Advice on poor response to Hi dose of Follistim.......HELP!

[ally01]

I started one session with 225 Follistim in order to do an artificial insemination. I had 5 follicles but as time progressed, one dominated and the others weren't maturing. My hubbie and I decided to abandon the process and just try the natural way. Nothing happened.

Now, I'm 10 days into a 450/day of Follistim and I only produced 4 follicles. The doctor says this is a real disappointment and that b/c I'm on "a lot of medication" there's only one more protocal to try at 600/day. We may or may not try artificial with this cycle but if that doesn't work, we're on the fence as to what to do next.

Doctor says that my low numbers are an indicator of poor egg quality compared to a woman who would have produced more like 10+ follicles. Although next time they can increase my dosage, history suggests that I'm not going to produce a lot of eggs and research suggests that my chances of success are lower than the already low 40%.

Should we just charge ahead with egg donor or use more of this monopoly money and try for "our" babY?

[daly]

I think we are in very similar situations. I also read those stats for poor responders. I know that a younger age <35 can be a bonus compared to older poor responders. And I know so many people who got pregnant even though high FSH and older- therefore poor egg reserve, quality etc.

I was on the exact same follistim dose. (and I'm only 33) And I've got high FSH (12.2). My doctor did everything in my cycle to maximize growth. This included using Antagon (newer medication with less suppressive effects) instead of Lupron and added Repronex 2 vials (I think 150 units total) to my stim cycle. He stated RE's now believe a little LH that Repronex has enhances egg growth. I had 8 follicles and all had good quality eggs in them. I also see an acupunturist. For my next cycle we are going to use 600 of Follistim and I'm hoping to get at least 8 eggs again. We won't change anything else in the protocol. I feel it is definately worth a 2nd try IF you are OK with cost of meds and dont' feel you've done everything possible for you own bio eggs. If you're a peace with your efforts for your own bio eggs a donor egg is always a great option. ( I keep telling myselft that as I want 3 kids!)

Remember that each cycle can be very different. There isn't always a good explanation. Please feel free to PM for any questions about my cycle. I wish you wonderful joy in whatever path you choose!

[ally01]

Daly

Thank you for your note and words of encouragement!

Although we aren't moving forward with IVF this cycle, my doctor is recommending artifiicial insemination. That should happen Monday or Tuesday. I have two maturing follicles and I guess his thought is that we should try to do something with them.

Again, next session (assuming we don't jump into egg donor) will be 600 follistim/day. I'll ask him about the other medication that you mentioned.

If money weren't an option, I would keep trying and trying with my own eggs. I guess the doubt, coupled with the gamble of the stats and percentages, creates a lot of doubt and uncertainty. I'm sure everyone must feel that way so I'm trying to gain some peace there.

I'm sure it will work out to how it is meant to be. Is that how you get through all of this too?

Prior to this forum, I didn't know who to talk to! My brother and his wife (age 44 and 42) are preg with baby girl and boy after over two years of trying. They are very private with what they did and other than that, I wasn't sure who I could talk to. It's not an easy subject to broach, as it's private and not everyone knows the details about it. Even after over one year of trying, a lot of this fertility lingo is foreign. I'm learning though....

Anyways, Monday and TUesday should be our days for the procedure and even though it's only 10-15% likely for it to work, I guess I'll take that.

Thanks again for your note....I appreciate it more than you know! I'm going to go back and re-read it so I can understand more about what you're going through.

Allyson

[ally01]

Daly

I also wanted to ask you about your visits to the accupuncturist plus also where do you live? I didn't realize that access to egg donors was a difficult thing??????

[KC_TTC]

Ally -

What is your FSH?

I was on the 225 dose with Lupron my first IVF cycle and got cancelled due to low follicle count. Ultrasound showed about 3-4 follicles with one that we called "greedy guy" because it was so big. We did IUI that cycle and it failed (I wasn't surprised).

