Wednesday, November 30, 2011

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

Click here to subscribe
Add to Google Reader or Homepage Subscribe in NewsGator Online Subscribe in Bloglines Add to My AOL

28 comments:

sprogblogger said...

That nurse should be smacked. Your previous OB should be walloped. Honestly, I believe that a scary minority of medical professionals have a bit of the sadist about them. Why anyone would try to make someone who's going through something awful experience that awfulness more fully is just beyond me. Sorry you were made to worry and second-guess, and even sorrier you're back on the Devil Lupron.

alyssa ettinger said...

mo, i grew up with physicians and learned a long time ago that if you don't speak up--and LOUDLY--you get nowhere. so for you and all the other readers of your blog i'm going to say this: it's your body. the doctor might be the expert but has he/she had the procedure? no. yell, scream, complain, i don't care. it's your care and you have a right to feel safe in the doctor's office.

duck said...

I agree, that nurse clearly is not that informed. I had add back therapy (prescribed by my RE at Mt. Sinai). Moron. Add back does help, I had 2 days progesterone, 2 days estrogen, etc. I find it hell too, my recommendation is physical exercise, the more you can do the better, it helps combat the crazies.

Hang in there Mo!

Nepsi said...

Honestly... even if you are high maitanence which you are not... well tough shit for them!!! You have paid a lot of your hard earned money to these people and it isn't wrong to ask for things to suck less. I have actually demanded a nurse switch because I didn't like a nurse I was given at the clinic. I ended up getting stuck with her this time and she let me go an extra 2 weeks on progesterone because she "forgot" to follow up with me. Ug. Progesterone isn't near as bad as lupron. That stuff is pure evil in a vial (or should I say vile in a vial... ok that was dorky). Also what is with your nurse thinking she knows everything. I assume that progesterone would not be a problem since it is the estrogen they are trying to suppress to kill of the endo. She obviously completely lacks empathy. IVF is damned hard and I could not imagine taking lupron for months. I took it 4 weeks last time and by the end I was on the verge of going on a rampage if only my head would stop hurting long enough. Also there is nothing wrong with asking for some pain relief. I am stupid and try to tough things out on my own and all that got me was almost dead from pericarditis. We need to ask for help and quite honestly both cancer and IF suck quite enough as it is without making it worse.

I had a similar experience with D&C in office. I was wide awake... remembering everything and the gyn actually bitched to the nurse that with the drugs he gave me I should have fell asleep... oh well excuse me sorry to wreck your day with my damned D&C. UG.

Take care. Perhaps I should steer clear of the city for the next couple of weeks! :)

mommacommaphd said...

This kind of thing really pisses me off. I think it's because you're a woman. For women, it's seen as weakness or whining. For men, it's seen as patient advocacy.

That's why so many women with heart disease go untreated- because their symptoms are stress or heart burn or something else and not taken seriously.

I think there's a clear disparity. How are men checked for testicular cancer? A manual exam followed up with an ultrasound if necessary.

How are women checked for breast cancer? Mammogram- smash your breast between two plates and irradiate it.

My mother has been left black and blue, had blood ooze out of her nipple supposedly because she had dense breast tissue that necessitated extra mashing. I don't think damaging a woman's breast is in the best interests of her breast health.

This kind of crap isn't done to men. You think a urologist would suggest a man have a vasectomy with just an iburpofen and an 'atta boy'?! Don't think so. But that ob/gyn thinks you should have a D&C that way? BS.

Stand up for yourself and don't feel bad about it.

TurtleMama said...

Stand your ground, Mo. With all you have been through you deserve the best medical care and anything that can make your journey more bearable. I don't understand why that nurse would say that. I'm so glad Dr. Sch. came down on your side.

Anonymous said...

Hi Mo

Its an interesting perspective being on the patient side of the gurney, no?

You've had lots of experience sadly...as have I...as a doc during residency and during my years in practice and more recently as an IVF patient.

While the experiences as a patient largely sucked, I ran across some gems of health care providers. They were gems because they listened. The ones that didn't darn near killed me (our first IVF, which worked, resulted in a ruptured cornual ectopic pregnancy in the stump of a tube I'd had removed a year prior...why did it rupture? Because no one listened to my concerns about RLQ pain, bleeding and shoulder tip pain, as well as my concern that this was an ectopic...because it was on the side where I'd had the tube previously removed...no one believed there could be an ectopic on that side. The tube was gone wasn't it?...cue full on resucitation that happened in front of my husband...) The fact that there was a stump of that tube left behind in the first place is another issue althogether...

So, lesson learned. I didn't make enough noise. Who would have thought I'd have to? Voice your concerns. You're not being coddled, and you're not high maintenance. You're a woman with knowledge, an ability to think for herself, and as a result, you will not be a lupron victim, whose brain, and body becomes hijacked by a drug that truly is horrid.

