Menopur vs Follistim (for PCOS patients)

Funnygirl34

I just had a cycle cancelled due to way too many follicles (8-10 to be exact).  Since I have PCOS I tend to overstim and it's the most annoying thing ever.  I've been on Menopur for 3 cycles (cancelled one included) and haven't been super impressed with it so far.  I've produced more follicles than I'm comfortable with and have had cysts after each cycle.  I'm curious about Follistim and wondering how I might respond to it.  Has anyone with PCOS taken both of these?  I'd love to hear comparisons of how you responded.

brooklyngirl18

@funnygirl34 That's so frustrating! I have pcos and took 50mg of clomid for my 3 iuis and each time had 2-3 follicles so my dr never moved on to injectables. I see you tried Clomid, how did you respond to that? 

Funnygirl34

@brooklyngirl18 I responded well (other than my first cycle which I overstimmed) but never got pregnant so they moved me on to injectables.  I wonder if I should request to try clomid again.

kristimh80

So sorry you're going thru this! I have PCOS and have done a low dose of Follistum 75iu and was able to get just 4 follicles and no cysts from it. I've had good experience with Follistim, so I'd say it's worth a shot if your doctor will start you on a low dose and monitor you a lot to make sure you don't over-stim. 

bethann1022

Just wanted to give you my experience since I also have PCOS.  My RE had initially tried letrozole (2.5mg first month and 5mg second month), however I had absolutely no response. She recommended I go straight to IVF as she explained the risk of using injectables (either menopur or follistim) with someone with PCOS and the very high likelihood that it would produce too many follicles and lead to cancelled cycles.  I also got a second opinion from another RE, but was told the same thing, that in both of their practices, women with PCOS overstim too easily and it is too difficult to get just 1-3 follicles.  For a real life example, my primary care NP also has PCOS, had three injectable IUI cycles all with follistim I believe and she overstimulated each time.  First two cycles produced 5 and 6 follicles and were cancelled, third time produced 4 and they allowed her to have the IUI and she had triplets.  

So I skipped injectable IUI and went straight to IVF, my RE did say she would allow me to try injectable IUI cycles, but if we got more than 2-3 follicles, we would have to cancel.  From my response in IVF, I think it would have been highly unlikely that I would have been able to get just 2-3 follicles.  I have been on a pretty low dose of gonal-f (same as follistim), my first two cycles and even with just 3 days, I produce around 10-15 follicles, they then add in the lowest dose possible of menopur and each cycle I have produced around 25-30 mature size follicles.  

I am not advising you go straight to IVF, I just wanted to share my experience, has your RE given you any feedback and suggestions on possible changes to next cycle?  PCOS is such a tricky condition to manage, for IVF it can be good that we produce so many follicles, we just have to do what we can to improve quality over quality.    

Funnygirl34

bethann1022 Thank you for sharing your experience.  This is what drives me crazy.  It's so hard to not feel like "just another patient" to my RE.  I've shared my concerns about PCOS and constantly producing more than 3 follicles and she just says "don't worry. This is normal."  I know it's normal for women with PCOS to overstim, but that doesn't mean it's good!  

kristimh80 Thank you.  I'm so discouraged but trying to stay positive.

cashewchicken

I have PCO, and like you, I've always responded fine to oral meds when I was doing medicated IUI. The first cycle I did 25mg clomid and ended up with thin lining and a cyst cycle after. My RE then switched me to 2.5 mg letrozole.  All of my cycles, I've had 2-3 mature follicles and after 6 rounds we moved on to IVF.

If I were you I'd ask to try letrozole if you want to continue with timed intercourse/IUI. I never had any cysts or thin lining issues while on letrozole.

I'm curious as to why your RE moved you on to injectables if you were responding just fine on oral meds. Typically people move onto injectables when you don't respond to oral meds- which happens for some PCOS patients. 

Funnygirl34

cashewchicken I have no idea why they moved me on honestly. I guess cause I wasnt pregnant and you can only do Clomid so many cycles.  I just called and our office doesn't even offer Femara! Ugh!  Maybe I should request another round of Clomid?

cashewchicken

How many cycles of clomid did you do? If you have tried many cycles already with good ovarian response (2-3 mature follicles), then maybe there is something else causing your infertility. If I were you, I'd move onto more aggressive treatments like IUI or IVF. 

CrystaH11

I have PCOS and my doctor has me doing a combo cycle of Femara and Gonal F. I responded to Femara, but not strongly enough. I will be starting with 100ui of Gonal after Femara cd2-6, my clinic allows the ability to reduce the number of follicles if I overstim too much so I don't waste a cycle and meds, we can fertilize them and freeze for IVF later or just discard the follicles.