Moving onto injects/millions of questions

lebradford · May 2014

Back story: I had my WTF appointment on Tuesday about my poor response to Clomid these past two cycles. I had to stairstep both times, to the highest dose my RE gives, and both times I still took a kind of long time to ovulate and only had one follicle. Because of that, we decided to move on to injects a cycle earlier than we originally planned. So, as soon as I get my "official" BFN tomorrow, stop endometrin, and get a period we are starting our first injects cycle! I spent Tuesday and Wednesday pretty upset, but now I am moving into the excited/anxious phase, which brings me to some questions.

I'm using Follistim because my nurse very generously gave me 600iu in samples. Here are my questions:

I've heard you guys talk about having overflow in the larger vials/containers/whatever you call them. How do you know how much you have left?? Do you just keep track of how much you have used? Does the pen not let you click up to, say 100iu, if you only have 75 left??

Also, I see that the pen kit came with, like 8 needles, and the medication came with a few as well. Will I ever run out of needles? Can you order them separately?

If I need another injects cycle, do I re-use the same pen?

How long do leftover meds in an opened container last?

I know this will vary a lot by person, but how many iu of FSH (Follistim, Gonal-F, etc.) did you need per cycle for IUI? Any comparisons between your response to Clomid and your response to injects? I'm not sure if I should be more worried about not responding or about over-responding. :-p

I'll also take any other general calming thoughts or advice you have on injects cycles. ;-) Thanks!

Rachaeleigh · May 2014

I just keep track in my head off how much is left and I've used about 900iu each cycle so far

Yes, the pen is reusable and no, you'll never run out of needles!

Good question about the pen allowing to click past a certain point!

I've only ever used follistim, so I don't have a comparison to clomid

Good luck!

pmpknbride · May 2014

Hi! I just finished my second cycle of follistim, so let me see how many of your questions I can help you with! There is probably about 100ius of overfill I believe, we just kind of keep a tally but you can use all of the follistim to the last drop. Your pen will stop when you run out, you then switch the cartridge, put a new needle on do a second injection, your pen will know how much more you need as it'll be positioned where you left off. You can reuse the pen next cycle, but my pharmacy sent me a new one for free with the prescription as I'm sure yours would too. I haven't run of needles yet, thanks to them sending a new pen with 8 extras. I am not sure about expiration times, I use just about one vial per cycle so I haven't really thought about it. I did anywhere from 50 to 75 IUs per night, the first cycle I did 11 nights, the second cycle I did 13 nights. My clomid cycles weren't monitored, but I only ovulated twice out of 5 cycles. I had 1-2 follicles on Femara, and 3-4 on follistim. I wouldn't try to worry about over/responding, they will monitor your levels and adjust accordingly. I have. PCOS so we low and slow, it wasn't too bad, the hardest part is trying to stay sane with all the extra monitoring appointments, it was pretty much every other day and then everyday the last three days, I was exhausted. Sorry for the Run on, I'm on an ipad? Good luck!

Pintobean39 · May 2014

Everyone else has answered your questions so I'll just give you my experience. I mostly use Gonal first of all and I normally only get 60-75iu left over from a 300iu pen. My first cycle I prob used about 1500 iu and by the time my 3rd got here I used about 2500iu. I'm not sure if I'm considered a slow responder all cycles were 10-12 days. I've never taken Clomid so I'm not sure the difference but my Dr told me clomid was of no use for me.

Good luck!

ky29 · May 2014

I just want to confirm the leftover dosage question. It will let you dial up the dose, even if there's not enough in there. It just won't go all the way down, which then will show you what you still need. So make sure to check that it clears to zero after each injection.

lebradford · May 2014

Thank you so much, everyone!!

@ky29‌ Thanks! I was going to ask that clarifying question!

Follistim is so much more expensive than some of the other meds. I only picked it because of the free sample. I hope we don't end up needing too much more than the 600iu. Has anyone done any research on the best pharmacy for OOP Follistim?

