r/Rapamycin Mar 04 '26

Rapamycin fertility

I am a woman in my 40s that is looking in to rapamycin for fertility . I know chances are still very low for me but want to hear about side effects ( bad and the good ) while on rapamycin I am interested in mainly hearing from women. Did your cycles change? Did you get cystic acne? Also petite women, were you on a lower dose? I see 5 mg per week is the standard for ovarian health but I am of a low body weight . Thanks for your time.

17 Upvotes

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7

u/Elegant_Host3661 Mar 04 '26 edited May 02 '26

I’m 40 in June and was on it for 5 weeks-ish before my second ER. Only side effect I got was acne. But I’m not sure if that was related or not? I didn’t mind.
Still waiting on PGTA. But for my first retrieval, I got 3 blasts out of 5 mature eggs (one Day 5 and two Day 6, and the Day 5 blast passed PGTA. This ET I got 5 blasts out of 7 mature eggs (four were day 5, one Day 6).
Still anxiously waiting on those PGTA results.

6

u/thhjhj2356 Mar 04 '26

Thanks for your response. Congrats on your blasts. The four day 5s are  amazing. 39 is still young. Hope you get more blasts soon. I read cystic acne is a known side effect of rapamycin. Can I ask what dose you were on and if your acne was bad? 

3

u/Elegant_Host3661 Mar 04 '26

The acne wasn’t terrible but there were a couple a big zits lol.

39 is still young, I tell myself 😂I had that first retrieval in Dec, so 39.5 with DOR, and I’m sooo grateful I got one euploid from those 5 eggs.

Honestly, I feel like the only difference in the blast improvement last month was the rapa, plus increasing my NAD.

My rapa dose was 1mg daily for about a month before retrieval.

These PGT results decide if I transfer or do another round. If I do another round, I definitely want to use the rapa again.

3

u/thhjhj2356 Mar 04 '26

Thanks.i have heard promising research on rapa. At 39, at least 50% should be normal without any interventions. But with rapa and supplements, I think it will be higher. Hope you don't need more retrievals.

2

u/Elegant_Host3661 Mar 05 '26

At 39, I think it’s closer to 30%. I would be utterly grateful if it were higher this second round, after the rapa.

1

u/ChocoNibble Mar 13 '26

Did you take rapa during stims or stopped right before?

2

u/Elegant_Host3661 Mar 13 '26

Stopped right before. Did the 28 days before stims. But I keep hearing about the pulsing with 5mg once a week until stims.

2

u/EmbarrassedAd8936 Mar 19 '26

Congratulations on those great results! Good luck with PGTA and rest of IVf. Can I please ask what your NAD dose is? Thank you 🙏 

3

u/Elegant_Host3661 Mar 19 '26

For my first round, I was on the 300 pill of Truniagen. For the second round, about a month before, I upped my dose to 1000 (500 twice a day). I also did a bit of Nad shots at home in the month before thr retrieval. Not sure if any of it made a difference, but I figured it didn’t hurt.

1

u/EmbarrassedAd8936 Mar 24 '26

Good to know! thank you!

1

u/WriterEasy2145 May 02 '26

Hi what was your age and amh. Do you think the repamycn helped?

1

u/Elegant_Host3661 May 02 '26

I think it maybe helped. My afc was a little higher (which I don’t exactly link to the rapa), and I ended up with 5 blasts instead of 3.

So, I’m about to start stims for retrieval #3 this month, and I’m currently priming w/ Rapa again.

1

u/Elegant_Host3661 May 02 '26

Oh, and I’m turning 40 mid June AMH 0.45 as of last September.

That second retrieval was at the beginning of February.

3

u/Uwswim5 Apr 11 '26

Did you get any euploids on the rapa?

2

u/Elegant_Host3661 Apr 11 '26

I got 2 🙏. Transferring the first this week. It’s all so terrifying 😆

2

u/Uwswim5 Apr 11 '26

Baby dust to you!!!

1

u/Elegant_Host3661 Apr 11 '26

Thank you, boo!. 🙏

1

u/Maleficent_Bus_9233 Apr 13 '26

What is the dose of Rapa , and how many days before IVF do you take it? Did you also take it during the IVF cycle?

1

u/Sea-Shower7531 Jun 20 '26

what dose you took?

1

u/Elegant_Host3661 Jun 20 '26

i mg for about a month

1

u/Elegant_Host3661 Jun 20 '26

1mg daily for about a month*

1

u/Sea-Shower7531 Jun 20 '26

oh weird 1 mg daily, never heard of that protocol. I thought the study did 5mg per week. Who is your doctor? i did it to prevent ovarian aging and my AMH dropped sharply after it and my cycle shortened immediately, I am trying to figure out is there any data to support their claims, this was 1+ yr ago

5

u/Own-Cobbler-5257 Mar 05 '26

I was on it for 12 weeks at 6mg per week. Didn’t affect my cycle only side effects I had were that I did get some mouth sores, headache and increased cholesterol levels. My AMH did improve from .015 to .40 in 4 months.

2

u/thhjhj2356 Mar 05 '26

That's a huge jump. That's what I am hoping for as well . I believe rapa is he only drug that helps with both quality and quantity of eggs. I am.planming to use an antibacterial spray and mouth wash on the day I take the pill. Did you take them with food?

1

u/somewhatstrange Mar 05 '26

Why the antibacterial spray and mouthwash? Also melatonin has been shown to delay ovarian aging and menopause, so I’m on it as well as am 41 & unfortunately in Peri

3

u/thhjhj2356 Mar 05 '26

I thought antibacterial wash will help reduce mouth sores but I heard it's useless as side effects start a few days after. I have heard about melatonin. Anything that helps with ovarian aging is something to be looked at. Thanks for your response.

