Archive for Meds

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

April 13, 2009 at 8:00 am · Filed under Meds ·Tagged , ,

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!

Comments (17)

Which is better, PIO or progesterone suppositories?

March 24, 2009 at 8:42 am · Filed under Meds ·Tagged , ,

There are two ways to answer this question – which is better for your embryos, and which is better for you.

What about the embryos?

PIO is the gold standard for IVF – it is what clinics have been using for a long time and know a lot about.  That is why many clinics continue to use it.  Nevertheless, the available data shows quite strongly that suppositories are just as good as PIO in terms of supporting pregnancy.  So if your RE switches you to suppositories – or has you on them from the get go for whatever reason – you do not need to worry about it endangering your pregnancy.

What about me?

If you read infertility blogs, it seems like everyone has an opinion about which form of medication is easier to use.  The people who are on PIO wish they were on suppositories, and the people who are on suppositories wish they were on PIO.  I have been on both, and in my humble experience, there is absolutely no argument: progesterone suppositories are sooooooooooo much better than PIO shots.

Still, even I have to admit that there is some argument to be made, so let’s look at the pluses and minuses:

The obvious advantage of suppositories is that they don’t hurt.  They don’t make painful lumps in your rear.  They take just a second to insert.  They don’t require the presence of another person in order to execute (assuming you have not graduated to the tough veteran status of the PIO self-injector).   And in my case, unlike PIO they don’t cause raging infections inside my butt muscle which drag on for months.

In my mind, there are three big disadvantages of suppositories.  First, they make a mess.  Not to get too graphic, but you feel an unpleasant running sensation from time to time which makes you want to be in a bathroom right this very second, and the suppositories can easily leak all the way through your garden-variety pantiliner.   The second disadvantage is that you (or at least I) have to use the suppositories three times a day.  That means three times a day you have to remember to do something, and if you are me you will be spending a bit too much mental energy wondering “did I or didn’t I already?…”  The shots, in contrast, only happen once a day – we just did ’em first thing in the morning and were done with it.  The third disadvantage is that… well… certain activities might be less attractive to your DH because he is worried they might make him sing an octave higher.

Still, weighing the good and the bad, I would pick suppositories in a heartbeat.  I’m just not that big a fan of pain.

Comments (3)

Progesterone suppositories I have known and loved

March 24, 2009 at 8:38 am · Filed under Meds ·Tagged ,

Progesterone suppositories: simple and effective.  There’s not too much to say about them.  Some key points you might like to know:

1. Remember to wear a pantiliner, or perhaps better yet, a maxipad.  OK, that’s kind of obvious, but if you forget, oh how you will be sorry.

2. Do not stick them up too far.  For some reason, REs do not feel it necessary to give you detailed instructions of what to do with these things.  Insert in vagina.  But what they fail to tell you is that if you start to get paranoid that the suppository will fall out, and you therefore stick it up so far that it touches your cervix, you will get cramps.  And then you will begin to have all kinds of paranoid imaginings that you are killing your embryos.  And that is not pleasant.  So don’t stick them up so far.  My nurse said, just inside the vaginal opening is fine.  They won’t fall out.

3. But if for some reason they do fall out… You should call your clinic to ask them for advice.  But while you are waiting for your callback, I can share a couple of considerations from my totally unprofessional, non-medically-relevant experience.  First: generally speaking all the progesterone is absorbed in the first 15-20 minutes, so if it has been longer than that, you probably don’t need to worry about it.  But: while you can expect the suppository to leak stuff out onto your conveniently placed maxipad, if you see something come out that actually really looks like the suppository when you stuck it in, there is some chance that it did not actually get absorbed.  And in that case better safe than sorry.  Taking an extra suppository would not really hurt anything.  Probably.  But ask your clinic, don’t take my word for it.  Assvice is free, and it’s worth what you paid for it.

Comments (3)

What to do if your PIO injection site turns red

March 24, 2009 at 8:35 am · Filed under Meds ·Tagged ,

Usual disclaimer: I am not a doctor, I am only relating what I experienced. Please contact your clinic for advice in your situation.

In my experience, there are two reasons why you might be getting a red rash on your rear.  Both require you to get in touch with your clinic ASAP to change around how you are doing your PIO.

