The devil’s spawn, Lupron, and its evil cousin, Decapeptyl, as used in IVF

One of the wonderful things about having a blog is you get to look and see what search terms bring people to your site.  After writing my post on Exercise, Weight, and IVF, it felt like a total score every time I saw that someone searching for “weight gain during IVF” had found my site – yes, folks, come on in, I am writing for you.

I also realized in looking at the stats that a lot of people come to this site looking for information on Lupron or Decapeptyl (aka Triptorelin), something I have written about obliquely (e.g. in the aforementioned post) but never directly.  So here, my dear Googlers, is everything I know about Lupron and Decapetyl, based on 7 cycles with Lupron and 1 with Decapeptyl.

I should start off by saying that the title to this post is a bit misleading.   It is a bit rude to tie Lupron and Decapeptyl to the Root of all Evil when in fact they are such necessary medications to make IVF work.  My negative designation has nothing to do with the effectiveness of these medications – they work great, at least for me, doing their job of shutting down the ovaries with brutal efficiency – but rather is related to their side effects.

Yet even there, I do not want to give too negative a picture and scare the poop out of my poor Googler.   Reactions to these drugs vary from person to person and from cycle to cycle.  Indeed, I had one cycle where I had no side effects from Lupron whatsoever – I just went about my ordinary business and ignored the fact that I was cycling completely.  This was, however, not my usual experience, and it is my usual experience I relate here.

Note: in this post I am referring specifically to the use of Lupron and Decapeptyl for IVF, as opposed to for endometriosis, prostrate cancer, and whatever else they are used for.

1. What are Lupron and Decapeptyl for?

These two medications have different formulations but they both do the same thing –  they put your ovaries to sleep so that the RE will have free rein over them with the other medications he or she gives you, and your ovaries won’t act up by trying to do their regular thing (e.g., by ovulating at an inconvenient time).  In doing so, they generally cause your estrogen levels to plummet, which puts you in an artificial state of menopause.  This can lead to menopause-like symptoms (e.g., hot flashes).   These symptoms may or may not be relieved later on in your cycle when your estrogen (and other) hormone levels increase.

2. How do I use Lupron?

Lupron dosages vary (also sometimes within a cycle), so you’ll have to check with your doctor about that.  In every cycle I have done with Lupron, I had to inject myself in the evening (say, between 7 and 9 pm).   Pick the time you usually inject carefully, since you have to inject it at pretty much the same time every night – my nurse told me you should not inject it more than one hour away from the time you injected the day before.   After you have been doing it for a while, you will start to get good at injecting discreetly in restaurants, at people’s houses, or in airplane toilets, thereby allowing you to live a more or less normal life despite the daily injections.

Lupron is usually stored at the pharmacy refrigerated.   The pharmacy and perhaps also your RE will tell you it can be left unrefrigerated for up to 30 days.  When I went to Cornell, they said you should refrigerate it anyway, you never know.  And Cornell has great rates because they are careful about everything.  So I would be inclined to follow their advice and refrigerate it, even though it doesn’t say you need to on the package.  You should warm up the Lupron to skin temperature before injecting to reduce stinging, e.g. by holding the prepared syringe in your armpit.  There is lots of great info about how to do Lupron injections at the IVF Shoot ‘Em Up.

Lupron officially expires 30 days after opening.

Personally, I asked my husband to do the injections.  When he was away, I did them myself.  At first, it was very difficult for me to inject myself; it took me about 30 minutes to get the needle in the first time.  After a while, I got used to it, but I still preferred for Mr. Nishkanu to do it if he was around.  Fortunately he got some fun out of it.  Twisted, I know.

3. How do I use Decapeptyl?

When I used Decapeptyl, it came in individually wrapped, pre-filled syringes, which made it pretty easy to use.  Not only that but the syringes were glass and beautiful.  None of these cheap-o plastic insulin needles here!  I do not know if this is the standard formula.

In any case, Decapeptyl definitely needs to be kept refrigerated, in fact the pharmacy even gave us a cooler and ice pack to carry it home in.   You should warm the Decapeptyl to skin temperature just before the injection because it stings like crazy if you don’t do that.  Not to be unclassy, but I found it worked well to heat it up by sticking the still-wrapped syringe in my bra for 5 minutes before the injection.  Note: the Decapeptyl, unfortunately, stings pretty badly even when it is warm.  Not the most pleasant shot ever, but the pain goes away quickly.  There are no Decapeptyl videos on the IVF Shoot ‘Em Up, but you can get an idea of what to do by watching the Lupron video and just skipping the part where the person fills the syringe out of a vial.  You do need to knock out the air bubbles before you do the shot.

