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!
The School of Hard Knocked-Up 