The Saga of Becoming Fruitful

Archive for the ‘Infertility Learnings’ Category

SIRM’s IVF Outcome Based Reporting System

As mentioned in my earlier post re More Research About IVF in SIRM, SIRM locations do not report to SART (except for the Dallas, TX location). 2 locations - Las Vegas and New Jersey - report to CDC instead; and the rest, are not listed in SART.

I also mentioned that the SIRM website has an article criticizing the current reporting system for lacking the verifiability of a clinic’s self-reported IVF statistics and for its inability to compare “complex” vs straightforward IVF cases.

Instead, SIRM has the Outcome Based Reporting System (OBRS) which breaks down the stats into Category A-D based on relative categories of complexity (# failed IVF cycles, FSH level, #IU gonadotropin/day, # eggs retrieved) broken down by age. This is useful then when comparing case complexities.

Here is the latest OBRS for 2007-Q1-Q4.

Now, patient-me will try to eyeball where I fall under and what the table is saying…

- I think I am Category A since I have no IVF experience yet and thus no retrieved eggs yet as well. Also, I have FSH 3.5<9 and I needed 150-75<600IU/day Follistim to stimulate me.

- The stats are 58% clinical pregnancies, 8% miscarriages, 57% ongoing pregnancies and 25% multiple pregnancies based on 62 cycles. The average age from the 38-40 yo patients is 38 which means that all those who cycled are 38 years old. So I guess, this is not who I should compare myself to.

- Going worse case to the 41yo column - the stats are 25% clinical pregnancies, 33% miscarriages, 16% ongoing pregnancies and 0% multiple pregnancies based on 12 cycles. Not too different from TFC stats…

……

One disadvantage I see on the OBRS is that live births are not updated even for the earlier years where there is already sufficient time to gather information already.

Also, it is not clear which clinic/s is/are included in the stats. Having OBRS for each clinic could be more helpful for consumers like us.

Eventually, numbers are just that - numbers. Each case will be unique on its own. To me though, it does not hurt to know the numbers!

Whaddaya think?

Detailed SART IVF Stats Comparison

I’ve been looking at IVF stats from SART for sometime now and just like last Saturday’s post, I thought that was it. This weekend was the only time I stared at it long enough to discover that the IVF stats can be sliced further according to the diagnosis of the IVF patients. The per Diagnosis-sliced data was very interesting.

I lined up our known diagnosis to the Diagnosis Types in the SART database:

• Tubal Factor
• Ovulatory Dysfunction - Anovulation
• Diminished Ovarian Reserve - Advanced Maternal Age
• Endometriosis
• Uterine Factor
• Male Factor
• Other Factor
• Unknown Factor
• Multiple Female Factors - Anovulation, PCOS, Advanced Maternal Age
• Female and Male Factors -Anovulation, PCOS, Advanced Maternal Age, Low Sperm Morphology
  

I used 2006 SART IVF data from:

• TFC - Texas Fertility Center
• CCRM - Colorado Center for Reproductive Medicine
• SIRM-D - Sher Institute of Reproductive Medicine in Dallas, TX (since they are the only ones who publish to SART among the various locations of the SIRM. I’m showing how SIRM stats are presented later.)

Anyhow… Using these Diagnosis Types, I went to Select Diagnosis on the upper right corner of the SART stats (under the Diagnosis Frequency). For each of the related Diagnosis above, SART gives the stats for that particular Diagnosis alone. Here are the captured images of each clinic’s start for each of the related Diagnosis.

I summarized what I got from these captured images below:

CCRM had the most patients (91 vs 47 TFC) aged 38-40 years old with potentially related cases as mine. It might be a long shot, but this comparison may mean that CCRM has more experience on cases similar to mine. And perhaps may be able to help me more???

CCRM had the highest % cycles (78% vs 36% TFC) and most number of patients (964 vs 243 TFC) of all ages who had ICSI. This may be an indication of how much ICSI opportunity/experience the embryologists have for the clinics and thus how skillful they are.

CCRM also had the most # of cycles where PGD was used AT 234. Although TFC has 5X more cycles than SIRM-D, they have almost the same # of cylces where PGD was used (about 20). This may be an indication of how much biopsy and freezing/vitrification opportunity/experience the embryologists have for the clinics and thus how skillful they are. This may also be an indication how cutting edge or on top of technology the clinics/labs and doctors/embryologists are.