Your clinic will tell you your dosage and when to inject.

4. How will I feel on Lupron?

As mentioned above, I can’t say how you will feel, because symptoms vary widely from person to person and cycle to cycle.  I am happy to report how I felt, though.  Generally speaking, I would feel pretty good for the first day or two after starting Lupron.  Then I would start to get overconfident and say “Ha, it won’t get me this time!  I feel great!”  Around about then I would start noticing problems with my concentration.  As the Lupron wore on, I would get stupider and stupider.  I would lose my short-term memory and end sentences in the middle.  I might or might not get hot flashes, and I might or might not get headaches.  But I would definitely, definitely, get very, very, very irritable.  Emotional roller coaster, here we come!!  Mr. Nishkanu knew to stay out of the way.

Note: for one cycle, I had no side effects from the Lupron at all.  That cycle I got irritable afterwards instead.

5. How will I feel on Decapeptyl?

I don’t know about you, but in the country where I used Decapeptyl the package leaflet was written only for the target audience of prostate cancer patients.  None of the discussion of dosages, side effects, etc., made any sense for IVF patients.   This makes it challenging for you to figure out what it might do to you. If you speak German, you may find this description more useful.  Unfortunately, it includes the information that 75-100% of patients complain of headache.  I was in that 100%.

Again, my experiences won’t necessarily predict yours, and I only used Decapeptyl for one cycle so my experience is pretty limited.  In case it is relevant, here is how I felt: like I got hit by a truck.  For me, Decapeptyl was similar in side effects to Lupron, but worse.  While I am normally an obnoxiously cheerful morning person who leaps out of bed with a spring in my step, on Decapeptyl I had a very difficult time in the mornings even getting myself to get up and move around a bit.  I had a more or less permanent headache, and my energy level and concentration became quite poor.  I didn’t get hot flashes very often on Lupron, but I had them all the time on Decapeptyl, the kind that make you just want to rip off all your clothes even though you are in public (fortunately, I generally managed to resist that temptation).   Irritability factor was pretty high, and a certain intimate area of my body began to resemble a desert much more than its usual marsh.  It was not totally debilitating, but it was not really what I would call pleasant either.

6. Oh my god, I don’t want to feel that terrible.  What can I do to avoid these bad side effects?

In my experience, there is a magic secret to feeling better on Lupron or Decapeptyl.   No matter how terrible I felt, if I dragged myself to the gym and got an intense workout, I felt 100% better, and the effect would last for hours.  Really.  It was like a miracle. You can read about it here.  Before you take my advice, though, ask your RE about whether s/he thinks it is OK to exercise before your cycle.  And you should never exercise while you are on stims, as it can lead to ovarian torsion (i.e., your ovaries getting into a twist, which hurts just as much or even more than you might imagine).

7. Gee, I think I gained some weight on Lupron/Decapeptyl.  Is that just my imagination?

Probably not.   See here for a full explanation of the Lupron/Decapeptyl weight gain phenomenon.

8. What Lupron/Decapeptyl fun fact can you tell me that will make me sound witty and smart at cocktail gatherings of infertiles?

Are you ready?  This is a good one.

Lupron and Decapeptyl are doping drugs, according to the International Olympic Committee.  That’s right, ladies and gentlemen (although in this case, actually, just the ladies, this won’t work for the gentlemen unless they are already on steroids), if you exercise your butt off while on these drugs you will build up lots and lots of muscle.  Just don’t exercise while stimming (as mentioned above, this can lead to a very ouchy and perhaps no longer functioning ovary).

Good luck!

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17 Comments »

  1. Whoa, had no idea that it was a doping drug. Good thing I was banned from exercise for this cycle.

    I have to be a bit of a contrarian on the Lupron: my nurse said nothing about taking it at the same time every night. Most of the time I did, but there were quite a few where I didn’t. Never seemed to affect anything. Also, I never felt much on it. No headaches, no ditzy-brain, none of the hell that I’d read about elsewhere. I consider myself very lucky on that one. But perhaps I’m just the oddball. Wouldn’t be the first time… 😛

    Nishkanu, thank you SO much for your comment this weekend. Really helped a lot. Hope you are feeling good… when is your first u/s?

