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Question about follistim side effects/I'm new to this site

Hello Everyone,

I'm wondering if anyone is experiencing side effects from Follistim?  

The nurse practitioner at the fertility clinic said she never heard of anyone becoming ill from follistim, and the fertility doctor gave me a vague answer when I told him how I was feeling.  

I had an HSG (Hysterosalpingogram), then a laparoscopy, was on clomid, and then had three IUI procedures while taking follistim, ovidrel, and progesterone.

I was taking up to 150 IU of Follistim per day and had all the following side effects:  nausea, loss of appetite (yet a great deal of weight gain), breast pain, back pain and headaches.  

Next we are trying IVF, and they are going to put me on 400 (!!) IU of follistim!!  I can't imagine how sick I'm going to be and I'm frightened thinking about it.  

The patient information leaflet does list some possible side effects from taking Follistim but I would feel better hearing about others' experiences.  

Thank you everyone for your input.  

Sincerely,
Julie


24 Responses
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Avatar universal
Hello...so glad to find a site where there are others out there either going through or having been through what I am experiencing myself.  I am taking 450IU each night + 75IU of Menopur...this is my 4th day and I woke up this morning with a huge bloody eyeball.  Thankfully for me, this is a common occurrence for me because I am a longtime migraine sufferer, so it didn't have me running for the emergency room.  However, I was not prepared for the side effects to be quite this harsh on the Follistim.  And reading all the previous posts, and seeing how much more my daily does is than most everyone else's I am getting a little nervous about my next 7 days of taking it.  I do have the horrible bloating (can't even button my pants up)...but I just keep telling myself it is practice for what is hopefully ahead...bring on the baby bump Follistim!!!  One question, how long after getting off the Follistim do the side effects go away?
Helpful - 0
Avatar universal
This is my first time taking follistim.  I am on 75 IU's each night and just took my 4th injection tonight.  Today I began feeling crampy and extremely bloated, as well as a bit nauseous.  I am probably freaking myself out by reading about the many side effects online, but I am a bit concerned about OHSS.  I had previously been on clomid for 4 months prior to the follistim and hated the way it made me feel.  I was hoping for less side effects with the follistim, but after 4 injections, I am beginning to feel less hopeful.  Also, I have a small cyst on my right ovary and my doctor has reassured me that it has not changed at all and it has not grown, but I am worried that the follistim will cause it to grow and enlarge.  Any feedback would be greatly appreciated.  My heart goes out to everyone who is going through this, as it is not easy.  Best wishes and fingers crossed for you all!!
Helpful - 0
Avatar universal
Hi Ladies,

I am 38yrs old - ttc for 2 years - found out I have endometrosis - have had 6 failed IUI and now we are starting our IVF process. The RE started me off on BCP for 7 days and now I am on my 4th day of Follistim 300 IUI. I have had slight headaches, tired and now some cramping. But I have also had some spot bleeding. The nurse told me this was normal because of coming off of the BCP last week. Does this sound normal? Anyone else experience this??

Good luck to all of you!! XX fingers!
Helpful - 0
Avatar universal
Wow! Thanks to all of you for posting. I am 43 and just had my third injection of 300 folistem. I am also taking 5 of letrozole. I am tired. I feel uncomfortable and am a bit grumpy.  I am worried about weight gain due to already having gained weight due to a three year battle with diagnosing  a benign tumor in my knee that transformed me from an athlete to "plump", but so far so good. I definitely have lost my appetite as well. This is our first and only iui attempt. best of luck to all and pls keep posting. It was such a relief to find this blog. I have moments when I think I am crazy to try to get pregnant for the first time at this age. My family is not very supportive. Reading your posts has been so helpful. Thank you!
Helpful - 0
Avatar universal
I have been on Follistim for approx. 6months, three months for IUI and now we are moving into IVF hopefully.  I have had terrible migraine headaches ever since starting the medication.  Now I have been a long sufferer of migraine headaches in the past, but these headaches are a bit different.  Even though I take the medicine, sometimes they don't go away.  I talked to my P.A. and she says that because I am prone to getting migraine headaches already that when I take the Follistim it will only make them worse.  They have been days and weeks where I try to deal with the headaches as best I can.  IRight now I am on a 375 IU of Follistim and I am only on day 3 of taking it.  This is my second attempt at trying to get to IVF.  Last month I took Lupron (10IU), Follistim (250-275IU) and the BCP, but my ovaries only produced 3 follicles.  Not enough to do the retrieval.  So here we are trying again this month.  
I really hope that this help you out a little bit.  Good luck in your quest for a family.
Helpful - 0
Avatar universal
I am on my 6th day of follistim (first two days was 50 IU's and have been 75 IU's ever since because of only having one ovary and tube).  From day 1 I have had headaches everyday and have gained 4-6lbs, not to mention NO ENERGY AT ALL!!! But the RE said that the follistim has no effect on energy levels! HELP!! :) Good luck to al!
Helpful - 0
Avatar universal
Hi everyone I have been on 300 of follistem for 5 days. I have had headaches, no energy, nausea and loss of appitite probably cauz my belly is upset.  I hate it and cant wait for all of this to be over :(
Helpful - 0
Avatar universal
After I injected the 2nd Follistim last night (150IU per day), I've started to have constant headaches. I feel like my head is swelling like a balloon. I called a nurse. She told me that my headache had nothing to do with Follistim. She suggested that I take Tylenol.