CCRM has the highest live births per cycle, followed by TFC and SIRM-D

Of course, doing this is tricky because:
1) Without clear knowledge on how each of the SART Diagnosis Types are defined, I am guessing what my diagnosis corresponds to.
2) Unless the SART Diagnosis Types are defined clearly with a common standard reference to be used by different clinics, different clinics may have different interpretation of the SART Diagnosis clinic and thus categorized their cases differently. This would be a major error in assumption when making “apple-to-apple comparison.

This is all I’ve got, so I’m going to use the information for making the comparison anyway. It is better than nothing at all.

More Research About IVF in SIRM

In my “Best” IVF Clinic post last Saturday, I mentioned about wanting to know more about SIRM. So I spent a couple of days exploring the SIRM website. This post contains what I gleaned from all that computer-staring…

This is how they introduce themselves:

LOCATION
Take note that each location is independently-owned. I wonder how much sharing of practice standards goes on really. As for a centralized management system, I wonder why that is necessary if each is independently owned. I noticed that they have set cycle dates per clinic. Could this be in some way related to the centralized management system? Anyhow, here are examples of 2008 Cycle Dates., for example:

SIRM - Dallas : Jan 17, Feb 11, Mar 24, Apr 14, May 5, Jun 9, Jul 17, Sep 2, Oct 13, Nov 10
SIRM - New Jersey: Jan 21, Feb 25, Mar 31, May 5, Jun 9, Jul 21, Sep 8, Oct 13, Nov 13
SIRM-Mosaic:
Las Vegas - Jul 14, Aug 18, Oct 13, Dec 8
New York - Jul 28, Sept 15, Oct 27
SIRM - New York: Jan 21, Feb 18/26, Mar 24/30, May 27, Jul 7, Aug 11/18, Sep 15/22, Oct 27/30, Dec 1
SIRM - Las Vegas: Jul 21, Aug 18, Sept 22, Oct 27, Dec 1

Take note also that SIRM-Mosaic is listed as a separate bullet in their list of nationwide SIRM centers. However, if you look at the addresses , the SIRM-Mosaic center shares the same address as the LV and NY clinics. What is common instead is that Dr Sher goes to both the LV and NY clinics. So perhaps the Mosaic term was added to identify the patients that are being personally seen by Dr Sher? Probably… I’ll find out as I communicate with them more…

Another thing about this multiple locations… If you check SART, only the Las Vegas, New Jersey and Dallas locations are listed in SART. The first 2 locations submit to stats to CDC while the last location submit to SART. The SIRM website has an article criticizing the current reporting system for lacking the verifiability of a clinic’s self-reported IVF statistics and for its inability to compare “complex” vs straightforward IVF cases.

I am not very comfortable with the multiple location thing. Each location may be benefiting from bearing the SIRM name but ultimately, the knowledge, skill, procedures, practices and facilities of each location will vary. So unless the individual location’s stats are published, I would not go to any other clinic. I would go where the motherlode is - in this case, it means the SIRM-Mosaic where Dr Sher is.

I wonder how much SIRM-Mosaic/Dr Sher charges for the IVF procedures compared to the SIRM-NY and SIRM-LV where he shares facilities?

I wonder if Dr Sher is fully booked???

CGH (Comparative Genomic Hybridization)
SIRM shares a lot of information on CGH. (CGH is another method of PGD (Pre-implantation Genetic Diagnosis) which analyzes all the 23 chromosomes, unlike the current standard right now, FISH (Fluorescent In-Situ Hybridization) which tests 5-12 chromosomes only.)

The information they share include their own studies and realistic expectations on this technology. One thing I noticed is an omission of 1 fact in their study that 6 women cancelled because of 0 normal eggs (as tested by CGH). Although it may sound trivial, it does de-emphasize that it is possible to get ZERO normal eggs.

Also ReproCure which does the genetics testing is just next door to SIRM-LV. (I would not be surprised if they are sister companies!) Could cycling in SIRM-LV make it possible to avoid a Staggered IVF???

I am very inspired by Polly’s strategy on Egg PBB1 - I am assuming that is done using CGH since she previously cycled with a SIRM location. (Polly mentioned in her Consult 2 of 3 that CCRM/Dr Schoolcraft said they could do that too (egg PBB1 only) although technically, a PBB2/Blastomere CGH is usually with it.)

I am looking to explore those option as well… still got to talk to DH though!

