Depot Lupron: what doesn't kill you makes you...hotter?

I just started month two of the dreaded Depot Lupron to treat my stage III endometriosis and presumed beta-3 integrin deficiency. I don't know about any of you out there who've taken this, but for me this stuff is poison to my body and my mind. It honestly ranks up there at the top of the list of all-time unpleasant infertility-related activities for me.

I feel just completely taken over by Depot Lupron. This time most of the first month wasn't so bad physically (which is why you haven't heard me whining before this). For the first three weeks, I didn't seem to have many mood effects and experienced really no hot flashes. If it hadn't been for the prodigious three weeks of bleeding, I would almost have thought I'd gotten a bum batch of the stuff.

But all that changed about two weeks ago. Suddenly, the bleeding stopped, and instead I felt...hot and sweaty...had heart palpitations....and felt a profound bleakness descend (as evidenced in my last post).

Because I struggled when I took Depot Lupron last summer, I asked Dr. Schl. if there was anything I could take that would help ameliorate the mood and physical symptoms (apparently there is something, called "add-back therapy" that replaces a bit of the progesterone that your body isn't making). I asked for it not just for my sake, but for poor Will's and Moxie's sake. Not to mention the sakes of my patients and of the populace of the greater New York City metropolitan region at large. So this time, once the hot flashes and blueness descended, I started taking small doses of synthetic progesterone. It hasn't eliminated my symptoms, but I think it does lessen them a tad (hard to tell, but I haven't had to change clothes in the middle of the night because I'm soaking wet, or gotten super irritated at anyone, or killed Will, or taken a mental health day...so I think so).

So these little white pills seem to be helping, but the original prescription didn't include enough pills to do this twice (originally, we were only doing one dose because we were planning to cycle with the egg donor in December).  Given this, I called my nurse. You may remember, I haven't been thrilled about her from the beginning of our donor egg adventures...

When I reached her, I asked for a refill, and she said ok. But she also said (1) that I am the only patient she has ever heard of ask for a prescription for add-back therapy at the Denver clinic, and (2) that she thought it might decrease the effectiveness of the Depot Lupron for dealing with endometriosis and beta-3 integrin deficiency (I can't remember her exact words on this, but she raised it as a concern of hers). So I asked her to check on this and please get back to me.

I got off the phone and realized I was left feeling vaguely uneasy after our call. Why tell me I'm the only patient to ever request this? Her comment made me feel like I was asking to be coddled. Once I realized that's what was brought up for me, I was annoyed. Why shouldn't I be able to take something to make this a little bit easier if it's out there? Why shouldn't all of us?

And then on top of that, why opine that taking the add-back therapy might reduce this awful drug's effectiveness? Because the only thing worse than feeling like crap while taking this damn drug would be taking this drug and feeling like crap for no reason. And why would Dr. Schl. have prescribed the add-back therapy if it could cancel out the effects of the Lupron treatment?

Sigh.

Yesterday I got an email from her that Dr. Schl. said all is fine, nothing to worry about, take the add-back, the Depot Lupron will still do its job. So really, was all that necessary?

It's been an occasional pet peeve of mine throughout my medical journeys, this implying you are high maintenance for asking to have something suck just a little bit less. When I had lymphoma in my twenties, I had a mediport surgically implanted under the skin on my left upper chest to receive my infusions. For every chemotherapy treatment, the nurse would place a needle (called a Huber needle) through the skin that covered the port and connect it to my IV line. You should check it out, folks, because this is no ordinary needle; it's more like a thumbtack. And so it hurt. Especially because it was done every other week and your tissue really doesn't heal well when you're getting chemotherapy. I knew that there was a new cream on the market, a topical analgesic called EMLA. So one day I screwed up my courage and I asked if it could be prescribed for me. And I was told "That's only for pediatrics. We never prescribe that for adult patients." Which silenced me immediately. I felt like a big baby.

Similarly, after our first and second pregnancy losses at 7 and 8 weeks, my then-ob/gyn advised that I should have my D&Cs in his office sans anesthesia or any pain control beyond ibuprofen. So I did, twice, because I felt like such a wimp asking to be knocked out, when he'd made it so clear after I asked for an OR procedure that it should really be fine - and his other patients didn't mind it. Actually, I found the in-office D&Cs to be terrible, both physically and psychologically (especially because one time the equipment malfunctioned and he had to manually scrape the lining of my uterus). And consequently, I no longer use that ob/gyn. But why make it so tough?

So, yeah, obviously this phone call touched a nerve for me. And Depot Lupron has the effect of exposing all of my nerve endings and making everything feel...well...hotter. This nurse isn't so bad, but I do wish she'd keep her opinions, especially when they aren't based on scientific evidence, to herself.

