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Today I quit the tacrolimus. My counts are no better and I'm still needing transfusions. The LDN takes the edge off the most horrible symptoms and I've been taking 4.5 mg a day since Nov.
In early Jan I had a blip in my counts, but I don't know why.
- I had reduced my dose of olmesartan to 20 mg 4x a day down from 40 mg 4x a day. I take it for insomnia and chronic pain and I felt so bad after 5 days I had to increase it again.
- I had blood tests Jan 5:
HGB 83, WBC 1.5, Neut 1.0, Plat 100, Lymph 0.4, Creat 124
- BMB and more blood tests Jan 7:
HGB 88, WBC 2.5
The dr said it was probably just the machine at the hospital and you can't get excited about a 5 pt increase. When I thought about it though, it was not only a 5 point increase, it should have also been a 4 point decrease, so my HGB in 2 days was 9 points higher than expected. This was the first blip in my HGB in 16 months.
I just did an experiment of cutting down more slowly on olmesartan to see if the tacro would kick in. My count was no better, and I felt like I had been hit by a bus. This morning I decided to ditch the tacro and go back on my regular dose of olmesartan. I mean, if I have pain and can't sleep, how can I drag myself through work each day?
Just posting this now, I am wondering if maybe it's the LDN? My lymph counts are always around 0.5 but my WBC seems to be varying quite a bit. Platelets too, all over the map.
I also wonder if you can be dehydrated enough to gain 9 points in HGB in 2 days? I was taking tylenol sinus at the time.
The new dr has given me a prescription for Neoral cyclosporine. I took sandoz before and had all kinds of horrible side effects. Does anyone have experience with both types of cyclo? I'm really not looking forward to taking any kind of cyclo again.
Taking it though is a test to see if it works, and if not, then we might talk about autologous SCT. I have a feeling if it does work, then they will just want me to take it forever and they'll never figure out the root cause of this.
Deb
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