May 10, 2013
Here are more Lupron updates for anyone
that may be following along on this lovely, cracked out adventure.
Previous Lupron Depot Cracked Out Adventure Posts
At the four week mark (end of shot #1), I had an appointment with my doctor to determine my Lupron progress, if any. I walked into the office with a whole speech in my head about why I was apprehensive of shot #2. Once my doctor got in the room, I spoke up about my concerns and told him about my sudden nosedive from a fairly normal, stable person to an anxious troll who needed to go hyperventilate in the corner on a regular basis. He told me it was fairly normal to feel this way on Lupron. Huh? He said it so casually like, “Eh, mental breakdown? No biggie.”
This bothered me because he never mentioned major psychological changes or an increase in anxiety as side effects prior to starting the Lupron. I was told I would have some hot flashes and feel moody. But, I was experiencing a lot more than a few sweaty hormonal moments.
After discussing it further, we came to the conclusion that while Lupron can increase anxiety levels, I was feeling off the charts anxious most likely because I already had an existing anxiety problem. He told me I could go back on Paxil for awhile if it would help. Also, at my request, he gave me the name of a psychologist who specializes in infertility. After we talked, I felt a decent amount of relief that what I was experiencing wasn’t too far outside the norm of what Lupron does to you.
Then came time for the ultrasound.
From the looks of it, the Lupron helped in terms of quieting the endo down. Thank goodness! So basically with shot #1, the endo got a little drowsy. However, my doctor wanted the endo to be in full-on napping mode. He could still see some endo activity, so he ordered shot #2.
I had about three seconds to make a decision. I could stay an anxious troll for the next four weeks and put the endo to sleep; or put an end to this Lupron madness, but risk an endo flare that could compromise IVF 2.0. I decided to bend over and take shot #2 like a good girl. (That last sentence just sounds wrong.)
Weeks Three and Four: I wrote this note on my phone, “Week 3, Day 4 – throbbing headache, bad sleep, sluggish, anxious” I think that short note sums up my third week on Lupron. My last Lupron update also speaks to exactly how I felt during this time. I was paralyzed for two weeks. My anxiety made me so exhausted, but my brain wouldn’t stop spinning. Between the insomnia and the night sweats, I wasn’t getting much sleep. I could barely manage my routine schedule of work, home, eat, sleep, repeat. I lost my appetite (likely due to anxiety) and lost about five to eight pounds. Everything I read said I would gain weight. I am not saying this in a bragging way. I didn’t look nor feel healthy. To sum it up, weeks three and four were bad. Very bad.
Weeks Five and Six: Week five was the week following shot #2. Strangely, I felt better during week five. My anxiety went away! Such a relief. My hot flashes and night sweats remained about the same, but as long as my anxiety was under control, I was fine. I also got my appetite back. L and I even went out of town. That was huge given that I had spent the last two weekends basically in bed due to exhaustion and mind altering anxiety. Week six ushered in anxiety (again). Shit. I guess my time to feel normal was short lived. The hot flashes and night sweats increased tenfold. I have been waking up at least a few times a night burning up. I have to lay on the floor with my pillow in front of an open bedroom window to get some relief. Week six is on its way out, and I continue to feel exhausted, anxious, and a little crampy.
Medication: I am taking a low dose of klonopin when I need it. This was approved by my doctor.
Additional Notes: I imagine my uterus and ovaries in this epic battle with the Lupron. My body just wants to be active and grow endo all over the place, but the mighty Lupron is swooping in and shutting it all down. Running these images over and over in my head is not only mildly entertaining, but also helps me feel a little better when I want to just break down. I am also grateful that I will not be on Lupron during the summer months. It is already getting pretty warm here in L.A., and I honestly do not think I could handle 90 to 100 degree summer heat with hot flashes.
I have two more weeks with the Lupron Depot treatment, and then we will talk more about IVF 2.0.