OBP (Outcome Based Plan)
This is another very interesting thing about SIRM. Here are the relevant quotes from their website:

“The Outcome Based Plan (OBP) entitles qualifying, patient/couples for whom IVF is medically indicated, to a maximum of three (3) completed IVF/ET attempts at an SIRM location . Each complete IVF attempt comprises one (1) egg retrieval procedure and as many embryo transfers (ET’s) using fresh or frozen/thawed embryos as needed to achieve a viable pregnancy or deplete all available embryos, whichever occurs first. ”

“OBP enables women/couples to be reimbursed up to 100% for in-house clinical and laboratory services associated with IVF/ET (excluding medication and anesthesia costs) if the transfer of all embryos does not result in a live birth.”

“Qualifying patients/couples pay the same up front amount regardless of their age or circumstances. The difference lies in the amount that is refunded (refund plan amount) in the event that IVF does not result in the birth of a baby. Patients may apply for outside medical financing of OBP-related IVF services (see below). Since pregnancy rates are profoundly influenced by the age of the woman producing the eggs, the amount refunded in the event that a live birth does not occur is determined by the woman’s age.”

“Over 90% of all IVF candidates would qualify for the OBP, either by using their own eggs or a donor’s. Even severe male infertility, requiring intracytoplasmic sperm injection (ICSI), or testicular sperm extraction (TESE) to obtain sperm in men who have no sperm in the ejaculate, or repeated failure to conceive in another IVF program does not preclude a couple’s eligibility for the OBP. If the woman experiences a first trimester loss, whether through miscarriage or medically indicated therapeutic abortion, the couple is still entitled to a refund.”

I wonder how expensive the OBP is. It does feel better to have a refund if you don’t take home a baby. Will have to get more information though and do the math to see if this is worth what it seems to promise.

Communication and Discussion
SIRM has a Bulletin Board that is open to everyone, not just exclusive to their patients. And the great thing is that the doctors respond to the questions. Well at least that’s who they are logging in as…

Based on my limited sampling of the BB, Dr Sher answers on weekends as well and asks the message poster (presumably his patient) to call him at his cell phone on a Sunday! Yay!

(I just got reminded of the posts I read from other bloggers that the CCRM doctors also makes follow-up calls to their patients.)

……

Alright, that is plenty of information already. I’ve got my thoughts organized on SIRM. Still need to get more specific info from CCRM and SIRM though to make a better decision analysis discussion with DH on Thurday night on this topic!

“Best” IVF Clinic?

In the last ICLW, I noticed a couple of infertility bloggers who are going to Colorado Center for Reproductive Medicine (CCRM). I dug up a bit about CCRM and noticed that their stats show very high percentages of live birth compared to TFC where I am going.

STATS TFC (SART 2006)

STATS CCRM (SART 2006)

With stats like these, CCRM must have a lot of infertility patients coming in for the higher probabilities. They even have a page in their website for out-of-state patients.

Anyway, I commented on a couple of these CCRM’ers a few weeks back but did not hear from any of them until this week (Thanks Christi!) . I was hoping I could ask them more in-depth questions about their experience.

…..

Since digging more into “best IVF clinics”, I have heard of Sher Institute of Reproductive Medicine (SIRM). I checked out their website briefly and it was cool to have their patients chatting in a forum within the website - it sounded like the patients had automatic support system within their month’s cohorts.

SIRM has multiple infertility clinics within the US. I wonder how alike they really are, how best practices are proliferated and where the famed Dr Sher most frequents  - all these and more… I still have to dig into.  The nearest SIRM site to me being in Dallas, TX (3 hours away). However, that specific site’s stats are not comparable vs TFC where I am currently at.

STATS SIRM-Dallas (SART 2006)

…..

I have also stumbled upon Northwest Center for Reproductive Sciences (NWCRS) in Kirkland, WA which has comparable performance as CCRM, but with a lower “sample size” …

STATS NWCRS (SART 2006)

…..

Should I open all the SART stats of the various clinics to find those with >25% live birth for my age group? That’s a lot of work… I don’t like to go there! So… if your infertility clinic has good IVF stats, please sound off and leave me a comment so I can explore it more.

So meanwhile, I will concentrate on learning more about CCRM and SIRM for now.  Also, I will piggy back with Polly (Hi Polly!) on her consult with the top doctors - even if her case sounds more complicated than mine.

AMA is not exactly complicated. It just is what it is… OLD!