You are your own best advocate. You will be a better Mother and professional for all of this; for recognizing when and how to make a little noise...

My worst moments as a human being occurred while on Lupron. Functioning as a physician on Lupron was the hardest thing I have ever done.

But luckily, I have a fabulous RE. Who listened, and who gave add back therapy to me too...so, you are not the only one. It made the world of difference for me, and allowed me to emerge from a cycle with my livelihood and sanity still intact.

So, enjoy your add back progesterone. Batten down the hatches on all other fronts, and be kind to yourself til the Lupron is done.

I will be following your blog with great interest as you head into this next cycle. I wish you all the best. I'm glad you have not given up.

Mo and Will said...

Anonymous,

thank you. your comment really moved me. I appreciate it. I'm sorry you've had the experiences you have had, too, and I hope you are able to get out the other side to a healthy baby or two in your arms.

Pie said...

Depot Loopyron sucks. Seriously, it sucks hard. I almost wish that the docs and nurses had to experience the effects of the meds they prescribe - then lets see who wouldn't ask for something to lessen the awful side effects. Grrr to that nurse.

newbie said...

Oh Mo, this post and the last one made my heart ache for you. It's so freaking unfair what you have to go through. I'm glad that Dr. S gave you the add-back and pissed that your nurse gave you a tough time about it. Maybe if SHE had to go through this she'd have a little more compassion!
I hope that the prescription helps a little bit with the side effects. And most importantly, I hope you get through to the other side as soon as possible!!

R. said...

That nurse sounds like a real piece of work. Should I go to CO and send her a message?

myfertilityjourney said...

I am going to start my 2 months of Depot Lupron next week, my friend told me to ask for the ad-back therapy for sure, she told me this Lupron will send me to cuckooland in no time so I e-mailed my nurse and asked, she replied that because I am going to be on it for just 2 months that they will not prescribe that to me. She stated that it was for patients that would be on it for a much longer time!!! So first, you are not the first one that has asked for it at CCRM, and second, thanks!! I will be requesting it again if it really makes me crazy which I already think it will since I was ready to jump from the 5th floor with the regular Lupron. Good for you for asking for what you want, I'm learning too to not be intimidated by nurses/doctors comments or opinions, we just need to speak up and get what we want. You go girl!!!

Detour said...

I'm so sorry the nurse was making you worry unneccessarily. I shudder to think what those D&Cs were like for you. I had twilight anesthesia for one a couple of months ago and thought I was going to die--it didn't knock me out and the pain was horrible.

Depot Lupron sounds AWFUL. So glad you can stay on the progesterone.

It Is What It Is said...

Ugh! I don't have any experience with Depot Lupron but have had my fill of incompetent, unprofessional medical care providers and I am sorry that she added insult to injury in the worry department.

I also just had to say that I could not be rooting for you and Will more if you were my IRL friends. I have been following your journey since inception, and cannot wait for your long awaited and much struggled for happy outcome.

Jen said...

Oh Mo...I am absolutely dreading the Depot Lupron. Almost everyone seems to have horrible side effects from it. Geeezzzz....the lengths we go to try and have a baby. Hang in there!

m said...

completely selfish comment: I am really relieved to know that the mediport isn't all that I thought it was cracked up to be. They were just coming into practice when I started my chemo and we opted not to get one. So, fresh digs for veins every other week...but hearing your thumbtack experience... yeowch! Even with the emla. Seems that chemo sucks no matter how you get it.

On being made to feel like an outlier - I wish it were limited to medical professionals. I got an email from our GC agency the other day which rubbed me the wrong way all day and I couldn't figure out why. The director was writing with good news - they may have another promising profile for us to review - and then I realized it was how she framed that news. She told us she had made 7 matches this months and she was so bummed she's been unable to find one for us....

Six months. Six months we've been with this group and somehow its our fault - that we're picky, that their database is limited, that we want more than a functional uterus - we want someone who would be a piece of our lives by the very virtue of the situation.

Again, we are the exception.

Tell me again when this became a bad thing?

Anonymous' comments are so apt. We are our best (and sometimes only) advocates. I will never forgive myself for not being MORE vocal the night we went into the hospital to ultimately deliver our daughters.

I love this and I think it is my new mantra. Thank you, anon, whomever you are:

"Voice your concerns. You're not being coddled, and you're not high maintenance. You're a woman with knowledge, an ability to think for herself, and as a result, you will not be a...victim."

michelle said...

I say screw being made feel like you're high maintenance or wimpy. You have to be your own advocate! BTW, the only place I can get an IV in these days because of not getting a port and instead using my arm veins is my neck. Last time they used a 16 gauge needle WITHOUT any sort of topical anesthesia. You better bet I'll be asking for some relief before they do that to me again!!!!

Dreams and False Alarms said...

Can you get a different nurse? Who needs a shaming nurse? No one, but ESPECIALLY not you! My IVF nurse was the absolute best fit for me and I know it made a huge difference to my well being.

