Posts Tagged Lupron

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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When a doctor says “I can’t help you”

I did 5 cycles with my own eggs before switching to DE.  Five cycles is a lot – a lot of money, a lot of hassle, a lot of pain, a lot of tears.  But when I look back now on it, and ask myself “am I sorry I did it?”  the answer is, basically, no.  If I had known going in what was ahead of me, yes, I would have gone to DE or adoption immediately and not looked back.  But I didn’t know what was ahead of me, and as a result doing the cycles was necessary for us to feel that we had really exhausted the possibility of having biological children before we were ready to move on.

There is only 1 cycle that I really regret, and that is not the last cycle but cycle #2.  Cycle #1 I had done at a clinic relatively close to my podunk hometown.  It had not gone as well as I had hoped – 3 embryos were transferred on day 3, one so fragmented it looked like pizza and the other two having a pretty meager cell count.  I ended up pregnant, but went through a low beta hell and ended up miscarrying.

When I went in for an ultrasound during the hell period, the friendly RE on call told me not to worry, just being able to get pregnant was a good sign, and many women go on from a miscarriage on the first cycle to get pregnant on the second.  Unfortunately this RE had apparently not studied my chart carefully enough, because when I went in for my follow-up appointment my own RE told me that things didn’t look good, my embryos were of poor quality, and this was probably because my eggs were getting too old.  I was in a “gray area” where maybe I could get pregnant and maybe I couldn’t.  She was reluctant to let me cycle with them again, and thought I should start thinking about donor egg.

So what did I do?  Did I listen to this doctor, for whose special expertise I had paid a ton of money?

No, of course not!

I had just gotten pregnant, I was so close, this couldn’t be taken away from me so quickly.  I begged and pleaded with the clinic to let me cycle again.   Eventually they relented and let me do so.  And the cycle was a total disaster – they put me on microdose Lupron to get my ovaries in overdrive and then blasted me with massive doses of Follistim.  The result was a giant dominant follicle and the dreaded phone call on the day of transfer, “Your embryo is probably dead, do you want to transfer or should we call it off?”  We decided to transfer but knew going in we were probably just giving the embryo a more comfortable burial.

Something that still pisses me off to this day is that when I asked my nurse at the clinic why I had gotten a dominant follicle, she said “We don’t know, sometimes it just happens.” “It just happens”, my foot.  It happens when you are undersuppressed, and I was undersuppressed because I was on microdose Lupron instead of regular dose.  I switched to Cornell after this cycle, was put back on regular Lupron, and made lots of eggs and lots of beautiful-looking embryos.  Sadly, none of those stuck either, at least not for good, but at least the clinic knew what it was doing with me and had an appropriate protocol.

So was my first RE right when she said that I wouldn’t be able to have a child with my own eggs?  I don’t know.   I miscarried on cycle 4 because of a chromosome deletion, a problem that is not age-related; it is, as my RE said, “just bad luck”.   Maybe if my luck had been different I would have carried to term, or maybe I was lucky just to get pregnant at all.  But what my first RE was really right about was that she couldn’t help me. She did not know how to handle the problems we were presenting her with.  She told us so but we did not believe her, and as a result we wasted energy and money on a cycle that might have worked if we had switched to a clinic thatdid know how to help us.

If I had it to do over again, I would say that when your RE tells you they don’t know how to help you, it’s because they really don’t.  It doesn’t mean you have to give up – you may be able to find another doctor or another clinic that can help you.  But cycling with an RE who tells you they don’t know how to get you pregnant is a waste of time, energy, and money.  When a doctor says “I can’t help you” – believe them.

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Exercise, Weight, and IVF

After a couple of cycles of IVF, I started to notice that that post-retrieval bloated look wasn’t really going away between cycles.   Yep, it was that dreaded cycle weight gain, 5 pounds or so per cycle.  After every cycle, I would start exercising again, get in some minimal amount of shape, lose a bit of the weight, start to feel better in my skin, and then it was time to cycle again.  Cr*p.