1. You may be allergic to the shot.

This happened to me on progesterone in sesame oil.  My butt hurt, but that seemed to be par for the course with PIO, so I ignored it.  But when I went in to have a local nurse give me the shot while Mr. Nishkanu was out of town, she saw I was getting red rashes on both sides of my butt.  She called the clinic and it turned out I had become allergic – not to the progesterone itself but to the oil it is suspended in.

Sesame and peanut oils are the most common kinds of oil used for PIO.   They also are both potent allergens, so allergy to regular PIO shots is not so unusual.  (Note: I am allergic to the PIO in sesame oil, but I am not allergic to eating sesame, so an allergy to your shots doesn’t mean you can’t eat sesame or peanuts any more).

The solution was simple: switch to Crinone or progesterone suppositories, at least until the inflammation goes down.  You can in the future use PIO shots in a different base.  PIO in olive oil worked great for me.

2. You may have an infection.

The second time this happened to me, I not only had a red patch on my rear, I also had swollen lymph nodes in my groin and, as I found out when I got to the doctor, a mild fever.  The diagnosis was that the injection site had gotten infected.  I went on antibiotics, and I switched to only injecting on the uninfected side.  Unfortunately, the other side was soon infected too and I went on progesterone suppositories instead.

This infection is nothing to be cavalier about.  For one thing, although there are no studies on this, it would be logical that having a mild fever and swollen lymph nodes near your uterus is probably not a good thing to support implantation.   For another thing, infections inside your body are just not good.  And the infection, at least in my case, was tenacious.  The antibiotics seemed to clear it up, but when I got the flu a month later the infection came back – even though I hadn’t had an injection in weeks.  And on my next cycle I got the infection again.  On my final cycle, we decided to do only one week of injections and then switch to suppositories to avoid the problem happening again – but after 3 days I could tell an infection was gearing up to start again (by a small warm patch on my rear) and switched right away to suppositories.  So it seems like if you get it once, it lies in wait to come back again.  If I had it to do over again, I would just use the suppositories every time after having had the infection once.

Leave a Comment

Holy poop, my sweetie is out of town and I need a PIO shot!

March 24, 2009 at 8:30 am · Filed under Meds ·Tagged ,

aka, how to give yourself a PIO injection.

Like most normal people, when we started down the IVF route there was absolutely no way I could ever imagine giving myself a PIO injection.  I had enough mental blocks about the Lupron injections (which my husband usually gave me, but I occasionally needed to do myself).  The PIO needle is giant, and even if I could somehow bring myself to jab it in, how the heck was I going to even see what I was doing?

But, the day came when Mr. Nishkanu wanted to go out of town while I was on PIO.  There’s only so many trips that can be cancelled because I need him to give me a shot.

Now obviously, if you have a very good, very brave friend you can ask them to do the shot for you.  If your very good, very brave, very willing friends are not around, then you or your dear sweetie can call around to local clinics and hospitals to find someone to do the shot for you.  In one case, I ended up in the hospital oncology ward where a nurse was willing to do the shots for me.  I was super embarrassed about holding them up with something that was so much more trivial than what they are usually dealing with until the nurse closed the door and told me about her own struggles with infertility.  That was a balm for the soul.

Nevertheless, the day came when I was in a strange town, alone, with the nearest hospital a few hours away, and needing a PIO shot.  And so I can now tell you: no matter how scared you are of doing it, no matter how impossible it seems, if you absolutely need to do it, you will find a way to do it.  And it is not actually that bad.

What I did was this: Mr. Nishkanu had drawn circles for me where I should put the injection.  I laid down in bed with all my supplies, wiped off my selected circle with alcohol, and prepares the injection.  Then I made sure I was lying pigeon-toed (this relaxes the mucle you’ll inject in), and twisted myself around slightly to get the tip of the needle more or less into the circle he had drawn.  Now, honestly, I really couldn’t see that well what I was doing, but my goal was not to give myself a perfect PIO shot, it was just to get the darned stuff in.  And… I stuck the needle in.  All the way in.  And it really wasn’t that terrible or painful.

Then I took a breather and after feeling a bit more mellow, I pushed the plunger down slowly to inject the progesterone (note: actually I should have checked for blood and you should too, but once again, perfection was not the goal for me here, it was just getting through it, and in the excitement of the moment it was hard to remember the proper procedure).  Getting the plunger down was the hardest part because my grip was a bit awkward at that angle, but it was not really that hard.   I gave the injection a few seconds to seep in and then pulled the needle out, and pressed down on the site to stop the bleeding.  Then I gave out a little prayer of thanksgiving.