Consultation re IVF - REFRAMING (Part 1)

We had our consult with DrH and she was very accomodating. She answered all our questions - I didn’t necessarily like all her responses, but it is good that she didn’t sugar coat it. She said that she would have discussed most of the topics anyway but appreciated the questions I sent in because it gave her an idea where we were coming from.

She said that she wished there were more couples who were more concerned on what would be done to their embryo.  She just gave me some more additional things to dig more on too…

Anyway, I wrote all that I could remember from our consult … yes I forgot the recorder… and writing it down resulted into a very long post, so I am broke it into 3 parts.

OUR INFERTILITY FACTORS
The factors we are facing are Advanced maternal age, PCOS/Anovulation and Low sperm morphology:
- PCOS/Anovulation can be “tricked” by controlled ovarian hyperstimulation (COH).
- Low sperm morphology effect would be minimized with IVF.
- So, the only factor that we cannot do anything about is the advanced maternal age - that determines the egg quality. (I got the usual talk about “women are born with all the eggs for their whole lifetime. As the woman ages, the quality of the eggs “deteriorate”.” In essence, my eggs are old… my raw materials have deteriorated.

Re my 3.5 FSH - DrH said that what it means is that for a 40-year old woman, that was good. However, it still does not compare to a 25-year old woman’s eggs who tests as 3.5 FSH. My eggs are still 15 years older!

WHAT OUR IVF WOULD LOOK LIKE
Since I am a good responder to the gonadotropin, DrH expects to be able to harvest a lot of eggs if I undergo COH in preparation for IVF.  However, she said that fertilization and viability of embryos from eggs of someone my age may not be very good, so just fertilizing a few eggs will not make sense and that the procedure will not be worth it. She also recommends to transfer back 3-4 embryos since the implantation of embryos for someone of my age may not be very good as well. (So that means the “fate” of embryos that are not transferred is a real key question.)

As for typical reasons for IVF cancellation, DrH mentioned 3:
- low stimulation
- overstimulation (typically for younger women)
- ovulated early (or early LH surge)

What to expect with Lupron?
- Before starting, ultrasound to make sure there are no cysts
- Start Lupron. Attend IVF Orientation
- Expect period
- Baseline ultrasound

DrH said that the Follistim dosage she would use for IVF would be at the same level as our 1st Follistim stimulation (that was cancelled) which showed I was a good responder. So instead of the $3K medicine cost estimate, she thinks I would only be using $1.5K worth of meds.

Progesterone is going to be intramuscular (IM) injection…on the butt? on the thigh???. (I was hoping it was just suppository even if it was a bit messier.) Uuuggghhh…

Consultation re IVF - STICKING POINTS (Part 2)

These topics are really the ones that have a lot of sticking points for me…

EGG/EMBRYO FREEZING
DrH also said that egg quality cannot be predicted and since I have old eggs, there is no point in egg freezing. They are able to assess the quality of the embryo through morphology to determine which will be transferred.

I don’t know if I picked up correctly on the discussion on Day 3 vs Day 5 transfer…

If there are only a few good Day 3 embryos, transfer is usually done on Day 3.  If there are more than a few good Day 3 embryos, those can tested for PGD (preimplantation genetic diagnosis) or embryo screening.

DrH clarified that PGD is taken on the Day 3 embryo and results will be in for a Day 5 transfer. (So I am just realizing it now that if PGD is desired, that would automatically mean that it would be a Day 5 transfer - unless there is only a few good Day 3 embryo which forces a Day 3 transfer???)

On what is done to embryo and blasts that are not transferred - they are either frozen or discarded.  They will freeze only those that are judged to have a high chance to survive the freeze/thaw.  They give the blast up to Day 7 (which I suppose would be enough time/chance for the rest of the “lesser” blasts to survive before arresting) and will discard them.

Not sure if I captured that last statement accurately but that sounded a bit harsh… If I may quote from their clinic’s literature - “Only embryos that have fertilized abnormally, stopped dividing or have completely fragmented are discarded.” “Each embryo in our IVF laboratory is treated with the utmost care and respect…” DrH also mentioned that they are actually lean more leniently in judging the embryos to be frozen.

PGD OR EMBRYO SCREENING
DrH said that through PGD, they are able to determine if there are chromosomal abnormality (for 9 chromosome pairs only, not the 23 pairs) in all the embryos. This will isolate which embryos that have normal chromosomes from embryos that have abnormal chromosomes which lead to miscarriage. DrH also said that although PGD reduces the probability of miscarriage, it does not increase the pregnancy/live birth success rates.

