16 replies to this topic

[Nickster]

Hello all: Back from vacation (our last big hurrah and starting IVF now. This is our first attempt at anything; straight to the big time I guess LOL. Meds include Lupron, then adding Puregon and Menopur. My question is for anyone who has been taking Puregon. What dosage were you prescribed? From the manufacturer's literature, it seems the usual dosage to start with is 125IU to 225IU - my doc has me starting at 400 IU and I'm worried about this. Read from the drug mfr that the maximum dosage they've "safely" tested has been 450IU.

Any feedback would be much appreciated - on the Puregon or any of the other two meds. Our clinic hasn't been very forthcoming, despite my queries as to side effects etc....they've been very general in their answers.

[Sandibeach]

I started with puregon, then added repronex. i was on 250 of puregon and 75 of repronex, but I do know of women who where on 600 of puregon two times a day - it seems if you are a poor responder, they up your drugs. I respond well, so I got a normal dose. I'm sure the doctor has a reason for giving you such a high dose, they want to jump start you - they'll lower the dosage if they find it too high after the first u/s. I wouldn't be worried. I didnt notice any unusual side effects...bloated and such, but otherwise more or less fine.

Good luck!

[Silke]

From what I understand, the dosage typically depends on your age and the way you've responded to meds in the past (e.g. clomid, serophene). Sometimes they add additional meds with FSH to see if they get a better response. Sounds like that's what they're doing to you since you're also taking menopur.

Since I'm over 40, the typical starting dose for me was 300 IU (puregon - no other meds for stims), but they increased it eventually to 375IU. A few of the RE's I talked to said there were studies that showed that increasing to higher doses (above 400IU) wasn't necessarily effective since your body has a threshold of the amount it can absorb/ use. So the "extra" meds are just wasted (although we're paying for them!). But each individual is soooo different. I've seen some doses going up to 600 (with a combination of stims).

Everyone is different and reacts to the meds differently and I think the first IVF cycle really acts to check out how you respond to the stims, etc. It's an "educated" guessing game. Yup, and we're paying a ton of $$ for it.

It's too bad your clinic isn't answering your questions directly. I find if I don't get specifics on everything they do I end up second guessing everything and not trusting the treatment. Keep asking!

[Nickster]

Thanks very much, Silke and Sandibeach. Since this is our first shot at it (no pun intended), it's unknown how I respond. All prelim reports indicate I'm "normal" and levels are all good...it's the being 42 that's the problem, apparently, LOL. It's all rather unnerving - being prescribed meds you know nothing about, being asked to sign consent forms and reading only about the potential negative side-effects. Eek! Very glad to hear it's likely not out of the norm; guess I should be glad they're taking the aggressive approach. Appreciate the threshold info - I may ask them about this since the Puregon was the most expensive med of the lot (ouch - thank goodness for insurance!!)

Still asking the doc for some more info, though, especially re: OHHS and potential links to high doses of gonadotropins. Just drafted up a letter to them, detailing a bunch of questions I need answered. I agree; you have to keep asking for information at times; it's so frustrating. This is foreign ground but sometimes they act like you should automatically know what's going on. Grrr. There's already enough to stress about, isn't there?

As a humorous aside, has anyone been able to convince their clinic to prescribe placebo shots for their DH's? I keep telling mine he should have to participate, if only out of sympathy

[Silke]

Can anyone tell me why the RE's are using lupron for the over 40 crowd? My RE doesn't do that and the nurse told me it was for younger patients so they wouldn't overstimulate when they went on the puregon/ gonal-F. But I've noticed a lot of >35's use this..... I went straight to the stims on Day 3 after a Day 2 ultrasound and blood test to check antral follicle count and FSH.

Nickster - I know what you mean about this process being sooooo stressful! Man, sometimes I wish I would just stop asking questions. It seems the more I know the more I stress out.... and it stresses me out not to know! (Does this make sense?) It's a catch-22 really. Also... why are you going straight to IVF if you don't mind me asking?