  2. Katie said

    Thanks again for another fabulous post. I’m on day 10 of Lupron and this is the 5th cycle that I have used this drug. I also have a love/hate relationship with Lupron. I love that it does exactly what it is supposed to and I F*$%ing hate the side effects (weight gain, migraine headaches, dizziness, general stupidity, mood swings, etc.). I seem to experience most of the side effects, but I also reap the benefits of this wonder drug. Just this morning, I lost my temper with my husband because he had borrowed my heart rate monitor and changed adjustment of the strap. No big deal, right? Apparently, it was a very big deal to me this morning. I spent most of our boot camp class pissed off at him for something that wouldn’t normally bother me at all. I do know when I freaking out that I am being a bitch over nothing and that I am out of control, I can’t stop myself. Actually, I don’t seem to care enough to try to stop. Thank goodness I have an incredible husband who loves me more than I deserve at times like those. He just steps back and lets me rage.

    On a positive note, I was at my RE’s office this morning and things are looking great this cycle! I don’t have any cysts, which is just short of a miracle for me, and I have more follicles than normal for me. I just need to get my estradiol level results back and then we’re on to stims tomorrow. I pray that this time works, but we do have our plan B figured out. If this cycle does not knock me up, then we will take 2 months off (to detox and lose some weight) and begin another cycle with donor eggs.

    Thanks again for your blog. It is a true pleasure to read and it is so nice to know that there is someone out there who really understands what I am going through. I often find myself searching for words to describe what I am feeling in a way that my husband can understand. You have a wonderful way of spelling it out with facts mixed with humor. I have asked him to visit your blog every few days. Thank you so very much!

    Katie.

  3. Phoebe said

    First Lupron made me tired, then loopy, then angry. I got very angry on Lupron. I hated it. Interesting factoids.

  4. Mischa said

    Extremely informative post; appreciate the perspective…… Starting Lupron for first time on 1-29…. thanks- Grateful Googler….

    • nishkanu said

      Good luck with it! Hope you have success!

  5. randy said

    Hey! your blog is the bomb. I am doing DE and my transfer is next week most likely…it is SO great to read how similar your experiences with all this crap are to mine…I have a blog at frankenkid.blogspot.com
    Oh!! I also thought I was the ONLY person who discovered Lupron was banned on doping lists…guess what else…so is ESTRACE!! Although low on the list it’s there. I have since halved my lupron and am on 4mg of estrace…I SWEAR my performance is improved in running distance and in speed work!!! Soon to up it to 3 pills of estrace…who knows…maybe I’ll win the olympics or something…
    keep writing!

  6. Marylin said

    Hey!
    Thank you SOOO much for the information about Lupron/Decapeptyl. It is my first time on it, so I did not know what to expect… Yeah, like you said, first 2-3 days I felt fine and thought “maybe I won’t have any side-effects? That would be neat”… boy, was I wrong! By day 6 I had a migraine-sized headache 24/7 and painkillers did not do much. I literally held my head between my hands and cried, beacuse the pain was intolerable and there was nothing to do… I maxed out the daily limit of painkillers, but they did nothing (btw, doctor said later that painkillers do not really help with such kind of hormonal pain, although you can use Paracetamol and Ibuprofen).

    Then I remembered your advice to eat properly and EXERCISE. And it works!! I feel almost 100% fine – the pain never goes all away, but I can definitely live with that now, I don’t even have to use painkiller to go to sleep. A proper meal and healthy food (fresh vegetables and fish eg) plus good 40-minute workout a day has gotten me to day 10 on Decapeptyl by now and everything seems fine.. Thank you again!

  7. SR said

    Thanks Nishkanu for educating so many of us going through the cycle. My RE has never objected o excersing and never mentioned anything about ovarian torsion. I have the same sluggish feeling using decapeptyle. Though I had no idea about the weight gain coz of but definitely felt heavier and related it to heavy ovaries. Excersing makes me feel better and my RE keeps insisting on losing weight ( I am not sure if it helps to concieve).

    As you have mentioned there is no information linking excecise and ivf cycles. But your blog has been an eye opener. Thanks once again..