The PGD is able to determine the gender of the embryo even at that point. (I read somewhere that there are some who practice gender selection using this method.)

DrH also said that as PGD will not be able to screen all chromosomes and I am of advanced maternal age, she recommends that if I do get pregnant, to have an amniocentesis for all the chromosomes since they cannot screen for Trisomy 21 (causes Downs syndrome) or Trisomy 17 and the like. (I don’t think I will do that since however the baby will be, I will accept. I will not terminate.)

I need to dig more into these.  Please pray for wisdom and discernment that we make a decision that is according to God’s will.

Consultation re IVF - STATS AND RECOMMENDATIONS (Part 3)

STATISTICS
DrH said that normal (fertile) couples chances of getting pregnant are 20% in 1 month, 50% in 3 months, 75% in 6 months.

She said that an infertile couples chance of getting pregnant is still even less than that with IUI - which I have seen different numbers from various websites ranging for 6-17%.

DrH showed us national stats on live births, miscarriages, own vs donor egg  - all by age ranges. She believes though that 40 year old stats are closer to the next age range of 41-42 (than with 38 where it is in the same age range).

She said that their clinic’s stats are generally much higher than the national stats, except for the advanced maternal age where they are still higher than national stats but not much higher.

(I’ve actually seen their stats from SART so I knew what she meant when she made relative comparisons of their stats to the national stats.  Their clinic is by no means the highest in the US though…)

IT TAKES ONE GOOD EMBRYO
DrH mentioned 2 successful advanced maternal age cases.
- One was 45 years old with 20 retrieved eggs that resulted to 19 fertilized embryos. PGD on all embryos showed that only 1/19 was normal and that was transferred. Now that patient has a daughter.
- One was 40 years old who had 1 failed IVF (without PGD). She went for a second IVF and out of the retrieved eggs and fertilized embryos, there was one lone embryo that tested well in PGD and was transferred. The lady’s beta is now being monitored.

OTHERS
DrH echoed back that some studies showed acupuncture to help but she would stay away from herbs.

She said that the meds would have no effect on my breast cysts.  (I still am not 100% on that.)

POSTMORTEM ON RECENT IUI
DrH said that our recent IUI (second Follistim stimulation) was perfect according to her - but it still did not succeed.

Regarding the first Follistim stimulation which got cancelled due to OHSS (did not push through for IUI)… DrH said that it could not be converted into an IVF anymore since that decision should have been made in Day 8 so that antagonists are prescribed in order to convert into IVF. We were already past Day 8 when the impending OHSS was suspected.

DrH also clarified that they make calls until 6pm (only their incoming phones are turned off at 4pm so that they can do their housekeeping and return calls within 4-6pm). So I would have received a call re my results by 6pm.

She also said that she typically has post-mortems after failed cycles.

RECOMMENDED NEXT STEPS
I am on Day 50, so DrH said that when we are ready…. She would give me
- Provera to induce a period
- Skip the usual birth control pills (since I have irregular periods)
- Start me with Lupron
- Then proceed stimulate.

If IVF failed despite high fertilization rate, DrH said that she would not not recommend another cycle of IVF.
If IVF failed and there was low fertilization rate, she would say 2 things - 1) go for PGD or 2) go for donor eggs.

DrH recommended that we go through the IVF Seminar which is scheduled on Oct 8.

LASTLY…
DrH hugged me! I did not expect that but it felt good that she had no qualms on hugging.
DH thinks that mentioning the hug in this post is sooo trivial.  Man, are men clueless…

Well … that’s a lot for now… more data, getting a clearer picture, still need to dig more on specific topics.

Then need to digest info, step back, reflect and weigh, pray and decide.

IVF Indecision is a Decision

I don’t even know if that title makes sense…. but it has been almost a 7-week break…

We have our consultation appointment with DrH on Tue. I hope she received the set of questions and I hope she has read them.

Meanwhile, I have a new friend (who turns out to be a fellow infertile) and she said that sometimes, less options are better.  In our confusion and indecisiveness, I could relate to that because our choices are now boiled down to these 3 -
1. IVF
2. Adoption
3. Child-free

Narrowed down. And yes, there are still 3 options.

I heard something from someone that the “cure to confusion is action. Do something and fail. Or do something and succeed. It removes the ambiguity. Whether you fail or succeed, you are moving forward since you are eliminating alternatives.”

