminsisters the infusions - she is only at this site one day a week. A long story as to why, but I thought they were splitting it into two treatments, two weeks apart, each of 500 mg. But, they gave me 750 each time, instead. I didn't put that together until the last drops of the second 750 were draining...
I ignored it - I just didn't want to think about what that could mean and chose to instead believe that all would be fine.
Three weeks later, I was driving my friend to Colorado - she was moving from Chicago and has lupus and gets fatigued easily, so driving alone was a bit scary. I was hoping to see some improvement as I'd been able to reduce meds at the 3 week mark after the other infusions, but I did not. After 4 or 5 weeks, I just figured it didn't help even though it's always helped before right around the 3 week mark.
My plan was to have it work, stop the opioid and stay on pramipexole for 2 months to get the opioid out of my system, then stop the pramipexole, too, and see what happened with no drugs. Before the infusion I had hit a rough patch and 30-35 mg methadone wasn't always enough when I used it alone (I wanted to take a break from pramipexole so I'd limit my chances of augmenting. I normally need about .325 mg pramipexole when I use it alone and after I stopped the methadone, I needed .50! I was relatively resigned about that time that this was $1600 wasted.
I decided to go back to methadone three weeks ago to take a break from the pramipexole and figured I'd go back to alternating them. I had given up on the idea of taking a complete break. I switched over a week, reducing one while increasing the other. But, the oddest think happened. Instead of the 30-35 mg of methadone I needed pre-infusion, I only needed 17.5! That stayed consistent over the next week. Twice I did need an additional 2.5 mg to get back to sleep, but most nights, I woke up with mild symptoms, read for a little while, and then went back to sleep.
Last night I decided to try the two together. I used about .03 mg pramipexole and 7.5 mg methadone and never awakened. I think I could have used less. Not sure about the pramipexole - I had a portion of one-quarter of a .25 mg tablet - so likely around .03 mg. I set out 15 mg of methadone since I'd been taking 17.5 and figured after I took the first 5 mg that I'd just keep adding it until symptoms were covered. I took 5 mg and a few hours later, was tired and didn't seem to have any symptoms - just in case as I got into bed I took 2.5 more, but not sure I needed to.
I realize that an infusion is all about getting the iron to the right place and we never know if it will get there. But to work about 9 weeks after the infusion? I thought that I'd read that the range was 2-8 weeks. And, maybe it was 8 weeks when I first started to switch over - I'd stopped looking for any effect by Jan 1st - which was about 6 weeks.
It has only been one night at this ridiculously low rate. I set out .0625 pramipexole and 5 mg methadone and I'll see what happens.
If this keeps up, I am wondering if I should stop all drugs? Also wishing I were in CA so I could be a blood test to find out where the ferritin is...not sure I can get one here in Illinois and have it covered.