  8. M Turnbull said

    It was interesting to read all of this info. I am on Decapeptyl injections for six months, to treat fibroids by shrinking them. I am on month four and considering stopping treatment, the hot flushes are like you say feel like throwing off clothes they occur for me frequently at evening. Night sweats are worse waking up as if you’ve been standing under the shower….awful. One of the less common side effects stated is sore joints, A year ago I had a shoulder impingement which fully recovered after much physio but roughly about six weeks of being on decapeptyl my shoulder flared up, achy and tired it is slowly getting worse feel as if I’ve been kicked by horse does anyone know if there is a connection here.

  9. Lucy said

    thank you so much for this post. I am on day 5 of decapeptyl and this is my first (and hopefully last!!!) IVF cycle.

    Decapeptyl is truly horrible to self-inject and although the syringe is very easy to use, the stinging sensation is so bad when I take the drug that halfway through I want to stop… and I sometimes cry!

    No hot flushes or headaches yet… in fact I get more cold than anything else… and my energy levels are so low I nearly had to call in sick today as I couldn’t get out of bed!

    You blog has given me relief to know that this is normal as I was starting to panic that I was doing it wrong!

    Great blog… will check out more of your posts!

    THANK YOU!

  10. David said

    Thank you for your insight. My wife and I just started the Lupron phase of IVF and I have read some pretty scary things on what to expect in terms of side effects. Your article definitely put my mind at ease and will help me “support” my wife should any of these side effects rear their ugly heads. 🙂

  11. No woman should ever take Lupron for any reason. Find an RE who will do IVF without Lupron. It’s the stims that make you produce eggs. Lupron actually shuts your ovaries down – and is merely used for the scheduling convenience of the doctor. Lupron is NOT FDA approved for IVF, in part because it has been linked to birth defects. Lupron temporarily raises your estrogen level before lowering it, causing cancer for some. The FDA has not tracked the cancer rate of IVF patients and egg donors, so any RE who tells you Lupron doesn’t cause cancer is spinning that, but so many women have come forward to say they got breast cancer in their 30’s after IVF or egg donation. RE’s love to lie about Lupron and may be paid to prescribe it. Check the Physician’s Desk Reference instead!

  12. Beth said

    So here I am WIDE AWAKE trying to figure out why I’ve gained 7 pounds in 10 days while running 4 miles a day and eating well. THANK YOU! Not only do I not hate my (large) self as much after reading this but, now I know why I am not sleeping at night and everyone around me is the most irritating beast I’ve ever experienced.

  13. Sarah said

    I did two egg retrievals. My friend who has done a good number of ivfs had two words of advice: water and sleep. I am a person who gets a lot of headaches/ migraines. I went to bed as much as possible at 10pm and drank lots of water. I did not get any headaches.
    The first retrieval made me very bloated – I could hardly turn around – had a bit of stomach fat that I had never had much of before. Second time – by the end had mild ohss – my face was even swollen- last two days was quite groggy. But it is now two months since and I have a muffin top and a pouch – I am eating no more than before! Exercising the same – will have to cut out carbs as written in the article – think I will blame my leaky follicles and stop beating myself up.

  14. Hayjay said

    I know this is so late from when the post was created.

    I just don’t know what to do! I’ve has two laps in one year with a very aggressive case of endo.

    After my second lap they suggested (didn’t really give me a choice) to start Decapeptyl for a 4 month course.

    I took my last shot last month, and in the last few weeks I have been gaining weight like crazy. I’ve never had a problem with weight gain and day by day I see myself changing. I’m eating right and never used to (I used to eat whatever I wanted whenever and never exercised) Im exercising regularly and can’t seem to control it.

    I’m uncomfortable in my own skin and feel helpless! It’s started because it all started happening after my last shot where the effects should be starting to ware off?

    Any advice?

    Thanks!

  15. Lori said

    Thank you so much for the information! I just finished lupron and experienced the hot flashes, weight gain and definite stupidity! 🙂 my husband would just laugh at phrases I would say that made no sense at all. I thought maybe just too much on my mind but nice to know that lupron could be the reason 🙂 I expected the weight gain though.

    Thank you again!

  16. Kimberly said

    Hi can you please tell
    Me your protocol When you took decapeptyl? My dr wants me to do decapeptyl and menopur and I have never heard of this. I would really appreciate your response. Thanks so much!

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