Saturday, July 3, 2010

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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20 comments:

Sue said...

Don't fear the Lupron Depot. I have taken it 3 times - some clinics use it instead of regular lupron. Only once did I have any side effects, and they were mild - mostly headache and a few night sweats. My situation was a bit different though, because within aobut 10 - 20 days after taking it I was on estrogen.

Oh, one more potential side effect is dry skin - so moisturize, moisturize, moisturize!

I am guessing you meant you are on 3.75mg, I don't think they make a 37.5 (but I could be wrong).

Wishing you no symptoms at all!

K said...

Ah, Mo. I hated it, and I don't really want to tell you how much so because you are on it now. :/

Bad headaches, hot flashes, depression, mood swings, night sweats. It was 8 years ago, so I don't remember details. I didn't get any add-back therapy, though, I do know that.

I had it right after my first surgery, and while I did not like being on it for 6 months, I do think it helped b/c I had very minimal problems for quite some time. I freaked out a bit at the first IVF when I knew I was going to have to take it again, but it was MUCH easier in the small dose than when I was on the depot.

I'm going to hope it's a walk in the park for you, lady. Everything is crossed so that that hope may come true.

K said...

And I second the dryness. Even on the IVF dose, I had to get a humidifier b/c I was just so dry. At first, I thought it was the steam heat in our new apt, as you know how NYC apt buildings blast the heat. I'd go straight for some Eucerin Aquaphor if you get the dry skin. We tell the patients on HCV treatment about it, and it's about the only thing that helps them.

lastchanceivf said...

I had a few hot flashes, but also took it during the hot summer that is Austin, TX.

But I still exercised regularly per usual and I don't really remember anything major regarding mood--but I did get headaches.

I think, like all of this stuff, everything is so personal. Every human body responds to meds differently so here's hoping you won't get too many side effects.

I did the same dosage as you did, but unfortunately I did it before a fresh cycle and I think it crapped that cycle. I didn't re-do it before our only cycle that ever had any semblance of implantation but I did do endometrial biopsies which can have a similar effect in helping the implantation proteins express better. So who the heck knows!

Pie said...

Mo, I think you know some of my DL story, as I took it just as you are doing (3.75 for 2 months) just a few months back. I took it not due to endo, but because I was lacking the beta integrin in my lining (failed the e-tegrity test). And yes, it is one crazy needle!

Side effects: Hot flashes. They began about 2-3 weeks in, at night first. Then they became several times a day and at night. Disrupted my sleep. I did not have headaches, mood changes, decreased energy - other than I was tired from lack of sleep. And maybe a little cranky too. I continued to work out regularly (cardio, weights, yoga) while on it. I think even with working out 4+ times per week, I did gain a little weight.

I did not notice any of the side effects getting worse with the second dose, just more of the same. And the hot flashes stopped quickly with FET prep and those lovely estrogen patches. Stopped within 3 days of putting a patch on.

I had no spotting or period while on DL. So for me, I had a period right after doing a stim cycle, started DL on Day 3 or 4, then took dose 2 30-ish days later. Then began FET prep about 30-ish days after that - no period or spotting at all. And my lining for FET was good, 10.5mm, triple stripe. I also did acu during the FET prep, even though it was not required by CCRM. So if you do DL right into FET prep like me, and get a BFP, you could not have a period for almost a year. Weird!

And doing this was VERY worth it for me, as I got my first ever BFP after taking the DL. I also had a confirmed euploid blast transferred, but I completely think the reason I couldn't get pregnant was the beta integrin issue. they don't re-test you for the beta integrin after DL treatment, but the BFP was enough confirmation for me!
Honestly, while DL sucked, and I hated hot flashes, it wasn't the worst thing I've been on/had done to me during this IF process. And given my good results after taking it, I'd happily do it again. Well, maybe not happily, but you get my point. :)

Auntie Em said...

Thank you for gathering this feedback! I think it will be helpful for others like me who will be on DL in the future! I hope the side effects are mild for you!

Expectant Duck said...

Hi Mo,
So I've got a whole pile of lupron experience, I've taking it for 2 years of my life, once when I was 18-19 and once the year between ivf cycles.

So my assvice is to keep up that exercise, it made a world of difference for me, less side effects (didn't get all unhappy/weight gain/hot flashes) when I exercised. And I knew that it would make me a little nutty so I told my husband to let me kn ow the moment I started acting hormonal, and he was allowed to state "your acting hormonal" then I just stopped what ever rant I was on and took some time away to cool down. It helped. The only real side effect was I was less smart aka stoopid at times.

Results - well my endo shrunk after several months of lupron, we didn't transfer so I've got no feedback on that aspect.

R. said...

I've never taken it, but wanted to wish you good luck and avoided the side effects. Thinking of you.

ks said...