The next cycle we increased follistim to 225 in the morning and 225 in the evening (I injected into my belly this time), and did the combo Antagon/Repronex injection, too.

They didn't cancel us, but they thought we only had about 6-7 follicles. They weren't sure if that was the best I could do, so we went forward with the the egg retrieval (IVF).

When I woke up, they had retrieved 11 eggs!!!! The ultrasound they do in the office does NOT always reveal all of the eggs that are present.

We were able to fertilize 8 of the 11, and 6 of them made it to Day 3. We transferred 3 at that time and then let the other 3 get to blastocysts and froze them.

We are pregnant with twins now (at first all 3 embies implanted, but we lost one around 10 weeks). I'm glad I didn't listen to the doc when he suggested that we weren't good candidates for using our own material (sperm and egg). My body didn't produce as well as other people have, but it did just enough to get us here.

Good luck and don't lose hope yet.

[ally01]

Wow! That's fantastic! Yep I go back and forth about it only takes one good egg!

We cancelled IVF and were doing IUI this cycle, due to low follicle count of 4. Today we went in and 3 of the 4 were growing (1.9, 17, 1.5) and they were very pleased with that. That had hoped I could do injections for one more day to prod the 1.5 and 1.3 to grow, but then we got bad news. My estrogen level dropped from 530 (yesterday) to 494. I guess that's not ideal and then the doctor said we could do natural of IUI, which was a discouraging prognosis. The nurse called again and said that 3 follicles looked good and that was positive but they're not sure of the quality with the drop. We're opting to move forward and tomorrow they take DH sample plus they will test the LH level on my sample. It's doubtful that I can do 2 IUIs with the timing.

Anyways, I think we've decided to hope this works and if not, do one more IVF before making any other decisions. My doctor (after only 4 follicles were on day 7 or lowered my Follistim meds to 125 2/day versus 225 but I still continued with .5cc of Lupron. Maybe at 300 2/day, I'll have better response. It seems that some women don't take Lupron but take something different (starts with an 'r'). You wrote about it too. SHould I ask my doctor?

Again, congrats with the twins that's terrific!

Me: 37
DH: 40
FSH on day 3: 9.4
FSH at later late: 10.7

[KC_TTC]

my doc said that the long course of lupron might have been contributing to the slow follicle development. i definitely did better with the repronex/antagon and 225 follistim 2x a day. don't give up until they try that other suppression protocol!

My two cycles were some of the most stressful periods of my life, so take it easy on yourself.

[daly]

Hi Ally,

Sorry I was away over the week-end and not able to write back until today!! I bet you'll have a better cycle without Lupron. It tends to suppress poor responders way too much. My doc didn't even consider it in my case. (he knew I was a poor responder) Also, adding some LH may enhance your cycle. Follistim dose not contain LH and my RE said newer data suggests a little LH helps growth and quality. Repronex contains about equal amounts of LH and FSH. He just added a little Repronex to my cycle relative to the amoutn of Follistim.

Also, I had the same experience as KC where they underesteimated the amount of eggs I had produced in the office ultrasound. You may have a egg or two hiding back there somewhere in addition to the ones they see. I hope your IUI goes really well. I had 2 IUIs until my ectopic and got pregnant on second try with follicle counts of 4-5. So, it could definately happen for you this cycle. The estradial dropping is not a "good" sign, but does not rule out that none of the eggs could be good quality. Remember - it only takes 1!!

I live in Los Angeles California. We definately have plentiful egg donors in this large city. I may consider egg donation after 3 or 4 IVF tries depending on how well I'm responding. I'm trying to take in one cycle at a time and keep the big picture in perspective. As long as I have a uterus, I'm determined to have a baby somehow!!

I see an infertility acupunturist fairly regularly, but she has some definate times I have to be seen before and after retrieval. I think it helps even if it is just placebo, that can still be powerful medicine! There are 2 good studies - one German and one Japanese about improved success with IVF and acupuncture. The herbs they prescribe are a bit more complicated. I'm not sure how I feel about that, but my friend is happily 5 mnth pregnant after 3 mc and she credits the herbs and the needles. Since I'm not trying for the next 2 mn I'll take herbs for now.

