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Lupron or Just Me?? Lupron or Just Me??

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  #1  
Unread 04-20-2004, 04:25 PM
Lupron or Just Me??

I received my 1st of 3 shots of lupron on Friday and started premarin. (My endo is acting up it always does around this time of the month for about 10 days so just in generall I am having to deal with that pain right now on my left side). I noticed that I seem to becoming nausaued about 3 to 5 times per day along with getting dizzy (the feeling like the room is spinning) as well as my breast feel really tender & my nipples are hurting.

I am assuming that this is related to either the lupron or premarin... Has anyone else experianced these sort of side effects? And if so how long do they last?

In generall I just don't feel like myself. My one of my mangers said I look like I have not slept in days today. Said she is conserned about my health. Did not go to work yesterday because of the endo pain. I had to force myself to get through the day today, wanted to leave so bad, but afraid to use up all my sick time. I did mention to the my GYN's NP when I saw here that I was having troubles at night sleeping because I just plain get comfoteble and she told me to wait & see if the lupron helps before they would prescribe something. It seems like I have trouble getting comfterble in bed all the time not just when my endo is bad. I tried to explain to my boss the process I have to take before they can go a head and remove my ovaries & the endo. I just don't think she understands. When I told her that I thought the lupron was making me sick she asked if they could adjust the dose. I don't think she understands that this is not something that can be easly fixed and my other manager has no clue, she just came back from maternity leave.

So far DH has been very helpful... Did all the driving this weekend even took me to the store yesterday to get a few things for dinner. He keeps telling me to rest that he knows I am not feeling well.
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  #2  
Unread 04-20-2004, 05:39 PM
Lupron or Just Me??

Dear ((Sweety))

I was working for a big company when I took Lupron... I definately remember it making my pain much worse initially such that I had to go home a few times.... My manager didn't have a clue about endo or Lupron (a male) but when I told him I was being given injections of a drug in the same classification as chemo-therapy drugs (which I did read ... maybe that is because it is used for cancer in men) he was very understanding.

I remember feeling quite different while on the drug despite having add-back... I ended up taking a medical leave from my job the last month I was on the drug because I just could not cope emotionally anymore.... After I was off the drug for about a month it was like the sun came out again... so I think I had become quite depressed and moody but only recognized how bad I had been feeling after the fact. I did read at that time that a high percentage of women who took the drug for 6 months ended up taking medical leaves, quitting, or loosing their jobs... whoa!!

Hopefully it is not so bad if you only take it for 3 months.



Sarah
  #3  
Unread 04-21-2004, 04:54 AM
Lupron or Just Me??

Sarah,

Thank you for the reply... I know that this is a serous drug, but like DH says I have a serous issue. It's so hard for me to call in or tell my mangers I am leaving because I don't feel well. I also work for a very big company and they have a strick policy when personal time & sick time are used up they have been know to terminate the person. I have also seen them make exceptions, but normally when a person has a very sick child. I know I still have 3 sick days left & 5 vaccation days (that aren't planned but one does not know what the future holds or what we will run into with the adoption).

I can deffently feel the changes taking place in my body. I also noticed I stapped at DH last night because I could not find something. I appologized as soon as I realized what I did and he was understanding. Hopefully being on this medication for 3 months will not be enough for me to loose my mind and enough time for the doctors to determine if the pain is truely endo pain and ovarian pain.

Kim
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  #4  
Unread 04-21-2004, 06:10 AM
I too took lupron

Dear ( sweety)))))
I too took lupron several times and with each treatment the side effect became worse. That was one of the reasons for my TAH. I am sorry you are having such a terrible time on it. I know for some women they can handle it with no side effects I was praying for you that was the case. All I can tell you is to be strong and lean on your hubby and dear freinds. I am afraid that the effects will have to run their course adn I would think long and hard before continuing the therapy. After my last dose my sister and I had huge fight causing us to not speak for nine months due to my mood swings, I temporarily lost my mind blew up at her and said things that I don't even remember saying from one Lupron patient to another you can understand but for her she couldn't and it hurt her very badly.

After she began working at the Mayo clinic for terminally ill cancer patients and began seeing Lupron work she called me and was so concerned and offered support and understandin. That was a major dediding factor. Lupron works great for some women but some of us are just not cut out for the stong effects that it has on our bodies even with the add in therapies.

Please talk to you dr and have you husband involved. I began keeping a journal. Writing down every mood swing, every hot flash , every pain, ever sleepless night, everything. Let the dr see how much this is disrupting your life. Sometimes they don't realize that there therapy is not therapy it is a life sentence.


Please take care and rest your body needs it...
LOL
Jeni
  #5  
Unread 04-21-2004, 07:34 AM
Lupron or Just Me??

Hi Sweety Tweety

I'm on Lupron and Prempro (the sister drug of Premarin) the dizziness and nauseaus (sp) you mention is probably from the premarin it is a side of the HRT. I had it and it took my body a little to get use to it. Maybe your doctor can switch HRT to Agyestin. I used that also, although that didn't get rid of the pricker bush feeling below I got nor the hot flashes. But each person's sides effects are different and one may be better for you.
The Lupron did work for me for about 8 months before the endo started coming back, thats why I'm having a TAH BSO. Weight gain is probably inevitable on the Lupron with HRT but eat right, exercise and that's all you can do. Take calcium supplements to help also. The breast tenderness is the HRT most likely too. They might grow too and sometimes feel tender but not always. The side effects you mentioned I have dealt with. The dizziness I think is the Premarin, can they lower your dose? the breast tenderness might come and go and they might grow but hey the way I looked at was if I'm gonna gain weight in my stomach I might as well have bigger boobs to even it out some! The moodiness goes up and down like a roller coaster, good days and bads. I use to sing in the car all the time, now not so much the meds just can make you feel blah! BUt with a great support team behind you and exercise can help lift your spirits.