I had no problems with the Lupron Depot shot. I had no side effects at all. I felt totally fine and normal until the estrace was introduced... Then I was a weepy emotional bag of turd! LOL! The Lurpon depot actually supressed me for almost 3 months. I don't have endo, but I get gigantic cysts and I had no cysts for 3 months! Wonderful! Good Luck I hope you are like me and feel good on it!

musicmakermomma said...

Sending you good wishes for few side effects Mo! I was on depot Lupron in years ago, and it was pretty horrid with side effects - night sweats, headaches, achiness. I was on for 3 months - don't remember the dose. I didn't have to give myself the shots, went in once a month. They told me it would emulate menopause, this was way before I was TTC, but it may have helped since I did end up conceiveing our fabulous boy about 9 months after I finished (we got married about 7 months after) - that may have been too much time after who knows. Best of luck, thinking of you.

Sonja said...

I'm over here from LFCA :)

I did 2 rounds of lupron for my endo. The side effects that I had were mood swings (usually not too bad, I remember 2 bad outbursts but even those weren't horrible) and hot flashes (those were the worst; sleep with an extra shirt by your side so you can change without getting out of bed if you have night sweats).

I didn't have any bleeding whatsoever on it, and my pain was basically gone while on it, but it came right back after the shot wore off.

If you would like to talk more/ask more questions, feel free to contact me! Best of luck endo sister *hugs*

bunny said...

OOO, I saw your post title in someone's sidebar and wanted to stop by to share. I took the same dose for the same time period before surgery to remove fibroids. My first month was fairly symptom free until maybe the last week, and then came the hot flashes. And month two was non-stop hot flashes. But not so much with the other symptoms. I did have a period in the middle, though I don't know if I ovulated for sure. I hope it's not too bad for you, and that it does wonders for your endo. Best of luck!

Anonymous said...

Hey Mo!
A little backgroud...I have done 4 fresh IVF cycles and a couple of FET's (still no baby) so I have had my share of drugs. I would say that nothing compares to lupron depot. I did it for two months as well along with LIT therapy in Mexico as a "hail mary" IVF a little over a year ago. It was worst thing-hot flashes, depression, mood-swings, and I actually lost weight on the drug along with my boobs! The worst part is, they never came back!

nurslouisa said...

Hi-
I took Lupron Depo for 6 months for endo, can't remember the dose, but had some hot flashes, slight fatigue and a little wt gain. Can't say it helped the endo symptoms they came back after stoping it and I went on BCP which were more tolerable and did the same thing (according to my MD). Best of luck to you!

Silver said...

I haven't had the joy of this particular treatment, but wanted to wish you all the best and say that I hope the worst of any side-effects pass you by.

strongwoman said...

I did 6 months of Depot Lupron last summer to treat my endometriosis and adenomyosis. Unfortunately, it didn't really work. However, I didn't experience most of the nasty side effects that you read about. My doctor had me supplement with Norethindrone, which I think kept the worst symptoms away. I do remember some fairly significant side effects, but otherwise nothing too remarkable. I was plagued by some unexplained health problems all summer long, but those continued in more muted form after I stopped taking Lupron, so I believe they were unrealted. best of luck to you!

strongwoman said...

Meant to say fairly significant HEADACHES, not side effects!

Also, I had two periods while I was on Lupron, which I found odd since it's supposed to induce a menopausal state. Just giving you a heads-up.

MyLifeMyWorld said...

I think everyone is different when on the Lupron...some have wicked mood swings while others have little effects.

For me I did have some mood swings, but not much more than the usual PMS stuff...overall I just felt irriated at everything.

Vaginal dryness is another one...so if your in the mood have lube on hand.

Bloating sometimes can happen too...I always felt bloated from the Lupron.

Lupron headaches are the worst side effect really. Some get them really bad, and some they never go away. For me I had a few bad ones but they did go away.

The good news is, once you start the estrace the Lupron side effects do go away...so keep up the faith that this is only temporary.

Hugs

MyLifeMyWorld said...

Oh Yeah, and I forgot to mention the hot flashes. THEY SUCK! Just so you know.

Also your question about bleeding, some do have a full period about a week after starting it...some don't.

you won't know exactly how you'll do until your on it..hopefully your side effects will be minimal.

Anonymous said...

So after reading many many posts I Noticed that few, if any posts were written from the male perspective/husband perspective. Before you laugh, let me say that this isn't a joke, nor is it meant to be satirical. My wife just took her third and final shot of the 3-shot treatment for endo, and by far, the worst of the side effects we have experienced has been the mood changes/swings. We have a strong marriage and have come close to calling it quits during the course of the treatment. I thought she had mood changes before, but since she's been on the 3.75 mg shots, and taking norethendrone as well to attempt to counteract the hot flashes, I've come to the point where oftentimes, I don't even want to be around her anymore because regardless of what I say to her, it's going to lead to an argument. After nine weeks, I'd rather preserve the marriage and give up spending time with her than fight constantly. I AM EXHAUSTED EMOTIONALLY.

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