Should we do IVF for the increased probability (still a probability, still not a guarantee) of having our own biological child?

Should we go through what is humanly possible before we accept that our “only hopes” are to either adopt or to be childfree?

Should we make the decision to be child-free NOW (without trying IVF)? And save ourselves from heartbreak and the heavy financial burden? Should I resign myself to the “death of a dream” now?

My biggest fear for the last option is that I will regret not knowing whether we could have had our own child had we tried IVF.  The many “what-ifs”….

We have decisions to make and we are vaccilating up to the last minute.

How to Maximize the Use of Follistim

Follistim is an expensive medicine - it costs about $0.78 to $1.3 per IU. So it is very important that as much as possible everything is used, nothing is wasted and any Follistim leftover maximized for use. Here are some things to keep in mind in order to maximize the use of this precious drug.

1. Understand that your RE will make an assumption on how much you will probably consume based on your factors (age, reproductive health and history, etc) and thus what you will be given a Follistim amount that will be just an estimate. How much Follistim you really need is not known until you actually go through your cycle since your daily dosage will be adjusted based on your own response. Be prepared to buy more or store leftovers.

2. Know the official statement from the manufacturer by heart! You will need this.

Follistim Pen® with the Follistim® AQ Cartridge may be stored by the patient at 2–8°C (36–46°F) until the expiration date, or at 25°C (77°F) for 3 months or until expiration date, whichever occurs first. Do not freeze.

Once the rubber inlay of the Follistim® AQ Cartridge has been pierced by a needle, the product can only be stored for a maximum of 28 days at 2–25°C (36–77°F).

Protect from light. Do not freeze.

3. Know your own cycle day count by heart as well. Be ready to make some counting or calculations. Do not assume that RE/staff is on top of all the details of your case.

(I looked at my RE’s clinic stats in SART and they have 675 IVF cases in 2006, roughly 2 cases per calendar day. I suppose this is why they could not (or do not?) go to that level of detail (unless called upon to do so). Meanwhile, if you want more attention to details you might see it on smaller clinics. On this other hand though, I am thinking that you will run into the concern of “not having a lot of experience”. I guess you choose your “poison” - now that does not sound good.

Anyhow for me, I would rather have the attention risk than the experience risk. My thinking is that I can play a part to minimize the attention risk by being an informed patient whereas, I cannot do anything about my RE’s experience! My best choice though is if both are low in a particular clinic.)

4. Ask your RE questions. Call them if you must! There are no stupid questions (only stupid answers!). And… you are paying them good money, you have the right to ask questions.

5. Follow the manufacturer’s instructions on storage and usage - intact or pierced. In my “own” words since I am graph-and-table person (warning!), this table should make it even clearer:

(If you just want the numbers (follicle sizes) go to the Follistim Response page.)

I do wonder though why 28 days after the cartridge’s rubber inlay is pierced? Do they have empirical data on its impact to potency and other effects?.

It’s just very coincidental that the typical cycle is 28 days as well. As if the drug is not intentionally designed (formulated) to reach the next cycle - so that we buy another set? Conspiracy theory starting…but oh, well, that is another topic.

(NOTE TO SELF: Contact Organon V at 1-800-241-8812 Monday through Friday 8:00 a.m.- 5:00 p.m. EST. I will update this as I get more info.)

6. For intact (unpierced) Follistim cartridges that you are not going to use anymore for some reason - maybe you already got pregnant (good for you!), past the 1st trimester, on a TTC break or have closed your TTC book - there are a couple of things that you can do with them:

• Sell it over the internet. I am aware of at least 1 website.
• Advertise it in the internet - your blog or related forum. You can sell it or give it away.
• Donate it to your RE’s clinic. That way, you can help others too.

Make sure you stored it properly!

I guess a lot of these are common sense but we can as easily naively trust our health providers and unwittingly think that all their orders are flawless. So, I think I cannot over-emphasize all of these! Also common sense as they are, the principles behind most of them can also be applied to whatever medicine you are prescribed.

Methinks there is no substitute to being an informed patient.

Meanwhile, do you have any other tips on what to do to maximize the use of the precious Follistim?

10 Things About Follistim

I noticed that almost half of my blog visitors are looking for information regarding Follistim. So I figured it may be helpful to some that I put this together based on what I learned about it, what to expect, what Follistim dosages are, etc. So here goes…

Follistim’s generic name is follitropin beta.