Colleen
Ugh. This sounds miserable! So good of you to write our your experience so others can read it if they are going through it and know they aren't alone! How long do they hope that this "puts the endo to sleep" for? Is it just a short window? Do people with Endo have it for life? Goodness I hope not for your sake. Be well Carly 🙂
-J.Darling
Hang in there chika! It's a tough road you've choosen, but see it through! You can do it! I am SO happy to hear that you REALLY spoke up for yourself when you felt you weren't getting adequate attention to your problem! It's so vital that patient's be their own advocates! Sounds like it was pretty successful too and got you some help. 🙂
thelessthandomesticgoddess
@Colleen: Thanks so much, C. The doctor is hoping the endo stays asleep through my IVF cycle. Basically, endo = inflammation and it can negatively affect just about every aspect of IVF, as well as egg quality. It differs for everyone in terms of how long before the endo grows back after Lupron Depot. Some women are in remission for weeks, months or years. But, from what I have read, it is usually a short window of time. 🙁 It also depends on how long you are on Lupron. I am doing a two month treatment. Lupron is such a strong drug that you are only supposed to take it up to six months over the course of your entire life. In terms of your other question, women who have endo usually have it for life. However, after menopause, symptoms of endo typically lessen or go away. So…relief at 50? Lol.
Anonymous
I am a bit confused about how you could see your endo on an ultrasound I was under the impression that you could only see endo during a laparoscopy
thelessthandomesticgoddess
@Anonymous: While a lap is still the only way to diagnose endometriosis, my doctor was able to get an idea of my endometriosis activity by measuring the size of my endometriomas and observing their vascularity. From there, he was able to infer whether the Lupron Depot was actually helping or not. So while he can't physically "see" the endo, the ultrasound machine he has gives him a general idea of whether the treatment is working or not. I hope that answers your question!
Annette
Thank you for posting your experience with Lupron. I am to start Lupron injections in January and feel anxious about it. There is so much negative information out there, and although your account is not a walk in the park either, it helped me feel a bit better about this treatment. I hope all worked out for you xx
Ann Anstine
Dear Carly,
I am on week 4 of the first round of the 3 month injection. All I can say is, you have definitely hit the nail on the head as far as side effects. I have always had anxiety but very mild for the past 10 years and cut my celexa down to just 40mg. Well after the shot, I became a completely different person. I now have debilitating anxiety and panic attacks. I went from being mild mannered to a lunatic with road rage. I can't sleep more than a few hours at a time and I have to get up sometimnd es 2x a night to change my pjs because of horrific night sweats. Oh and my hair is starting to fall out probably because of all the stress. It hasnt helped endo pain and cramping in the slightest. I now have pain in my joints and hips which I've never experienced before. So I sympathize with everything that you are going through. I would say to all women who are given this option as treatment, need to listen to your gut instincts and run out of the doctors office before you let them talk you into doing it. I wish to God I would have listened to my innermost voice telling me it's a bad idea. I have another 2 mths to go and even then sometimes it takes months for the medicine to get out of your system. Some side effects may or may not go away. If you feel you must give it a go then please opt for the one month injections. After a month you can if it's helping or not before you go ahead with more shots in the future. I hope this helps any women out there! Do your research. This medicine is very powerful and it causes damage you have no way of knowing until you experience it for yourself!
Ann Anstine
Dear Carly,
I am on week 4 of the first round of the 3 month injection. All I can say is, you have definitely hit the nail on the head as far as side effects. I have always had anxiety but very mild for the past 10 years and cut my celexa down to just 40mg. Well after the shot, I became a completely different person. I now have debilitating anxiety and panic attacks. I went from being mild mannered to a lunatic with road rage. I can't sleep more than a few hours at a time and I have to get up sometimnd es 2x a night to change my pjs because of horrific night sweats. Oh and my hair is starting to fall out probably because of all the stress. It hasnt helped endo pain and cramping in the slightest. I now have pain in my joints and hips which I've never experienced before. So I sympathize with everything that you are going through. I would say to all women who are given this option as treatment, need to listen to your gut instincts and run out of the doctors office before you let them talk you into doing it. I wish to God I would have listened to my innermost voice telling me it's a bad idea. I have another 2 mths to go and even then sometimes it takes months for the medicine to get out of your system. Some side effects may or may not go away. If you feel you must give it a go then please opt for the one month injections. After a month you can if it's helping or not before you go ahead with more shots in the future. I hope this helps any women out there! Do your research. This medicine is very powerful and it causes damage you have no way of knowing until you experience it for yourself!
Stacy
Hi Carly! Thanks for sharing! Did things get better once you were off the lupron? Especially the anxiety?if so, how long did it take. Seems I’ve read it can take people months after stopping to lose their side effects. Would love to hear how things turned out for you! Thank you!