Feel free to PM me anytime and vent, etc. as I've deal with all this and am very familar with it and still dealing with it myself. In fact I go for my next shot on Monday (It's my last one before surgery!!!!!)

Take care,
  #6  
Unread 04-22-2004, 07:36 PM
Lupron or Just Me??

Jeni & Abbie,

Thank you both for your responces. Today was better then yesterday. Yesterday I felt just awful, both of my ovaries hurt so bad I could of swear I was having menstral cramps. Even DH told me to come home from work when I called him durring my lunch for some insperation to make it through the day. I made it, when I came home I went straight for my pain pills & the bed did not move until 6 am this morning.

The nausaus & dizzy feeling seems to be better today. My breast are still very tender. My pain is mainly on my left side today. Felt pretty good when I got up but by 8:30 an hour after being at work the pain was back and has continued on & off all day. I have tried to take DH's advise & not getting up at work as much, but it's hard w/my job and sometimes I think sitting makes it worse.

When I saw the NP on friday she was great. We talked for 30 mins and she also recommened that I keep some sort of pain diary. I had been keeping track of the days that I have pain since Jan. She asked me to try to be detailed and more discriptive of the pain & how it affects me. Said this information may be needed for insurance & can help them. So I am trying to keep more info. What kind of things should on list about the pain? I plan on taking my diary in with me when I go for the next shot on may 17th. I want them to have all the info needed on trying to find the best treatment for me.

One other question about lupron... Does it affect your thought process? In my job I have to go over information with applicants about a training program and I have caught myself the last 2 days loosing my thought and saying informaiton wrong or over again. Not like me.

Kim
  #7  
Unread 04-23-2004, 05:56 AM
I found that it did

Just like with pregnancy I found that I had trouble with memory while on Lupron unfortunatly I swear mine never came back. As my mom and I say we suffer from CRS disease. I have note pads all over my house and a huge dry erase calendar that has all appts, baseball practices, games, et. But you should discuss it with you dr.
Please take it easy I know how painful what you are going through can be. The weekend is coming up Pamper yourself. Try some Ben and Jerry's "All that and the" that is the name kid you not is is to die for very rich but so good. Grab you comfy blanky and heating pad, put in a chick flick, like Top Gun what could make you feel better than Tom Cruise and all those guys on the beach playing volleyball or hey just in that uniform... Kick back and do nothing....

LOL
Jeni
  #8  
Unread 04-23-2004, 06:56 AM
Lupron or Just Me??

Sweety Tweety

I beleive the Lupron does effect your memory. I use to have such a great memory people even commented on how well my memory was.

Now, post it notes are everywhere! I'll walk into the kitchen to boil water, half hour later the waters boiled over the pot and I completely forget that I was boiling water in the first place. Or I'll go to light a candle and later on I'll sit down and swear I lit that candle and never did. My DH and I have to laugh about it, one time I was getting up off the couch into the kitchen and he asked for a beer, I said no problem, came back less than 2 minutes later with no beer, and he says where's my beer? I completely forget about as soon as I walked into the kitchen I guess. My memory for work is bad too, I walk around with pen and paper all day to write down stuff I'm told to do during the day so I don't forget.

Hopefully its only temporary. I take my last shot of Lupron Monday then come July it will start wearing off and I'll be done with that stuff and will have had my TAH by then. Hopefully TAH's don't effect your memory.

Take care of yourself,
  #9  
Unread 04-23-2004, 07:34 AM
Lupron or Just Me??

I too thought the Lupron affected my memory and thinking.... I don't know if it was the drug directly or the lower estrogen levels. I have read the estrogen helps your brain.

While mine did get better after I stopped the drug I don't think it ever got back to where it was before I took the drug.

If you recall the I ended up taking a medical leave from work while on Lupron... the memory problems were part of it. Mostly it was the emotional espects but some was just not being able to think as well as I used to.



Sarah
  #10  
Unread 04-28-2004, 08:58 PM
Lupron or Just Me??

Just wanted to up date you all on how I am doing after almost 2 weeks of being on lupron. I did rest quit a bit last weekend. My pain seemed to let up about 2 days ago, which is pretty much standard as I have been keeping track of the pain. I am hoping that next month my pain will be less. The dizzyness seems to come & go, but overall it is better also. Seems to hit late in the day. Wounder if it has to do anything with the fact that I don't take the premarin until before bed?. The brain fog, well I fear I maybe stuck with that for a while. I keep finding my self repeating certian parts of my speak when going over training with applicants calling the company I work for. I think some of them think I am crazzy. One of my mangers is sitting in w/ me next friday to see how well I do on the phones I fear she is going to say something about me repeating myself. I have also noticed some mild joint pain or aches but nothing I can't deal with. DH noted tonight that I seem to be retaining fluid, nothing to bad though.

I want to thank you all for suggesting the pain diary and keeping track of the symptoms that I experiance. I have also noticed by doing this my bladder pain seems to be the worce & spasm more durring that time frame. Endo grow on the bladder? DH said that my bladder was stuck to my uterus durring my LAVH. I plan on taking that information in with me when I see the NP on may 17 th for my next shot. I will be getting the shot about 4 days prior to my bad time of the month so hopefull we should see if it helps with the pain. I hope it does because we have to travel around that time for a wedding and I will be sitting in a car 4 to 4 1/2 hours one way! I already told dh he may need to take a few stops for his wife to streach.

Kim
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