Alexicographer said...

Oh good grief, with my exasperation being directed, obviously, not at you the patient but at the medical "care" providers who have "treated" you. I really can't add much to what's been said above except the following two thoughts: 1. Pre-IF, I was the picture of compliance. During-IF, I was (as most of us are) one of those patients with a medicine cabinet full of assorted half-used prescriptions and (as we may or may not become) the willingness to adapt my protocols as I saw fit. Dreadful, I know (and of course this wouldn't have worked in your situation of needing a refill), but at some point I realized it was easier just to ... fill in the blank ... than to argue with the powers that be (for the record, if that sounds dreadful and I know it does, what I was doing was stuff like not increasing my stim dose to 600 from 450 when I knew it wouldn't make any difference, isn't supported by the literature, and costs me money. Or adding low-dose prednisone to one protocol because of concerns about autoimmune issues that my doctor poo-poohed. Nothing nefarious!). Those who are jerks in the way they dismiss patient concerns would do well to think of how that affects compliance.

(An aside: my favorite nurse, when I was recovering in the hospital from surgery to repair a broken bone, was the one who commented that when he'd been similarly situated, he'd read the warning, "Alcohol may strengthen the effect of this [narcotic]" as a recommendation that he drink some beer, not a proscription of same.)

And, two, your post should be required reading for all patients. So many of us deal with this kind of bad behavior, and we shouldn't have to, and we should recognize it for (and call it) what it is -- as @sprogblogger does, above.

thirtiesgirl said...

I agree that the nurse should be smacked! Ridiculous. Glad you're dr is on your side.

Julize said...

I totally hear you on the Lupron Depot. I had to do 3 months of it before our last transfer and the hot flashes were ridiculously awful. I read about the add-back therapy but never had the guts to request it for all the reasons you mention. Endo just sucks, doesn't it? Hang in there. Fingers crossed that everything works out with your sister's eggs.

Kristen said...

I hate Lupron too. The emotional stuff that comes with it...ugh!
And I did multiple cycles at CCRM and the whole time felt like I was getting the best medical care possible, but also that the day-to-day interaction wasn't that great (I wish they'd been more attentive/supportive/held my hand more/heck, just called me with things like my beta results in a timely manner), so it's not just you...I totally hear you with that nurse...sucks that she worried you unnecessarily. You should absolutely do everything you can to make this experience more comfortable/bearable. You are going through enough!
Fingers crossed for everything working out with your sister...

What IF? said...

That nurse was completely out of line and utterly uninformed. She simply should know better, and should certainly learn to err on the side of silence if she's in doubt. (I have stage 4 endo, and appreciate you sharing your experience on the devil drug, and its effects.)

I'm so sorry for everything you and Will continue to go through, and I'm apalled at the treatment you've received from medical personnel who are expected to act with greater compassion. Thinking of you and Will, always, even when life interferes with my ability to leave a comment for you.

Dora said...

Oh, fuck! Seriously, FUCK! I hadn't read this before sending my email to you. Ugh, I have lots to say, but can't right now. I'm horrified by this. BTW, I used emla cream for my PIO shots. I don't think it did much, but at least I felt like I had something to make it easier.

What a fuckwit of a nurse. Sorry you had to deal with that crap on top of the lupron hell. xoxo

Groves said...

These mean people stink, Mo!

And bless you, Alyssa Ettinger, commenting above. I grew up around physicians, too, and I definitely have not forgotten this:

I dislocated my knee as a teenager, and although the joint snapped back in, I was in horrible pain and couldn't walk. It wasn't until a full year later...after I had been on crutches the whole time...that I was allowed to see an orthopedic surgeon about the possibility that something was actually WRONG.

And guess what? My kneecap was floating around, partially unattached in a sea of shredded cartilage. Yes. For a *year.*

Why? Why did it take so long? Because I was raised by a physician who had "seen it all" and was sure that I was just faking and enjoying the attention and there was "nothing wrong with me that a couple Tylenol couldn't solve."

I HOPE YOU SCREAM YOUR HEAD OFF AND MAKE THEM DO **ANYTHING** YOU CAN THAT MAKES YOUR LIFE EVEN ONE JOT EASIER.

Because I guarantee: If It Isn't Their Body, They Will Write You Off And Downplay Your Concerns Straight Into The Pit Of Hell.

Too strongly stated? I don't think so.

And if they dare call you "high maintenance" or even suggest that you are...!

Yes, I'm still mad,

Cathy in Missouri

Marcia (123 blog) said...

The nurse's comment makes me ill - some people just don't think, and that's if it was said in innocence. But still. Gosh, some empathy would be a good thing!

Her Royal Fabulousness said...

Hey - just wanted to let you know I gave you an award. :)

Guljar said...
This comment has been removed by a blog administrator.
Related Posts with Thumbnails

Popular Posts