Once I did it once, it was not so hard to do it again.  In the next cycle, I actually ended up giving myself a PIO injection in the bathroom on an airplane.   I definitely felt like a tough cookie after that.  It was not easy (and I think there every surface in that bathroom had been wiped with an alcohol wipe before I got going), but again if it has to be done, you can do it.

And with that I would like to give a small public service announcement: if you are waiting in line for a long time for a bathroom on the airplane, and are tempted to curse out the person who is taking so long, just remember that you are probably much happier they are doing whatever they are up to in the bathroom than back in their seat.

Note: for lots more great stuff on how to give IVF shots,  go look at the IVF Shoot Em Up, which is chock full of information and videos about how to do shots for IVF.

Comments (1)

The most painless way to inject PIO

March 24, 2009 at 8:23 am · Filed under Meds ·Tagged ,

The truly most painless way, of course, is to use progesterone suppositories.  But that is a matter for another post.

The first time you get your supplies for the PIO injections and you see that giant needle… well, it is a chilling moment in the life of an infertile gal, as well as that of whatever individual will be in charge of doing the injections.  When you actually get your first injection though, chances are, you’ll say to yourself, “gee, that really wasn’t so bad.”  You’ll say that for 2 or 3 days, then your tune will change.  You will develop big, painful lumps in your rear where the oil has collected.  You will develop scar tissue and when your DH or otherwise designated injector hits the same site again it  will yield a tiny but forceful mushroom cloud of pain.  You will be tempted to smack them but will only be held back by the knowledge that, for god’s sake, they are holding onto a 1 1/2 inch long needle which is currently embedded in your butt.

Sadly I cannot offer suggestions that will turn this into a painless affair but I can suggest a few small tips that help a bit.

1. Use the thinnest needle possible.  This may seem pretty obvious but REs are not always so clueful about how small a size will work.   The smallest possible size that can work depends on the kind of oil the PIO is injected.  There’s also a trade-off between thinness of needle and how long and hard you have to push on the needle to get the progesterone in.  To me it seems obvious that that trade-off should be made to benefit the thinness, and let the injector sweat it out a bit, but REs don’t always feel the same way.  Ask Dr. Google about how small you can go with the kind of PIO you are using, and ask your RE for that needle size.  Note that when the needle gets small you can make it easier to inject the PIO by warming it to body temperature before the injection – that makes the oil more fluid.

2. Do not ice beforehand.  This seems like a good idea – after all, it numbs the skin – but it has a very unpleasant side effect: it causes the oil to congeal in the spots where it has been injected and create painful lumps which your injector will have to avoid in the future in an attempt to dodge those smack hand-outs we discussed previously.  In short, a little less pain today leads to a lot more pain tomorrow.  Once I figured this out and realized we were going to have to go iceless, I was very afraid of how much the shot would hurt without the ice.  And you know what?  It hurt about the same.  It really doesn’t make much of a difference.

3. Have your sweetie massage the injection site for 5 minutes after injection.   This helps to get the oil spread out and absorbed better, so that the painful lumps take longer to form.

4. Apply a heating pad after the injection.  This again helps against the formation of lumps.

5. Distract yourself.  You remember that video you got with your PIO medication?  The one where the wife leans over the dresser, and looks up lovingly at her husband while he jams a giant needle into her rear?  I don’t think you need me to tell you this is not a realistic scenario.  I appreciated that Mr. Nishkanu was overcoming a major ick factor in performing his task, but he didn’t need to get my appreciation while he was in the act.  He was only allowed to do the injection after I had set myself up in bed with a trashy novel, a juicy magazine, or my beloved internet.  He would go about his preparations totally ignored, while I waltzed away into the world of fantasy until the darned thing was over.  Better for both of us that way.

Comments (2)

The ins and outs of progesterone

March 24, 2009 at 8:20 am · Filed under Meds ·Tagged

Progesterone in sesame oil, olive oil, ethyl oleate; progesterone suppositories; Crinone – I’ve been on it all and had plenty of the little disasters that accompany them.   Follow me in the next couple of posts as I explain the good, the bad, and the ugly.

Comments (1)