After my last cycle with my own eggs, I decided to take advantage of the situation to get really serious about getting fit again.  And can I tell you about the subsequent love affair with lifting really heavy stuff, and the total getting-in-fab-shape-itude that resulted, brought about by this fantastic book?  No?  Dang.

But in any case, what you need to understand is I love to exercise.  It not only makes short shrift of the IVF pudge, it makes me feel great.  As in sane.  As in something that is sadly missing in my IVF cycles, and I would like to have more of.

So that is why I got curious about whether it is OK to exercise during IVF cycles.  There’s surprisingly little information about this out there, so this is my small contribution.

Usual disclaimer: I am not a doctor, just a curious person.  This is what I found out but I may have missed something big.

1. Why do we gain weight when we are doing an IVF cycle?

I used to think that the weight gain was because I was doing comfort eating – lying on the sofa chowing frozen pizza instead of my usual veggie-intensive home-cooked dinners.  But for my most recent cycle, I was tracking my weight daily.  I was slowly (very slowly) losing weight before the cycle, thanks to my awesome weight-lifting routine.  On the day I started on the pill, my weight loss slowed even more.  One might even say I started gaining.  But that was nothing compared to the day I started Decapeptyl (this is basically the same thing as Lupron).   The day after I started taking it my weight started shooting up.  And it continued to skyrocket until I flew to my clinic just before retrieval… at which point I didn’t have my scale any more, so we don’t know what happened.  You should note that my exercise and diet did not change at all during all of this.

So where is this weight coming from?  Obviously, when you do a retrieval you get mighty bloated afterwards, and a lot of that weight is water weight which goes away again after things clear up.  But as far as I can tell the Lupron is playing a different role.   Unfortunately, I don’t remember where I read about this and so there is the chance that I am actually making this up (have I mentioned that I am not a doctor?), but my understanding is that Lupron alters your metabolism so that you are more likely to store carbohydrates as fat.  Once you go off the Lupron, you have high estrogen levels – from your leaky punctured follicles if you had a retrieval, from the estrogen patches or pills if you are on a DE or frozen cycle – and estrogen has the same effect.   Presto, weight gain.

Note: there may be other sources of weight gain that I know nothing about, this is what I did find out about.

2. So if I go on a low-carb diet during my cycle, will I avoid gaining weight?

Maybe.  But in my totally unprofessional opinion, it is probably not a good idea to be on a diet during your cycle.  You want your body to believe that it is not facing a famine – supplies are lush and there is plenty of food around to support little ones, so go ahead, baby, get pregnant!

3. I heard that it’s not good to exercise during your cycle.  Why is that? Because, frankly, I will go insane if I don’t exercise.

I hear ya, sister.  And it is for this reason that I searched in the bowels of Fertility and Sterility to find out more about the relationship between exercise and IVF.   There wasn’t much there. Here is what I did find out.

First, exercising during or after stims is a really bad idea because it can lead to ovarian torsion. “Ovarian torsion” is when your giant, swollen ovaries decide in their sympathy with your movement to do a cartwheel in your belly, thereby twisting off their blood supply.  As you might imagine, if this happens you will be in pain like you would not believe.  And unless you get to a hospital pronto and they untwist your ovary, you will lose it.  And that is something no infertile gal needs in her life.

What’s worse, even exercise the month after your cycle can lead to ovarian torsion, as this case study attests (warning: this is a pretty horrific story).   This is pretty rare, though.  One of my non-RE doctor friends told me that that didn’t need to stop me from exercising, I should just make sure that if I get terrible belly pain the month after stims I should rush to the hospital and make sure they check me for torsion.

Second, there might be a correlation between long-term exercise and problems in IVF cycles.  I only found one very short article about this so you might want to take this with a grain of salt.  And the gist of the article is not really actionable – what they showed was that it didn’t matter if you were exercising regularly now or not, but if you had been exercising regularly for at least 5 years, then you were at a higher risk for bad cycle outcomes (cancelled cycles, BFNs, chemicals).  It’s not clear why, it’s also not clear whether this holds true even if you account for low BMI (which is associated with worse cycle outcomes).

Now there are always a lot of studies that show correlations between various things and better cycle results (whole milk ice cream, anyone?).  Personally, I don’t think you need to live your life around this kind of thing.  But you might want to ask your RE what s/he thinks.