I'm so glad you are a part of this site. I've read multiple studies stating women in support groups have better success with IVF. Please feel free to ask my anything.

KC - I was thrilled to read your note!! It gives us poor reponders such hope to see success. Congratulations on your twins. That is my dream for my next IVF. I was wondering what your FSH is? So far my RE is fairly confident we should get pregnant with my eggs, we just need to act fast because FSH can jump!

[KC_TTC]

Cycle 1 FSH = 7 (cancelled) estradiol peaked at 255 with 3-4 follicles
Cycle 2 FSH = 9 (successful) estradiol peaked at 1574 with 6-7 on U/S

I only had a month between cycles, so I was surprised to see the FSH jump, but I understand that it can vary from month to month.

It may have been crazy, but I like to think that shooting the follistim in my belly got the drug where it needed to be versus a shot in the behind. I have a lot of padding back there and didn't anything to slow down the juice getting to my follies

[ally01]

Hello there,

Glad to have the support from you ladies....thanks very much for that!

Well, after the plateau of estradial (530 on Sat and 494 on Sun) I moved forward with 2 IUIs and they believe 2-4 of the follicles may have matured. They of course, said that the plateau isn't a positive but that people do get preggie under this circumstance. At first, they weren't sure we should try for two shots but after my LH numbers looked relatively low (meaning I did not ovulate prior to HcG injection), they did both rounds. THe procedure was a little uncomfortable but was fine. DH sperm got a 4 out of 4 score so that's good news.


I asked the nurse about Responex (right name...I forget) and about the possibility of not using Lupron for the next attempt. SHe kind of chuckled and said that sometimes these chat rooms, over empower people with wrong information and that what is right for some is wrong for others. WHile I agree with this, I'd still like to maximize the protocal if we have to go there. Thoughts on how to express concerns and desires without offending the experts???????


About this attempt, I feel negative, while my DH is more positive. I guess I just keeping trying to determine the next step so that I can couch disappointment. DOes that make sense? I guess there's hope that this cycle will produce a baby (they guessed 10-15%) so I need to stay with that until I know differently, right?

I called an acupuncturist today and am going to see about an initial consultation. Is it OK to go during the 2 week wait period. If not, is there enough time for effectiveness if I go after my cycle (let's hope not) but before the next IVF cycle which would start immediately after cylce? It seems like others have written in about a couple of months of acupunture before re-starting the fertility stuff. I guess I'll find out at the appointment...waiting for a couple of months doesn't seem very soothing though!

Daly, I hope this isn't nosey but do you have insurance to pay for the IVF and IUI stuff? It's so very expensive. My DH and I are really racking up the bills and while it's all worth it, it does stress me out a bit. Sometimes I chuckle and say I'll just forgo the Lexus SUV that I want (no problem at all) and that will be $35k of savings but other times I wonder: HOW are we going to pay for all of this? THank God for home equity lines, right?

Anyways, I love chatting with you all.

[KC_TTC]

Oh, bless your heart. I mentioned to my RE that I spent time on message boards and they warned me against believing everything as well.

What I can tell you is this: there are NOT unlimited drugs available for use with IVF. It is NOT unrealistic to mix and match and find a good combination - there aren't that many to choose from.

My doctor was willing to try different dosages and brands until we found the right mix and I was fine with that since I knew we didn't have more than a handful of drugs to play with.