1. Follistim is a recombinant follicle stimulating hormone (rFSH) versus the human menopausal gonadotropin (hMG) such as Humegon, Pergonal, Repronex and Menopur which are extracted from the urine of menopausal women.

I think the FSH term is self-explanatory, but as for the term “recombinant”? I am not a scientist but what I picked up is that it is a genetic engineering process that uses Chinese hamster ovary (CHO) cells in the manufacturing process. I am sure it is a controlled manufacturing process, but just the thought of injecting myself with something “mixed” with non-human feels creepy.

I guess we do choose our own poison - non-human derivative or human menopausal urine? And no, I am not making these up … see these sources. (a) (b) (c).

Of course, Organon’s website indirectly states “mammalian” host cells vs directly stating Chinese hamster ovary cells! I suppose they don’t want to freak us out!

2. Follistim is prescribed to women with ovulation problems. Typically, women who are clomid-resistant or have PCOS use Follistim. (I have read about other women having protocols that includes clomid and Follistim, though.)

Follistim is also used for ovarian stimulation in preparation for fertilization - usually using assisted reproductive technologies (ART) such as intra-uterine insemination (IUI) or in-vitro fertilization (IVF).

3. Follistim is what it is called in the US. The rest of the world calls it Puregon. They are made by Organon, a Schering Plough company.

Other fertility drugs that are used for similar results are:
- Gonal F (follitropin alfa, rFSH) from Serono
- Bravelle from Ferring (urofollitropin, highly-purified human-derived FSH or hFSH)

4. Follistim is usually used together with human chorionic gonadotropin (hCG such as Ovidrel or Pregnyl) to trigger ovulation.

Follistim is also usually used with an gonadotropin releasing hormone (GnRH) agonist and/or antagonist for IVF protocols. GnRH agonist such as Lupron blocks the production of FSH and LH, and is administered 10-20 days in the previous cycle. GnRH antagonist such as Ganirilex/Antagon or Cetrotide blocks the effect of GnRH, and is administered on the later part of the stimulation cycle. (a)

5. Follistim dosages that you will be prescribed is an ESTIMATE and will latter be dependent on the individual response.
Your Reproductive Endocrinologist or Fertililty Specialist has some baseline dosages in mind based on your individual case and thus will estimate how much you will be asked to order from the pharmacy. The protocol is started on between cycle day 3 (CD3) to CD5.

6. Follistim requires close response monitoring by sonogram and Estradiol blood test every 2-3 days.
Sonogram will show the endometrium lining thickness and the the follicle count and size. A gradual increase is desired from CD3 to CD14. (In my case, my RE wanted to see endometrium lining thickness greater than 9.5mm and mature follicle (size>18mm) count of 3 to 5 follicles before we trigger on the CD13-14.)

Blood work is needed to read the Estradiol (E2) levels as well. As a rule of thumb, it is said that for every mature follicle, expect 200pc/ml. (In my case, the desired level was 1500 pc/ml.) Levels greater than 3000 pc/ml are usually associated with Ovarian Hyper Stimulation Syndrome (OHSS).

See a sample of Follistim response data vs dosages here.

Throughout the protocol, the dosage may be adjusted or “titrated” based on your response to the Follistim. For some, a cycle’s dosage may be too low or was increased too late that the right size and number of follicles is not produced. For some, a cycle’s dosage may be too much or was decreased too late that results to Ovarian Hyper Stimulation Syndrome (OHSS). If the baseline or adjusted dosage works, well and good. Do not be surprised though if it does not work and you will need another Follistim cycle.

Just a note though that there is anecdotal information that one patient’s response could vary from cycle to cycle as well.

7. Follistim is expensive … but DesignRx can give you a big discount.

8. Follistim has an expiration - 28 days from piercing or 3 months at room temp or until expiration date when refrigerated.
How to maximize the use of your precious follistim? Can you use expired follistim? See tomorrow’s post.

9. Follistim has been in use for more than a decade now.
It was first introduced in 1995 in Europe.
It was introduced in 1996 in the US but the Follistim® AQ Cartridge was FDA approved only in 2004.
It was introduced in 2005 only in Japan.

10. Follistim is expected to become cheaper by 2015.
This is when Organon’s Follistim comes off patent. Expect the influx of generic manufacturers to lower the price by then!

Anything of key significance I missed, fellow Follistim-users?