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» LymeNet Flash » Questions and Discussion » Medical Questions » Lupron? Surgery? Tough it Out?

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Author Topic: Lupron? Surgery? Tough it Out?
BKM
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I've read several things saying Lupron is very bad. Can you be more specific.

I'm having some issues that will require some sort of surgery. Trying to determine what course of action - dr. is trying Lupron to determine effect on my LD (been in treatment for 2 years). As dr. says, he can't put it back once it's out.

LD is MUCH worse during my cycle.

From my reading some Lymies say do the surgery, some say don't. Seems to be strong feelings both ways.

Would appreciate input.


Posts: 11 | From Houston, TX, USA | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
snowboarder
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I wouldn't touch Lupron with a ten foot pole...bad bad stuff.

I'm 42 and found out 16 months ago I have osteoporosis of the lumbar and cervcical spine and ostepenia in the hip.

This obviously is not good and remember my name is snow boarder because I used to ski and snowboard since I was 8.

There's a class action suit againist Lupron as we speak. I personally wouldn't do it.


Posts: 738 | From Colorado | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Sus
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Here are some specifics about my personal experience with Lupron:

In the short-term (i.e. while on the drug): intense nausea, dizziness, lightheadedness, blurred vision, double vision, hair loss, melasma (dark spots on face), extreme fatigue, fibromyalgia-like symptoms (muscle pain, for me), joint pain, intense pain in legs, and the list goes on.

I stayed on Lupron for 8 mos (with a 2 month break in the middle), but wish I had not. You can find the patient insert for Lupron online somewhere, and it lists all of these side effects and more.

Some people feel they have had had permanent neurological damage due to Lupron, and some feel that it contributes to developing fms/ms and other conditions later. Given the similarities/connection between these conditions and lyme disease - seems like it could potentially worsen your lyme symptoms?

Surgery, on the other hand, comes with its own pros and cons. Weigh the differences, and pick the best choice for you, obviously.

When I opted for Lupron, it was only after multiple surgeries and many other treatments, as a last resort before a hyst. I felt I needed to have tried everything before the hyst - so I did. Now, I wish I had avoided Lupron like the plague, and if I could do it over again, I would. Just my personal experience/thoughts on this.

Good luck!


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Sus
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Oops - forgot to say that Lupron gave me very little in the way of symptom relief.

And immediately after going off of it, my symptoms returned with a vengeance - actually intensified. I opted for one more surgery, and then had a hyst within 5 months of going off Lupron. So the payoff for the side effects was basically nil.


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pippy
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I tried Lupron for fibroid tumor in uterus. There are other good treatments that do not require hist. Lupron is AWFUL and the others are right...don't let ob/gyn talk you into it...it is not as necessary as they seem to think it is. It is temorary at best and does a number on your body.

If you are using it for fertility tx short-term it may be worth it (having a child would be worth it very short term) but please consider all the options. sometimes they want you to take it before they do fibroid surgery to shrink the fibroid...now that is not necessary with the new techniques they have...
get a second, third, fourth opinon (sometime female ob/gyns are more understanding of this) if necessary!!


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janet thomas
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Get some more opinions. Especially female ob/gyn. Surely there is an alternative between lupron and a hyst. Aren't there procedures to surgically remove the fibroids but leave you intact? My girlfriend had that done. When I went thru a natural menopause my Lyme symptoms exploded.
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pippy
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Sorry, I forgot to mention...LD is a lot worse for many of us around our menses. That is due to the drop in progesterone and hormone changes.

look up the thread talking about natural hormone replacement/balancing. It could be that your hormones are out of whack and you may do better with natural hormone replacement. I use a RX progesterone cream which has helped dramatically w/ menses flare up of symptoms...

You may not need lupron to supress excess estrogen (estrogen dominance)....get another opinion before having anyone give you these drugs or a histerectomy!

Good luck...let us know how you are doing and what you decide! This is tough


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janet thomas
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Both estrogen and progesterone drop at the time of menstruation not only progesterone. I have read it is the precipitous drop in estrogen that allows LD to flare. Messing with your sex hormones may cause even more problems. Just my two cents.
Posts: 2001 | From NJ | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
burnbitter
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quote:
Originally posted by janet thomas:
Get some more opinions. Especially female ob/gyn. Surely there is an alternative between lupron and a hyst. Aren't there procedures to surgically remove the fibroids but leave you intact? My girlfriend had that done. When I went thru a natural menopause my Lyme symptoms exploded.

First I would say while surgery sucked, it wasn't all that bad, and I got a relief from pain for a couple years after each of them. I'm not sure exactly what's wrong for you or what your considerations are...but there are alternatives.
The doctor I'm seeing is an OB/GYN, she's treating lyme now but previously she started treating me for endo.
She is one of the top doctors in the country for pelvic pain and fertility. Also she has tested equivocal for Lyme...so she gets it. http://www.harmonywomenshealth.com

my endo page talks about my surgeries, usually they gave me relief for a couple years... http://www.trollop.com/people/raven/endo/ it's all from before I knew I had lyme though so if I'd known about the lyme, things might have gone better. Stupid tests from Quest.

But she's a great surgeon and can give you all the alternatives to surgery. There's several other top doctors here in the states and I highly recommend a specialist. Anyone recommending Lupron...well I wouldn't want them doing surgery if they think Lupron would help...
I wouldn't say Lupron is a treatment, the side effects are worse than what you already have!


Posts: 207 | From san francisco, ca | Registered: Mar 2005  |  IP: Logged | Report this post to a Moderator
trails
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Up b/c today I learned that my endometriosis is not being kept in check my the pill. I have horrible pain at times and keep producing and then rupturing (OUUUCCCCHHHHH!) hemoragic cysts. I also have fibroids.

GYN who performed laparoscpoy said she'd like to do another one and possibly remove the entire right ovary coz it just keeps being a ding bat.

I will NOT consider lupron.

GYN said she didnt want to do lap due to Lyme and anasthesia causing relapse.

What is a person to do when they must have surgery but also have lyme????

I have been researching the old posts about surgery and lyme and may post my own topic, but trying to be concise.

Any suggestions, endo stories, tear wipings would be appreciated.
Trails


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luvmycat
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Hi. I did the Lupron for 6 months prior to hysterectomy. I had no side effects at all except for some hot flashes. I had stage IV endometriosis. My total hysterectomy was a 4.5 hour surgery and done as an outpatient. By 6:00 that evening, I was home sitting in my easy-chair eating chicken rice soup!
The Lupron settled the endo down enough that it was easier for the surgeon remove.

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Skyler
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Anyone else have any opinions on this?

I have the shots sitting in my living room. I am to give myself a shot every day, so if the side effects are bad, I can just stop it.

I do not start it for 5 days... so I have some time to back out... i guesss?

I paid a lot for this, and I have no other options. I am 22, want to have kids, had the surgery, need method to prevent this from coming back, and have terrible reactions birth control.

I am very scared now.

--------------------
I'm probably sleeping...

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Parisa
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Have any of you tried a gluten free diet? It seems to me I had seen some discussion on the celiac boards about celiac and endometriosis and fertility issues. I'm not sure that gluten free fixes everything but it's worth a try if you haven't.
Posts: 984 | From San Diego | Registered: Nov 2006  |  IP: Logged | Report this post to a Moderator
   

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