[Nickster]

Can anyone tell me why the RE's are using lupron for the over 40 crowd? My RE doesn't do that and the nurse told me it was for younger patients so they wouldn't overstimulate when they went on the puregon/ gonal-F. But I've noticed a lot of >35's use this..... I went straight to the stims on Day 3 after a Day 2 ultrasound and blood test to check antral follicle count and FSH.

Nickster - I know what you mean about this process being sooooo stressful! Man, sometimes I wish I would just stop asking questions. It seems the more I know the more I stress out.... and it stresses me out not to know! (Does this make sense?) It's a catch-22 really. Also... why are you going straight to IVF if you don't mind me asking?

[Nickster]

(whoops - hit reply and just re-posted your comment Silke )

Why straight to IVF? Don't mind you asking at all

At the risk of sounding simple, I think it all boils down to age. My GP did the referral in late April and we got our first consult within a month in early June, straight into assessments, follow up meeting early July and they decided to go the IVF route. At the initial consult, IUI was discussed as an option for 2 cycles, then on to IVF. They did say the success rates can be better with IVF (more controlled situation? ability to implant more embies to combat m/c rates over 40?) so DH and I are actually both good with going for the gusto. At the end of the day though, when we had our meeting to review our baseline results, the only option presented was IVF. All my levels are good (the caveat being "for my age") and DH's guys are good little swimmers with lots of 'em. Our Doc is a funny guy - in basic terms he said you can drive or you can take a plane - the plane's more expensive, but in terms of our age, you might not want to take the scenic route by car LOL. Let's hope he's right!!!

And Silke, I completely understand how you feel - I feel like I'm bugging them by asking questions, but then I stew over things that I don't know and end up feeling a big angry that they aren't laying it all out for me in simple terms. I've spent more time googling everything and would rather be focussing my mental energies on being positive for the big task ahead, rather than trying to understand what the medical technicalities are. I suppose they've seen it all, done it all, and maybe they lose touch with understanding that for many of us, this is completely uncharted waters. At the end of the day, I will keep asking questions as this is far too important.

It's all happening so fast, I'm still trying to absorb it all. Not only the whole procedure, the meds, the questions, etc etc but the whole "big picture" aspect of embarking on a new life for DH & myself after so many years of just "us". It's overwhelming at times and I'm trying not to feel like I'm just being swept along (or under LOL) . I'm still trying to get over the shock of spending $6k on meds that sound very daunting, plus another $7800 for the actual procedure. From the threads I've read in this forum, it sounds like our place is more expensive than others, but we're crossing our fingers that they know what they're doing. (for someone who likes to be in control, this is tough)

Thanks to everyone for all the info - you are lifesavers and I am learning so much. DH is trying his best to be supportive, but it helps to connect with others who truly 'get it'. Hugs to you all.

[sdmann]

Thanks very much, Silke and Sandibeach. Since this is our first shot at it (no pun intended), it's unknown how I respond. All prelim reports indicate I'm "normal" and levels are all good...it's the being 42 that's the problem, apparently, LOL. It's all rather unnerving - being prescribed meds you know nothing about, being asked to sign consent forms and reading only about the potential negative side-effects. Eek! Very glad to hear it's likely not out of the norm; guess I should be glad they're taking the aggressive approach. Appreciate the threshold info - I may ask them about this since the Puregon was the most expensive med of the lot (ouch - thank goodness for insurance!!)

Still asking the doc for some more info, though, especially re: OHHS and potential links to high doses of gonadotropins. Just drafted up a letter to them, detailing a bunch of questions I need answered. I agree; you have to keep asking for information at times; it's so frustrating. This is foreign ground but sometimes they act like you should automatically know what's going on. Grrr. There's already enough to stress about, isn't there?

As a humorous aside, has anyone been able to convince their clinic to prescribe placebo shots for their DH's? I keep telling mine he should have to participate, if only out of sympathy

Nickster - I like the idea of placebo shots for dh! One other thing that determines the amount of Puregon would be your antral follicle count. I was on Puregon for my last IVF and responded really well - good luck to you!