Pintobean39 · May 2014

Follistim OOP at Alexandra's twin is $259.90 and Gonal F is $256.00 (after rebate) at Freedom Pharmacy for 300iu. So far I've found Alexandra's and Freedom to be very comparable on prices except for my ganarelix which is $40 cheaper at Alexandra's. The shipping is what you have to watch. Freedom is free shipping regardless of the amount purchased and Alexandra's is only free if over a certain amount (I'm thinking $500) otherwise it's free for 2 day shipping. I like the fact that I can call Freedom at 2-3pm and order meds after monitoring and my Dr looks at my chart and makes changes and have it at my house in the morning. I've been able to only order what I absolutely have to have so I don't have a lot left over. The rebate per 300iu pen is about $40 and it's so easy to do and comes back quickly. I fill it out after I order all meds and I get it back before my credit card is even due.

My 1 problem with Alexandra's is they won't ship without a signature. Since I'm at home and it's shipped residential the time it arrives varies a lot and days like today I wanted to go to the gym but my morning shipment didn't arrive until 2pm so I wasted all day waiting on a shipment.

I have a spreadsheet (the accountant in me is coming out) and I told someone else I'd post it but I keep forgetting. It's compares the meds at 4 different pharmacies. I'll try my best tomorrow to post it when I'm sitting at my laptop.

ETA: I've always been told Gonal and Follistim are interchangeable because they are the same drug just different brands.

Pintobean39 · May 2014

NariaDreaming said:

lebradford said:

Thank you so much, everyone!!

@ky29‌ Thanks! I was going to ask that clarifying question!

Follistim is so much more expensive than some of the other meds. I only picked it because of the free sample. I hope we don't end up needing too much more than the 600iu. Has anyone done any research on the best pharmacy for OOP Follistim?

Best price I found was on Alexander Twin. Someone over on IF made the holy grail of IF med prices by pharmacy. Can't remmeber who though.

The person that did that also included the uk company but some of their prices were way off which is why I created my own spreadsheet. I'd be glad to create one next week with all of the meds that are commonly used and if you wanted to add it to newbie info. I just did one for the meds I'm using but I'd be glad to add more. I know when I first started meds some of this info I wish I'd known.

gsancho · May 2014

Looks like your questions are answered. For me, I kept track on a notebook the doses, so I'd know when I'd run out. But I was suprised how much extra they put in there. Then for my IVF cycle, the nurse let me know the pen will just stop clicking down when it runs out, and then I just pop another cartridge in.

And you will never run out of needles. EVER! And you can reuse a pen, but they keep sending me more I have so many pens and needles and sharps containers....it drives me crazy!

lebradford · May 2014

@pintobean39 or anyone else

The price listed online for Freedom Fertility for 300iu of Follistim is like $540, not in the $300 range. Is their online price different than the self-pay price they give you if you call??

I'll have to ask my nurse if they'd let me switch brands within a cycle. I assumed they wouldn't, but maybe I'm wrong.

And, pinto, I'd love to see your med price chart for the US. Thanks for the info on shipping cost/delivery time/signature on delivery. That makes a big difference.

MissEm15 · May 2014

NariaDreaming said:

So if your RE suggest you get 900 IU for a cycle, three 300 IU pens will result in somewhere between 225- 375 IU of free follistim

@nariadreaming ^^^ CLEVER!!

MissEm15 · May 2014

@lebradford I just wanted to comment on my response, because it was different than PP's. So I did my first round on clomid, I had one follicle and VERY thin lining. I was immediatly switched to Femera & Follistim. I did the 5 days of Femera and then 100iu Follistim for 6 days I think. My lining was a little better and I had two follies. The third time I did 125iu daily and way overstimmed and had to cancel. This past time I only took Follistim 100iu for 7 days and had way better lining and 3-4 follies. I don't have PCOS or anything tho and my tests have all been "normal".

I really think you will repsond way better!! Good luck!!

Pintobean39 · May 2014

lebradford said:
@pintobean39 or anyone else

The price listed online for Freedom Fertility for 300iu of Follistim is like $540, not in the $300 range. Is their online price different than the self-pay price they give you if you call??

I'll have to ask my nurse if they'd let me switch brands within a cycle. I assumed they wouldn't, but maybe I'm wrong.

And, pinto, I'd love to see your med price chart for the US. Thanks for the info on shipping cost/delivery time/signature on delivery. That makes a big difference.