4. I’m not stimming – I’m doing a DE cycle / a frozen cycle.  So can I exercise?  Huh, huh, huh?

I guess you should probably ask your RE.  But if you want some free assvice which is worth what you pay for it, I say sure, go ahead – I did.  And let me tell you what was so great about it.

Like many people, Decapeptyl (i.e., essentially, Lupron) made me feel terrible.   Normally, I am a chipper morning person, but on Decapeptyl I have massive trouble dragging my poor sad body out of bed.  I also get a headache, am exhausted, can’t concentrate, etc.  But by exercising during my cycle I discovered that intense exercise made me feel 100% better, really quickly, and the effect lasted for quite some time after the exercise.  It was hard to believe when I woke up in the morning feeling like I got hit by a truck, but once I had dragged myself to the gym and started working out, I felt better right away.  Intense exercise that required concentration (have I mentioned how much I like lifting heavy weights?) totally dispelled the Decapeptyl fog.  It was like a f*cking miracle.

And this, my dear reader, is also how I found out the following amazing fertile fun fact, which to my knowledge is completely undocumented in the world of infertility blogs – I told my clinic about it and they did not know it either, so chalk one up for me, your amateur infertility sleuth.  I was amazed that even though the Decapeptyl made me feel like a hungover sloth, it did not seem to affect my athletic performance at all.  In fact, if anything, I was performing substantially better than usual… e.g. I improved one of my lifts from 7 kg to 9 kg in 2 weeks – an improvement of 30%, highly unusual).  That was when I remembered something I had read about a while ago… that Lupron is on the International Olympic Committee’s list of doping drugs.  That’s right, gals, for all the horrible side effects that Lupron and Decapeptyl hand us, they hand us one positive side effect as well – they make it really easy to build muscle.  As far as I can tell in my totally unscientific opinion, they do this because they block your estrogen production.  So take advantage of it while you can, until your estrogen patches/pills kick in.

Did I get something wrong?  Do you know something else about exercise and IVF?  Please add in the comments – I’d love to know!

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The doctor doesn’t know what it’s like

When I started my first IVF cycle, I had read a book that suggested that you should take a month off work when you are cycling, to deal with all the appointments, stress, and what not.  I asked my RE if that was really true.  “Oh, no”, she said, “you only need to take off the day of the retrieval.  And maybe the next day.”

Yeah, right.

I work in a job that requires mental effort and concentration.  Those things were completely shot once I went on Lupron.  The week before my retrieval my colleagues sent me home because I was forgetting my sentences in the middle and staring into space.  The week after my retrieval I spent lying on the sofa in pain.  Thank god I have a job where I can work flexibly.

So, do you have to take a month off work?  No, you don’t.  People have different reactions to the situation.  For some people throwing themselves into their work helps to reduce their stress level.  It also depends on the kind of job you have – even though I had the short term memory of a goldfish I found rote work and things where you work with your hands quite soothing during my cycle.  But if your job requires you to be mentally with it, or to be a diplomat of tact, you might want to think about taking some time off.  And if you are an air traffic controller, for god’s sake, take pity on the rest of us and stay at home.

But the real moral of the story is not how much slack to cut yourself during a cycle (answer: as much as you possibly can).  It’s that the REs are very savvy about how to run IVF cycles,  but they don’t have a clue what it’s like actually being in one.  They don’t know how crazy you get, how much it can affect your emotions and concentration, how unbelievably stressful it is.

Before embarking on my last cycle with my own eggs I asked my RE what I could do to help manage the stress level of the cycle, since I knew going in it wasn’t going to be pretty.  He said, “We have a psychologist – you could make an appointment to see her while you are in town.”  Are you kidding me?  2 weeks of total hell is going to be offset by one psychologist appointment?   That underscored it for me – REs just have no idea what you’re going through.

So if you want advice about how your cycle should be managed, how many embryos you should transfer, etc., ask your RE.  But if you want to know how hard it is and how to stay sane, don’t ask your RE – ask your fellow travellers or a therapist who is familiar with infertility.

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