Neupogen?

prudence9-2 · August 2017

My RE said we could try neupogen injections for my next FET cycle. She said there is not much research for the long term effects of this drug. And it might cause leukemia. She said we would only use it for 6.5 weeks. So she's hoping that it is not long enough to cause damage

Few questions:
- if you used this, why was it recommended for you?
- what type of tests did you have before you took it?
- did you have any side effects? (Like hair loss?)

**** TW *****
after 2 miscarriages with PGS normal embryos, I was told that maybe that will help...
****end TW****

prudence9-2 · August 2017

Bump!

anyone been using this? Maybe someone with immune issues??

Ash_SE · August 2017

I did Neupogen under the guidance of my RE and an Hematologist Oncologist. It didn't work but a second opinion RE thinks I might have Adenomyosis in my uterus so that is why it didn't work.

I did Bloodwork that said I need the Neupogen. They looked at me and DH and genetically we have a problem where 50% of our embryos would get rejected by my body ( immune stuff) that has a fair bit of research.

Ive never been told it can cause leukemia. My Oncologist that monitored It is very good and would have mentioned it. I'd get that checked. I did injection every day based on weight. I also had white blood cell count monitored weekly because the risk is to your spleen if it gets too high.

I also did Pred as well. The Neupogen did work to get my inflammation down as well. I'm going to do it again when we do another FET after looking and treating the possible uterus issues. Have you had any immune bloodwork? I can send you the info on that . My insurance covered it. I wouldn't do Pred or Neupogen without bloodwork first.

Dr Wang at SIRM in NYC is my second opinion. He is kinda the last resort for failed with PGS. He told me even if you get chemicals it's still likely a uterus issue. Have you looked at the Yale EFT test? He does Skype consults and he is very through and will look at all your records and spend an hour and half with you in the consult.

prudence9-2 · August 2017

@Ash_SE that's great that they might have found the cause. What will you have to do differently on the next FET cycle?

Im not sure if the EFT test is for me. Because from what I understand, it is for when embryos don't implant? In my case, 2 PGS normal embryos implanted. And then miscarried.

Im going to ask my doctor about the blood work. She said we would only do it for 6.5 weeks. Until I'm 9 weeks.

As for leukemia, there is not enough long term research to say if neupogen does or doesn't cause leukemia. But from what my dr said, since you try to get the white blood cell count up, they are worried it might cause leukemia.

Ash_SE · August 2017

No Dr Wang said chemicals don't really count as successful implantation. I've had multiple chemicals. If you have a poor uterine environment it can be widespread so no implantation or localized so that you get a chemical and as it grows it runs into the bad cells. Or it implants in a less than optimal spot so it can't survive. Also explains ectopic as well that are close to the uterus ( like mine). An EFT is done witha natural cycle so you monitor for ovulation and do the test 9-11 days past. It's an endometrial biopsy and mailed off to Yale. It looks for a bunch of stuff like infection and also certain proteins you need. I'm also getting an MRI to look for Adenomyosis ( 90% diagnosis rate) since I do have a slightly enlarged uterus ( warning sign) and poor implantation. If you have had polyps it is also a sign of a poor uterine environment. The Yale EFT is like $600 plus the biopsy cost ( my insurance covers that part) . I'd highly recommend doing it for failed PGS FET.

The treatment for it is 3 months Depot Lupron shots ( 1 per month) to shut down your system and then FET. The theory is that it returns more normal. He has had good success with it.

Ash_SE · August 2017

Also Adenomyosis impacts the ability of the uterus to stretch to accommodate growth so will cause early miscarriage even if you get implantation.

These are the neupogen tests. I have the KIR AA genitype and no HLA C2. My husband has 1 C2 and 1 C1. So embryos have a 50% chance of having a C2 which is bad because I have none. The Neupogen helps overcome that. https://s3.amazonaws.com/rfums-bigtree/files/resources/12-07-15-hla-c-group-typing.pdf

prudence9-2 · August 2017

@Ash_SE thanks again for all the information!! When you had chemicals, what was your HCG?

For me, 14dp5dt it was 145.

I will I'll ask my dr about this test. We did do a biopsy of the uterine lining and found nothing. And to be even more careful in case there was some sort of infection, I was put on 2 weeks of antibiotics.

I am using a sperm donor. So when it comes to compatibility between me and the donor, like the test you and your husband had, this is not something that can be tested for me. I don't know who the donor is or where he is right now.

So say your husband's results were different, maybe the immune issues you're having wouldn't be an issue?

Ash_SE · August 2017

Yes I'd still have the imflamation issues and NK cells but that is likely tied to the possible Adenomyosis or another autoimmune issues I have. But yes if I had C2 or didn't have the KIR AA that wouldn't be an issue.

You can get tested for the KIR genotype on your own and if you have AA Neupogen is old for you. Also if you have high inflammation it helps with that but usually you will try Pred or Intralipids first since those are way cheaper.

If I were you I would do the EFT. It looks for proteins that should be in place after ovulation for implantation. If you don't have them implantation won't even good. The reset helps with that.