[Nickster]

well there you go - what a newbie I am - don't even know about the antral follicle count. Like I said, it's all been so fast, this is just another example of learning on the fly. Does someone have a Dummy's Guide to Fertility LOL??

[Sandibeach]

Nickster,
Don't appologize for anything...after your first IVF, you'll become an expert and still learns lots as you go ahead... only from experience. My clinic was pretty expensive too... one round of IVF with ICSI is $8200 plus meds... luckily for insurance. Also just so you know, Puregon, there is approximately 100 iui more in the tube than indicated, the pen will stop you when it's empty. I've saved some puregon this way, without having to open up a new vial for 25 iui, etc. All the best!

[Silke]

I agree with Sandibeach. Don't apologize. There's so much to learn.

Good tip Sandibeach about the extra 100IU in each of the puregon packages. I actually started buying the 300 IU packages only, even though I was on such high dosages that I had to give myself 2 injections some nights to make up the dose. I didn't mind the extra shot, and liked the idea of getting an extra 100IU for each puregon package I bought!

SOmething else to remember is don't get too focused on the numbers (e.g. antral follicles, # and size of follicles growing, etc.). This is my tendency and I became absolutely obsessed with it on a daily basis. At one point, I stopped wanting to know all the details b/c it was stressing me out too much! Anything can happen, no matter what the numbers. Stay positive. (ha, if my DH read this he would tell me to take my own advice!)

[sdmann]

Silke,
Great advice - I think there's a point where you just have to have faith and trust the RE's. It's a delicate balance between educating yourself and stressing over the details that are best left in the experts hands - easier said than done.

... you never have to apologize Nickster. All the best!

[dove]

Hi,

It depends on your age, height, weight how much they start you on usually. I started on 200 and I was way over stimulated. This time they are going to start me on 175 with a different protcol. My RE: says I'm what they call a cheap date. I had a friend who ended up on 350 but she was a few years older and also taller than me, so it all depends.

[Rosa]

Hi Silke,

I was on lupron and was 42 at the time (now 43). I was on the antognist protocol but over-stimulated and produced crap eggs (32 eggs, most immature and a record for a 42 year old at Create my clinic). So even though this protocol is for poor responders or older ladies, it doesn't fit the bill for everyone. I was put on the long lupron protocol and did well on it - 18 follicles, then eventually 12 embryos! I didn't over-stimulate.

The other point to note is that the antogonist protocol has a slightly lower pregnancy rate associated with it. Not sure if it's the protocol or the fact that the protocol is used for older ladies and poor responders.

[Silke]

Interesting Rosa! Thanks for giving me that info! We're all soooo different. I always wondered about the lupron thing... I don't think I would qualify for that since I definietly didn't overstimulate. I only ended up with 2 fertilized embies (3 eggs retrieved from 5 folli's), but they were damn good (Grade1). I was so happy after a very sad cycle. My beta test is next wed, but I've lost hope since I can feel AF coming on...

[Nickster]

Silke - I will be hoping AF makes a wrong turn, car breaks down and she gets lost . If there's one thing I've already taken from this site, is don't lose hope.

Sandibeach - thanks very much for the tip about wringing every last drop out of the Puregon...my insurance provider will likely also thank you LOL. Not crazy about the extra shots, but what's the diff between 3 or 4

Rosa - thanks for your post about the long Lupron protocol; it gives me some hope that that's what we're starting with. Fingers crossed. Anything to avoid overstim; the constant message about OHHS is rather unnerving!!

Have a great day, ladies.


Nickster

[dove]

I was on the antagonist protocol the first time and because I overstimulated on such a low dose of puregon, they have now decided to put me on the long lupron protocol. The cetrotide was not enough from keeping my estrogen levels from going through the roof. I was told that if you are over 36 they usually start you on the protocol. Your first ivf is really used as a diagnostic tool to see how you respond to certain drugs, if the sperm can fertilize eggs etc and if you need to do it again they can tweak it accordingly. (hopefully it will work for you the first time!)