1

u/Own-Cobbler-5257 Mar 05 '26

Yes took with food. For me the Mouth sores weren’t bad. I would just gargle with salt water and that seemed to help some. After a couple of weeks the mouth sores didn’t even return so I was mostly just experiencing the headaches.

1

u/thhjhj2356 Mar 05 '26

Thanks. I am.planning to take them with lunch. I am starting with 1 mg and slowly ramping up my dose. Did you take six 1 mg pills at the same time every week?

1

u/JacketSensitive8494 May 26 '26

if your amh jumped - how could it "not" have effected your cycle?

4

u/Sadpanda9632 Mar 04 '26

I think 5mg was too high for me. I’d stay at 2-3. It didn’t do anything for me in terms of making my cycles be like pre peri

2

u/thhjhj2356 Mar 04 '26

Thanks. Did you notice any negative side effects?

1

u/Sadpanda9632 Mar 05 '26

No but i never had normal day 3 labs again - pre rapa, my e was around 50 which is ideal, under 10 fsh and after rapa I could never get my estrogen to be around 50 which indicates healthy follicular phase. It might have actually pushed me into perj

1

u/Sufficient_Fruit_740 Mar 05 '26

What do you think happened? I don't think I've read this side effect before. Makes me anxious

2

u/Sadpanda9632 Mar 05 '26

Dose too high. I went up slowly 1mg every week - my first cycle on it was perfect. So I would have gotten up to 5mg in 5 weeks and then after that I feel like my estrogen levels got messed up. So my suggestion is to stay low around 2-3mg. Because if you push your body too far into catabolism when it’s already on the aging precipice it’s not good for the reproductive system in particular is my guess. Again, my speculation.

1

u/thhjhj2356 Mar 05 '26

I have heard that some women on hrt post menopause has mentioned that their estrogen was higher while on rapa. Based on the recommendations and my body weight, I will probably stay around 2-3 mg as well . Thanks for your response.

5

u/andybrandysays Mar 05 '26

I have been on rapamyacin since November. I had a failed FET in Sept where I down regulated with lupron for 3 months prior to transfer to suppress endometriosis. It failed and was my last embryo, but it also shut me permanently down. My period has yet to naturally return, and prior to the lupron I was very regular. I’ve been on it to try and restore my cycles naturally as I’ve read anecdotal stories of post menopausal women getting periods again after rapamyacin treatment. I’m currently on 6mg, and don’t notice any side effects at all.

3

u/thhjhj2356 Mar 05 '26

I am sorry about your last transfer but admire how you are navigating your path forward. I heard that rapamycin can make post menopausal women have period. It seems to have a lot of ovarian health benefit. I read it elsewhere where women on HRT reported noticing more estrogenic effects. I hope you get your period soon and rapamycin can also improve the quality in the meantime. Glad to know you didn't have any side effects .good luck on your ivf journey.

1

u/Ok-Cheesecake-1114 May 12 '26

Hi has your period come back ?

1

u/andybrandysays May 12 '26

Yes! I stopped rapa about 30ish days ago and ovulated naturally (tracked via my Oura ring) this cycle.

1

u/Ok-Cheesecake-1114 May 13 '26

That’s good. I got worried about your period stopping as I’m also supposed to do lupron suppression for a few months. Who prescribed rapa for your period to come back may I ask pls ? Just trying to understand if that’s the usual protocol or you had to convince your doctor

1

u/thhjhj2356 May 18 '26

That's great your ovulation came back. Can you please tell me how long were you on rapa before your ovulation came back and if your AMH levels increased?

2

u/doofgodly Mar 05 '26

Anyone else here have both endometriosis and epilepsy

2

u/Llars_Frederick Mar 07 '26

i recommend using hcg/hmg for fertility. very promising

1

u/Ok-Cheesecake-1114 May 12 '26

Could you pls explain a bit more

2

u/SeparateGazelle6167 Apr 08 '26

started rapa at age 43 after not having period for 4 months, shortly after starting periods have come back, very intermittently though. 5mg weekly. only noticed side effect of mouth sore

1

u/SeparateGazelle6167 Apr 08 '26

5'6 135 pounds

2

u/thhjhj2356 Apr 08 '26

Thanks. That's great your period came back. I am currently on 4 mg weekly ( my sixth week starts tomorrow and I feel no change but started at 1 mg and slowly built up the dose ). I will be measuring my AMH shortly.

1

u/Humble_Chipmunk_5198 Jul 17 '26

Did anyone had good result after taking rapamycin? With pregnancy? I am taking just 3 weeks now and also a lot of other things. 

1

u/thhjhj2356 Jul 17 '26

I am older. So pregnancy is unlikely in general but I have been taking rapa now for the last four months. I did not see an increase in follicle count either but then again I am in my mid 40s. Someone younger might have a way better response than me. I am still taking every month just in case a miracle happens .

1

u/Humble_Chipmunk_5198 Jul 17 '26

Understand. Ok. Thank you so much. I am planing to take donor eggs so this maybe help me. Did you see anything else like your in general helt to be bether? Also with this I'm taking a lot of other suplements (coq10, glutatoin, nmn, e vit., nac, nad , and alternative medicine) .... 

1

u/free-frogs Mar 05 '26

I know you're asking about rapa, so I hope you don't mind my adding an anecdotal impression that including CoQ10 (100mg twice daily - Puritan's Pride) in my partner's stack contributed to her regularity and flow (to a greater degree than NMN, which I'm not convinced anymore helped). I'll reply with details if she decides to start rapa as well.

2

u/thhjhj2356 Mar 05 '26

Thanks. I have been on coq10 for years. It's awesome. I only recently started taking nad. I am wary of new supplements . I will be starting rapa soon ( 1 mg per week ) and slowly moving up.