There is a lot of research out there that indicates that Lupron may be too suppressive for poor responders and that the Antagon/Repronex protocol reduces this issue. Do yourself and a favor and get educated and don't let your nurse freak you out

[daly]

I couldn't agree more with what KC said!! It is very normal (and shuold be required!!) to consider alternative treatments when a stim cycle isn't optimal. Lupron flare works for some poor resopnders and Antagon works better for others. Your nurse is a bit rude to laugh at you. Sounds a bit patronizing to me. I'm actually a MD and don't get that treatment as much because they know I'm a doctor and read medical literature. I do try to keep as the patient in this process because it becomes too overdeveloping. (And this is not my medical specialty!!) But I would never just laugh at a patients question!!

Anyway, ask your clinic about their thoughts (your RE, not the nurse!!) about using antagon verses lupron or using a lupron flare protocol (if that's not what they have you on already) for your next cycle - if you need a next cycle. This one may give you a wonderful BFP!!

I do have insurance covering infertilty (IVF an meds ect.) for a while. However, given these hefty doses of Follistim I need, my life-time allowance will run out soon!! We are already eyeing are home equity loan for future attempts if need be. So much for my new kitchen! (I already bought the suv last year after 3rd mc - needed a pick-me-up!)

I hope you like your acupuncturist. If he/she doesn't put you at ease, try another. They can vary greatly from one to another. I don't know if it's effect is placebo, they really need to do more studies. But, so far studies look promsing. Good for stress reduction at the very least!

I soooo have the same problem you mentioned about planning the next stim cycle in middle of the current one. I always need a contigency plan! I'm trying to stay more in the present, but it is a struggle. Went wine tasting last week-end which was lovely. (this is my off cycle) It was so nice to feel normal for a day. This process can be so enveloping. My dh has been limiting my computer time for last year. I become obessesed in finding most optimum possible next step for treatment. I'm really trying to let go of stress now and see what happens next. THis is hard for a perpetual planner!

KC I've heard from other people they had better cycles with belly injections. I was wondering if you've done any reading on the estrogen priming and lupron micro flare protocols? I'm keeping with antagon for next cycle as I got 8 good eggs last time, but will definatley consider this in future.

I really enjoy our little thread. Ally don't lose hope on this cycle - it really might work out wonderfully!

[kellyh]

Hi ladies, saw your thread and thought I'd comment. Turns out I am a poor responder, too. My history -- got pregnant naturally three times in a little over one year, all lost. Jumped ahead to IVF b/c we're doing pgd at the same time. I thought everything would go smoothly since I got pregnant so easily. Turns out I have a "borderline" FSH (10., so my dr said we'd have to be aggressive. I did the Lupron flare protocol, with 450iu of Follistim and 150iu Menopur. Got 8 follicles, 6 eggs, 1 embryo. We decided to freeze the embryo and try again to increase the # of embryos to test for genetic issues. Anyway, my dr thinks that the BCP and Lupron suppressed me too much (hopefully that's the issue!) so I'm doing the antagonist protocol. I actually start stimming tomorrow. My dr also has me on oral dexamethosone. I guess a recent study found increased success for poor responders with high dose stimming meds.
Ally, I'm like you -- always thinking of the next step. We're going to start contacting adoption agencies. Even if I do get pregnant, I want more than one baby so we thought we'd get things rolling since the adoption process takes so long. It's hard to stay in the now when you're used to getting bad news, but it's important to keep a PMA. Try and stay positive and hope that your IUI works.
This whole process is VERY expensive. Unfortunately our insurance doesn't cover any of our IVF stuff. We've already spent about $22K and are expecting to spend another $15K in the next few weeks. Luckily my parents helped us and we saved a bunch of money this last year. I wanted new windows this summer, but maybe I'll get a baby instead!
KC - congrats on your twins. It always helps to hear positive stories.
Ally & Daly - good luck with everything.
Kelly

[kellyh]

Oops, that was supposed to be a 7, not a smiley face. Not sure what happened there!
Kelly

[KC_TTC]

kelly h -

i forgot that i also did dexamethasone during the stimulation phase! thanks for that memory trigger.

as far as reading on estrogen priming....nope, don't have a clue about that. when i asked about changing the injection site, he commented that it couldn't hurt