My chemcials have have gotten worse and worse. First time betas topped out at just under 1000. Then ectopic which had normal great betas-500 then 1400 . They were 6000 at the rupture surgery . It implanted right near the uterus in the bottom of the tube so it just didn't like my uterus and wanted to go someplace else. Third chemcial they stopped around 150. I had a preg that I didn't do betas ( my first) that I had morning sickness until around 6w and then it stopped and I bled. Nothing seem on ultrasound.

prudence9-2 · August 2017

@Ash_SE so the fact that I'm using a sperm donor prevents me from knowing for sure about some possible immune issues?

i will definitely ask my dr about the EFT test. I'm writing her an email right now.

Wow, sorry to hear about all your chemicals. That is so tough.

When are you expecting to do another FET?

what would you do to treat the adenomyosis?

prudence9-2 · August 2017

Ash_SE said:

. But yes if I had C2 or didn't have the KIR AA that wouldn't be an issue.

And what will you do to deal with this issue?

i wonder if my donor is just not a good match with me. And if I tried again with a different donor maybe the outcome would have been different?

prudence9-2 · August 2017

Sent a bunch of questions to my doctor and my nurse wrote me back and pretty much dismissed my concern using this medication without knowing for sure that this is what I need. So frustrating.

She did say that she's going to ask the dr about EFT...

prudence9-2 · October 2017

Going to start neupogen on Wed. Does anyone here recently used it and have some tips to what I should be expecting?

jenrn1216 · October 2017

I wasn't sure why this was being used for IF, but just did a little research and figured it out. I give neupogen to chemo patients to bring up white blood cell counts so they can fight infection.

@prudence9-2 side effects are mainly bone achiness and flu like symptoms. It stimulates your bone marrow to produce white blood cells. Taking claritin once a day will help with these side effects.

prudence9-2 · October 2017

@jenrn1216 thanks. I know why they give it to me. I was wondering if anyone used it and can tell me more than what I read online about it.

Also for IF the quantities are lower than for chemo.

The side effects online are for ppl using the larger quantities for chemo.

So would be nice to hear from someone that used it for FET.

jenrn1216 · October 2017

Understand, just telling you the side effects that I see patients experience on the med. It's still stimulating wbc production, so you may experience this.

prudence9-2 · October 2017

Yeah. I read all that

was as hoping for first hand experience from ppl using it for IVF

prudence9-2 · October 2017

I’m hoping that symptoms will not be as strong as for patients going thru chemo.

jenrn1216 · October 2017

I don't know what your dose is, but we usually give 300mcg

prudence9-2 · October 2017

My dose will be 60mcg a day. So as you can see much lower than with chemo.

jenrn1216 · October 2017

Yes, definitely! I don't think you'll experience much with that!

prudence9-2 · October 2017

@jenrn1216 yay! Exactly what I wanted to hear

jenrn1216 · October 2017

Good luck @prudence9-2

prudence9-2 · October 2017

@jenrn1216 thanks!

prudence9-2 · October 2017

@jenrn1216 so you work with cancer patients that take neupogen?

jenrn1216 · October 2017

@prudence9-2 yes, I'm an oncology nurse

prudence9-2 · October 2017

@jenrn1216 such a tough job! With those patients taking such high dosage of neupogen, do they have weekly blood count blood tests?

Im suppose to have them weekly. To make sure my WBC is not too high. As that might cause spleen rapture

jenrn1216 · October 2017

Yes, definitely weekly. Risk of spleen rupture is higher in younger patients, but I haven't seen it happen. I think you'll be fine!

prudence9-2 · October 2017

@jenrn1216 I hope so

Ash_SE · October 2017

@prudence9-2 did the Neupogen work? How are you?

prudence9-2 · October 2017

@Ash_SE unfortunately the neupogen didn’t get a chance to work because the embryo didn’t even implant

I got a BFN... waiting for my period now.

During my WTF appt we decided to try neupogen again next time around. But before I attempt FET of my last embryo, we will do ERA.

How are uou? What are your next steps?

sunnyday120 · April 2019

How did the Neupogen go? What dose are you on? Any side effects?
My doc wants me on Neupogen too. I really have not had much testing done, what I was was mostly normal. Just anticardiolipin antibodies were raised.
I had three failed normal embryo transfers. Chemical pregnancy.
Any advice would be helpful. Thank you.

LoveDontCostAThing · April 2019

@sunnyday120
Hi, I am lurking because I became friends with @prudence9-2, and we still talk! I remember her reservations about neupogen, BUT *TW* she may not be answering because she's busy with her 4 month old

So, I think the neupogen may have helped her. I will reach out and ask her to connect with you!!

prudence9-2 · April 2019

Hi @LoveDontCostAThing

@sunnyday120 I was on neupogen since transfer day to beta day. And since my beta was negative I stopped. I only did neupogen that one cycle.

If you had 3 CP, you might want to ask your RE about the ERA test. I’ve done ERA the cycle after I’ve done neupogen and we found out that I needed another 12 hours of PIO. Unfortunately adding the 12 hours didn’t work and I had to do another IVF and I ended up with a fresh 3-day transfer.

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