The reproductive immunologist called yesterday with the reports. As usual, good news and bad news.
good news:
both cytokine tests were within normal range
me 23.8 high normal 30.6
me 8.9 high normal 20.5
Natural Killer cells were also within normal range 7.2
bad news:
I have extremely elevated cytotoxic B- cells (CD19 & CD5).
me 40 normal range 5-10
After doing additional testing involving my blood and other cells, then adding IVIG therapy, it was shown that IVIG worked and brought down the "degree of harm" to 10.7. I'm sure this will all make more sense when I see the lab reports myself. I was just writing down numbers and information as quickly as he was talking.
The reproductive immunologist and I spoke for a long time about what to do from here, the differences between IVIG and intralipid iv therapy, and of course, the cost. The other issue is that IVIG is a blood product, so although it is screened, there is also the very low risk of HIV, hepatitis, and several other blood borne viruses. The reproductive immunologist said that there have not been any reported cases of contaminated blood with IVIG, but I’m still kind of meh about the process. The other tiny issue is that I’m O-negative, and can therefore only receive O-neg blood. It’s always something….
He seemed to be really pushing for IVIG, but then mentioned several times that intralipids might do the trick. I’m definitely leaning toward intralipids for a number of reasons, mainly because it’s not a blood product and because it’s much less expensive than IVIG. Each IVIG infusion is $3500, plus after each infusion, they send additional lab work back to Chicago. Intralipids are about 15% the cost of IVIG, so that would save a lot of money. He was going to talk to my RE and consult with a few others, I will be doing the same.
The next step is getting the meds ordered. I’ll start heparin injections, steroids, and a few other meds several weeks before beginning actual IVF meds, so those need to be ordered soon.
I think I'll also start looking for an IVF or auto-immune infertility board to join online. Any suggestions?
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Hi C, well I'm really happy for the good news and sorry about the elevated value. But if he kept telling you that the IL may do the trick then why not give that a go? Do you have dates then for your IVF cycle? much love, Fran
ReplyDeleteHi Fran,
ReplyDeleteYes, I definitely want to do intralipids versus IVIG, just waiting for the reproductive immunologist to do all of the consultations with the other doctors at this point. I hope to hear something early next week so we can order the meds. I'm already on the dreaded birth control pill. Ack
Love, C
OK -now I get it. I realise this is an older post, but do you know about the RI board on Yahoo? If you just go to Yahoo and search the groups you will find it. Also there is a bit of an RI section on Fertile Thoughts bulletin boards.
ReplyDeleteI think intralipids is now preferred to IVIG. I hear good things about RFU. Good luck!!!