Besides headaches, my breathing feels a little different with somewhat congested nostrils.

Now before I inject the medication the 3rd time, I feel a little nervous. Don't know if this will cause more headaches, or cause me any health issue. I hope the pain that I endure will be worth it!
Helpful - 0
Avatar universal
HORRIBLE WEIGHT GAIN and little energy !!! But jogging will kill those extra pounds so don't worry.
Helpful - 0
1292404 tn?1272229908
I am 43 years old and a yoga instructor - in extraordinary health. One prior pregnancy 8 yrs ago.  Tonight will be my 3rd injection of Follistim @ 150mg. The only perceived side effect is slight & sudden mood swings similar to that of PMS. Other than that, no physical side effects.
Helpful - 0
1054108 tn?1314298660
How come all of us had different doses of follistim? With my first and second in vitro (unsuccessful) I injected 300 IU and 150 IU MENOPUR, this time I'm injecting 150 IU plus 150 IU MENOPUR PLUS 20 IU LUPRON. What do you thing about that?
Helpful - 0
Avatar universal
Oh Julie, I'm right here with you!  I had my first follistim injection last night (400IU) and I have the worst headache!  i experienced a little bit of nausea, but this migraine is awful!!!!  So for those that actually had the headaches, what did you do???  I mean, I can't really function like this!!!

Thanks,
rachael
Helpful - 0
Avatar universal
I completed my second shot of follistim. I had a weird swelling under my breast on my rib. Has anyone experienced weird swelling?

Thanks
Jamie
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Avatar universal
I have been on the medication for 4 days (the first two days at 150 iu and the second two at 75 iu). I think I have a yeast infection. The first time I had one was right after a miscarriage but never had one again. I'm glad to hear that I can still continue the treatment and hopefully conceive while having a yeast infection. I'm going to an appointment today so I'm going to mention it to the doctor. In addition to the yeast infection, I'm also feeling very emotional. Could it be the hormones?
Helpful - 0
Avatar universal
I was on Follistim this month for 10 days 150 units at night. I was very sick for 4-5 days. I had nausea, loss of appetite, breast pain, back pain and headaches and significant abdominal swelling, no energy. Still have breast pain...
Had 5 mature eggs......will know in next 3 days if we got pregnant....if not IVF is next.  
Helpful - 0
Avatar universal
I have been on follistim three times, 150 dose a day and once 75.  I have had a yeast infection 2 of the 3 times, and I never have them any other time.  I got pregnant with my son on follistim a few years back, and am back on it this month and true to form I have gotten another years infection.  I have had all the side effects you listed except weight gain.  I dont think this can be a coincidence.  

Lu
Helpful - 0
Avatar universal
I have taken 2 shots of Follistim (225 units at night) and havent really experienced any side effects. Maybe just a little tired. I dont think ive noticed a weight gain but maybe it can happen after a few more shots.
Helpful - 0
Avatar universal
Yes, it is a pain. I called my doctor, and he's ordered me something for the yeast infection that appears to be developing into a urinary tract infection as well.  
Here's the good news though: he assured me that all this will have no effect on my chances of getting pregnant since they completely bypass the vagina when doing insemination.
I was almost afraid to call and tell them I was ill because I'm more than halfway through my Follistim shots, and in the past two months we've been stopped once by a cyst and the second time by breakthrough bleeding which kept me from having a natural menstrual cycle.  I'm on day 6 of this go-round.  I sure hope I don't get that headache you did.  
Thanks for posting a reply. Something about this process makes me feel isolated. But, then, maybe that's just a side effect of Follistim, too. (Ha)
Helpful - 0
529933 tn?1228260919
I am on day 6 of 8 Follistim shots (I take 150 units a night), and no weight gain, constant mile headache and yes, it does sting at injection site for a bit!
Helpful - 0
374593 tn?1257879950
You know i never get those either, but got one last month.. not sure if it was from that or not, but ugh what a pain!    i also get KILLER headache starting around day 7 or 8 that lasts for 4 days or so , i can't even sleep at night with it. its bad, but worth it if it works! : ) GOOD LUCK!
Helpful - 0
Avatar universal
Hi,
I'm on Follistim for 5 nights, 100 units injected every evening.  So far I've had mild abdominal pain, significant abdominal swelling and weight gain, and a very painful yeast infection.  I called the nurse at the fertility clinic, but she had never heard of anyone getting a yeast infection as a side effect.  I haven't had one in years, so it's hard for me to believe there is no connection.  Has anyone ever experienced this?  
I've also felt weepy and nervous, but the yeast infection could be contributing to that.
Lisa
Helpful - 0
385161 tn?1270081218
Yes i have the same symptoms except no weight gain yet, tonight was my first dose. Anyone else? the nurses said the same thing to me, they didn't expect any side effects.
Helpful - 0
Avatar universal
Hi,
Thank you so much for responding.  

So far I haven't met or heard of anyone being affected by follistim.  Of course I don't want anyone else to be sick, but if someone out there is having difficulty on follistim then it would help me to know I'm not alone.  

Thank you for the well wishes.  

Please write if you feel like sharing your story.  

Julie
Helpful - 0
117065 tn?1280874407
Fortunately, when I was on follistim I had no side effects of it at all.  The only thing I didn't like about it was the meds really sting right after injection.  I just wanted to wish you luck- l hope you're finding the answers you are looking for, there are a lot of great women on this forum who are a wonderful source of support.  Good luck!
Helpful - 0
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