How to Maximize the Use of Follistim

Written by Arpee on August 19, 2008 – 5:38 pm -

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.

In my case where I am of advanced maternal age and have been annovolating for more than a decade, I was adviced to order a 900IU cartridge and a 300IU cartridge. (I paid about $900 for those.)

My RE expected me to produce only a few follicles at a “high” dosage due to my background. She did not expect my actual prolific reaction! I ended up using 650 IU for that first cycle so I actually punched through the 2 cartridges.

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.

My first Follistim cycle was canceled because of my prolific response to the dosage and had all the signs of an impending OHSS. So my RE told me to just refrigerate the Follistim leftover.

When I was ready to do my second cycle 34 days later, my RE prescribed a lower dosage and told me to use the Follistim leftover. I used it for 3 days and in my first monitor, it seemed like I was having a normal response. On my 5th day of stimulation, I was reminded of the above Follistim literature statements from reading it before the 1st cycle.

At first, I was thinking that it must still be okay since my RE told me to use the Follistim leftover. I assumed that my RE would not actually tell me something that is detrimental to my case. I assumed that my RE was on with all the details of my case and thus, if the Follistim leftover was already expired, that my RE or the staff would let me know.

(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.

I could not stay put though. I did not have peace. So I called the next day and asked about it. Long story short, I should not have used the Follistim leftover and I should use a new cartridge (which they provided free as promised previously). So, I started a new cartridge on my 6th day of stimulation.

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:

Cartridge Rubber Inlay	Storage Temperature	Usable Until
New	2-8 C (36-46 F)	Expiration Date (on cartridge)
New	25 C ( 77 F)	3 months or 90 days
Pierced	2-25 C (36-77 F)	28 days

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

In my case, having used expired Follistim for 5 days still seemed to have worked as shown by my follicle sizes graphically shown below (I warned you!).

I don’t know if the expired Follistim was really still working with its full potency or or if its potency has already weakened. I don’t know if the later new Follistim compensated the effects. I really don’t know but somehow it “worked” for me in growing these follicles.

I read from other ladies in one of the forum who also stimulated fine and some even got pregnant. That is not to say though that you should take the chance on expired Follistim!

One lady wrote in one of the forum something like, why try to skimp on $150-900 when your IVF costs thousands of dollars? Really true for IVF (maybe not for IUI though because that “skimped amount” could easily be 5-50% of the overall IUI cost). Too small a price when you consider the cost of the overall process. For a procedure as expensive as IVF, you would like to have all the optimal conditions in your cycle - and that includes “fresh, unexpired” medicines. I think this is what they describe as “looking at the forest instead of just staring at a tree”.

Also, I surfed the internet for “what happens if expired follistim is used” and some variations of that phrase - didn’t see anything (at least on the 1st page of the Google search results). One lady in another forum wrote that after 28 days of the rubber inlay is pierced, its potency is affected. Could not find her source though.

Meanwhile, I just really hope that there is no effect to the quality of my already “mature” eggs! No X-mens, please God…

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?

Tags: follistim, Follistim leftover
Posted in In Between Cycles, Infertility Learnings |

4 Comments to “How to Maximize the Use of Follistim”

Lifeslurper Says:
August 19th, 2008 at 9:33 pm
I have a fridge full of Puregon (Follistim) the clinic seems to hand it out with ease - clearly we pay no where near the outrageous sums for it as you guys do, it is included in the upfront cycle costs (and is not itemised) the upfront payment is $4210 AU for a basic down-regulated (long cycle) which means the entire cycle up until egg pick up. The cost of hospital on the day of pick up is not included…so the Follistim is included in that amount. Some of my FSH was received back in January and has an expiry date of the year 2010. For my last cycle I was waiting for the next lot to be mailed to me, I was forced to use some of the old stuff. The nurse had me check the expiry and said it was okay (none of it had be used or opened) I went on to have my worst stimulation of 4 cycles. I secretly wonder about this a LOT. How much had using older FSH affect my cycle?
Baby Smiling In Back Seat Says:
August 20th, 2008 at 11:33 pm
Here from IComLeavWe…

Thanks for such a comprehensive post! I’m sure it will be helpful to many people. I use Gonal-F not Follistim, but the same principles probably apply. My only other suggestion would be to use the largest-dose cartridges first in case you end up not needing all of it. I’ve ended up being able to carry over some unused pens to the next cycle. Since I pay for my own meds, I try to avoid ending up with half a pen that I can’t use the following cycle!
Arpee Says:
August 21st, 2008 at 11:56 pm
Lifeslurper,

Good for you, you get them drugs cheaper! Send the extra ones my way

Anyway, as women and as “infertiles”, we have a bad habit of second-guessing. I wish we don’t but that’s just the way some of us are.

Anyhow, I hope the last one you used was not yet pierced through. the literature states that for as long as you have not pierced the vial yet, then it can last until 3 months in room temp and until expiration date if refrigerated(in your case 2010).

Otherwise (if already pierced through), it’s supposed to be no good for your next cycle already.

I guess we have no choice but to rely on the drug maker’s literature, right?
Arpee Says:
August 22nd, 2008 at 12:01 am
Great suggestion, BabySmiling!

It is always good to use up the largest volume cartridge first before starting with the lower volume ones. That way, the latter may be saved from being pierced through and still good for the next cycle or through expiration.