Looking forward to finishing the dreaded Depot in about a month. Really hoping my sister checks out and can cycle so we have something to transfer, and then hoping that these two months of suffering help implantation go at least a little better than it might have.

I wanted too to say thank you guys for all of your comments and thoughts on the last post. It helped, it really did, to read that you all get it, or that you might not totally get it but you realize that. It means so much that you've stuck with us even though the tough times, that you're still reading and rooting for us. We appreciate it more than we can say.

Mo

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Depot Lupron: what should I expect?

I'm turning to you bloggers, because, as always, I know that some of you have been here in my shoes, wherever it is that I'm standing at the moment.

And where I'm standing today is a bit of a fearful place. I injected the depot lupron on Wednesday night, 2.5 days ago, which was Day 4 of my cycle. Here's hoping my endometriosis is shrinking as I type this and helping pave the way for a smooth embryo transfer with successful implantation!

So far, not feeling so much of anything. But I have heard Baaad things about this drug.

I've done a couple of IVFs with a long lupron protocol in the past, so I've been on the daily lupron formulation for 10ish days before starting stims and then a low dose throughout those cycles.

But I've never taken depot lupron (and can I just say that that was a huge honking needle?! I mean, was that really necessary?!).

As I wait for the depot lupron to take effect, I'm a bit nervous.

So I'm turning to you.

Those of you who've taken depot lupron, could you take a minute to tell me your experience?

I want both the not-so-bad as well as the downright sucky...

Some of my questions: What dosage were you on and for how long? Dr. Schl. has me on 3.75 mg for two months (so two injections.) Did you have breakthrough bleeding at all? Did you ovulate while on it? How severe were the hot flashes? Did you gain weight? Did the injection impact your mood? How was your energy level? Were you too tired exercise? Did you lose your libido?

Also, was your experience the same throughout or did the symptoms worsen the more doses you took?

Anybody NOT have side effects?

Also, any advice out there? Something you wish you had known when YOU were taking it?

Finally, what was the impact of taking it? Any lessening of endo symptoms? Or change in Beta Integrin status? Anybody (out of those who used before transfer) have a successful transfer after it (...or not?)?

As always, all of your thoughts and experiences are welcome. Hopefully this will become a resource for those who follow in my footsteps taking depot lupron down the line - so know your comments will be much appreciated by me and by others out there searching for information about depot lupron for endometriosis and in preparation for embryo transfer.

Thank you!

Mo

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Your endometrium is like a fruit cake...a slightly abnormal fruit cake

I finally connected with my RE to get the results of the endometrial function test.

Apparently, the biopsy results showed mild glandular abnormalities; i.e., the "fruit cake" of my endometrium is not looking quite as it should. Specifically, there was one marker present (cyclin E) that is only supposed to appear during the early secretory phases of the menstrual cycle (days 5-19), but in my endometrium, was present much later, during the time when implantation would occur. Which can negatively impact an embryo taking root.

My RE said the level of the abnormality was "mild" and so he says he is inclined to take the news "with a grain of salt." (Grain of salt on the fruit cake of my endometrium. Me thinks this is too many metaphors!) The cyclin E abnormality could be due to morbid obesity (except that I'm not overweight), or infection (not the case), or endometriosis (hey, I have that!), or stress (that too!). Since I've already had a laparoscopy this year to remove endometriosis, there is really not much else to do on that front. And stress, well...I'll do what I can, but it's ubiquitous, you know?

Bottom line, it's unclear what to make of the results, sigh. But the RE doesn't think we should give up on the old uterus just yet - or at least not because of these results. Again, I'm left wondering a bit why we did this test. But I guess the answer to that is to make sure there were no glaring abnormalites. And there weren't. My fruit cake was only subtly off, not grossly malformed.

So that's, I suppose, good news?

The Yale researcher who does this test has a twitter feed called placenta talk. The intro page has quite the graphics, if you want to click over. Who knew the placenta was, um, actually a little gross?

The immunology results we had drawn from the wizard are still outstanding, so we'll see what further murkiness that adds to the picture in a few weeks.

Meanwhile, Will and I will continue to mull and muse and sit in the trenches processing things. Which these days takes place on a mostly nonverbal level. Which is OK by me. For once, I'm out of logic, out of scientific notions, out of problem-solving ideas. Just plumb run dry of everything. So we're just going to sit here where we are for a bit, until we feel like picking ourselves up, dusting ourselves off, and trying something* again.

Mo

*"something" potentially being high dose IUI, IVF with CGH/microarray, donor egg, or adoption.