Freedom is for Gonal and Alexandra is for Follistim. My RE will let me take either so I priced both, when you take 2500iu a cycle even $5 for each 300 iu adds up. I was told pharmacies have contracts with one brand or the other that's why the price can be a huge.

Also have you applied for compassionate care or first steps? You can get discounts on follistim. They say everyone gets a discount even if you don't qualify but I didn't qualify and the "discount" that I got was still more expensive than Alexandra's OOP price because you have to use certain pharmacies and those prices are even higher. I do think if you are eligible for a discount it may be worth it.

Also every time I call freedom they do everything to try to help me out on price. If you order over 2k you get $100 off and they do have some specials like if I order Gonal I get $50 off my lupron and I think I got a discount on Menopur too. My nurse works with me on ordering the meds that are the cheapest for me even if it's sending it to different pharmacies. The lady at freedom told me yesterday there is a rx card for Gonal that's on their website. It only helps pay copays if you have insurance because the price for Gonal with insurance sometime ends up being the same price as OOP but you can't get the rebate so they will try to help you with the copay.

It's all a big game and I've been researching this for a while to try to figure it out.

Pintobean39 · May 2014

		MDR	Freedom	Avella	Alexandra's Twin
Progesterone in Oil		39.87	35.9	49	29.9
Novarel/Pregnal	1	89.73	88.9	92	80
Ganirelix	3	128.97	144.9	123	110
Lupron	1	144.9	99	155	109
Gonal F	8	269.87	256	275	259.9
Menopur	30	74.98	71.9	79.75	72

Pintobean39 · May 2014

I think it worked. I'm not 100% positive on the pregnal/novarel because my RE has always let me get the cheapest of the 2 which is Novarel but for my IVF they wanted Pregnal exclusively and it was more expensive, I forgot to ask my nurse why. I didn't realize this until I ordered and I'm not sure if this spreadsheet is for all of novarel or some novarel and some pregnal. Also the #'s on the side ignore thats how many I needed to start off my IVF. I even put in formulas in this spreadsheet so I new exactly how much I would be paying. I may redo it next week and make it pretty, I hate ugly charts and this one was just thrown together.

ETA: I also think the menopur price for freedom was with some discount program, if I remember correctly.

lebradford · May 2014

Thanks, @pintobean39! I haven't applied for any discount programs yet, but I need to get on it now!

Pintobean39 · May 2014

lebradford said:

Thanks, @pintobean39! I haven't applied for any discount programs yet, but I need to get on it now!

Yes go ahead and apply, they let you know within a day or 2. You can get discounts on follistim and a few other things like trigger shot. That way you can let your nurse know because it has to go to specific pharmacies to get the discount.

Moving onto injects/millions of questions

Re: Moving onto injects/millions of questions

Me 33, DH 37 -- TTC since Jan'12 -- Low AMH (0.78) & endo, SA w/ low motility
IUI's 1-3 = BFN, IVF converted to IUI 4/13 = BFN
IVF 1.2: 8R 6M 4F -- 2 blastocysts frozen, FET 8/15 = BFP!!
Beta #s = 445;1,098; 9,545 -- EDD 5/2 -- Team Pink!

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Moving onto injects/millions of questions

Re: Moving onto injects/millions of questions

Me 33, DH 37 -- TTC since Jan'12 -- Low AMH (0.78) & endo, SA w/ low motilityIUI's 1-3 = BFN, IVF converted to IUI 4/13 = BFNIVF 1.2: 8R 6M 4F -- 2 blastocysts frozen, FET 8/15 = BFP!!Beta #s = 445;1,098; 9,545 -- EDD 5/2 -- Team Pink!

Choose Another Board

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Me 33, DH 37 -- TTC since Jan'12 -- Low AMH (0.78) & endo, SA w/ low motility
IUI's 1-3 = BFN, IVF converted to IUI 4/13 = BFN
IVF 1.2: 8R 6M 4F -- 2 blastocysts frozen, FET 8/15 = BFP!!
Beta #s = 445;1,098; 9,545 -- EDD 5/2 -- Team Pink!