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Fear of Lupron ? - 1/21/2014 6:02:29 PM

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What do you do if your Dr. wants to "re-try" a treatment you've had in the past that had negative results ?

As a follow up treatment after my surgery on the 7th, my Dr. wants me to consider Lupron.
Lupron is a standard method by which to treat endometriosis and other hormonal maladies.

However, i was on it before after my first surgery at age 16. The side effects from the treatment
were just as bad as the endo' it was meant to treat. Researching it online has only proven to frighten
me even more about this drug.

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RE: Fear of Lupron ? - 1/21/2014 6:09:32 PM

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You were young then and your body was still going through changes. He could feel that your body has changed and it might work this time with less side affects. Maybe try it and if it really is affecting you negatively, go back and talk to your dr about another change?

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RE: Fear of Lupron ? - 1/21/2014 6:17:32 PM

DominantWoman65

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I would discuss my concerns with said doctor and see if there were other options available and then get a second and third opinion.

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RE: Fear of Lupron ? - 1/21/2014 6:27:26 PM

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You've got nice insight, Little Wonder. In fact, i did wonder if age would effect the treatment.
It's about the only "pro" reason I've found in favour of the Dr.'s suggestion.

The max time for this treatment method would be 6 months.
Would a Dr. be mad at me for not continuing through if i can't bare the side effects of the drug ?

One of the harder side effects were the mood swings. i might cry for hours over nothing or fall into panic attacks.
i was not a functional human.

Should i go on something like Xanax to treat a "side effect" ? Doesn't that sound strange and/or excessive to take
one drug so you can endure through another drug ?

It's just scary to me. Still, in theory, 6 months of Lupron could reduce the advancement and pain of endo' for
possibly 2-5 years.

i think i am willing to try it again, i'm just afraid.

Edited for typo-

< Message edited by FelineFae -- 1/21/2014 6:37:47 PM >

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RE: Fear of Lupron ? - 1/21/2014 6:35:41 PM

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~Fast Reply~

Several years ago I was prescribed Cymbalta for depression and fibromyalgia. It caused hallucinations and of course, I stopped using it.

Several months ago, an APN suggested I try Cymbalta again as it "may" not have the same result. She suggested starting ata very low (non-therapeutic) dose, slowly increasing to see how I handled it. My response was that with so many other options available, the idea of spending months taking something below therapeutic levels so she could experiment was stupid and I immediately stopped using her for my therapy meds.

I assume you have told your doctor about your previous experiences. If you haven't, do so immediately. On your own research alternative medications and then talk to your doctor about them. I'm sure there are other meds avaialbe that you may not have any reaction to. In my experience, when there are other, untried possibilites, there is no reason to put a patient through the unnecssary side effects.

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RE: Fear of Lupron ? - 1/21/2014 6:36:16 PM

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I would ask your doctor what his protocol will be if you can not tolerate it this time.
I would also ask him what his plan B would be.

And then I would decide.

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RE: Fear of Lupron ? - 1/21/2014 6:36:18 PM

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i have severe social anxiety. How do Dr.s react if a patient gets other opinions ?

This particular Dr. is not a specialist for my condition,
would he be insulted if i sought one out before making my final choice ?

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RE: Fear of Lupron ? - 1/21/2014 6:37:53 PM

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I'm not a doctor so I can't answer those questions for you. I can just go on my own experiences with meds and doctors.

I had this happen with my anti-depressants when I started going back on them again. She wanted me to try one I tried years ago, explaining to me that the meds have been reformulated over the years and maybe they might work now. About 2 weeks in I was feeling sick as a dog. I called her up to tell her I just couldn't stomach them. She called me in, we talked and she gave me something else to try. No big deal.

But doctors are people and therefore all doctors will act differently. My only advice would be to talk to your doctor with your concerns and see what kind of plan can be installed that will make you feel comfortable and make him feel like you're not giving him a chance.

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RE: Fear of Lupron ? - 1/21/2014 6:49:09 PM

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Any doctor who discourages a second opinion is a doctor you should stop seeing. If you can find a doctor who specializes in endometriosis, since it appears you have a severe case, you should see said specialist.

Treatment for severe endo typically involves some kind of hormone therapy. A simple google search turned up several options (I post from my phone or would include links). I'm sure you realize that birth control is often prescribed as a treatment for endometriosis.

On a side note, you say you have severe social anxiety. Are you being treated for that? I only ask because you mentione xanax to deal with the side effects of lupron, but if you have severe social anxiety, you should already be taking some type of benzodiazapem (like xanax) for that.

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RE: Fear of Lupron ? - 1/21/2014 6:56:49 PM

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Here are the options for treating endo' with drugs.

Most Common - BC pills to manipulate hormone balance.

Very Common - Use Lupron to "turn off" your hormones for a while.

Very Very Uncommon - Using a drug ( i can't recall the name ) to treat the immune system. There is a theory that endometriosis is a secondary auto-immune disorder. Personally this theory seems every bit as viable as the better known "retro" theory.

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RE: Fear of Lupron ? - 1/21/2014 7:08:42 PM

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You're helping me sort through my concerns.

Yes, i have had done the BC treatments many many many times,
different dosage levels, estrogen here, progesterone there, and none have every helped.

As for the anxiety, my General Practice Dr. has me on Prozac and Trazodone.
i'm at present working on getting help for the mental stuff, but that's hard too.
Lol, these matters turn into quite the tangled knot very quickly.

i'm very grateful for all the sensible points our CM members offer.

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RE: Fear of Lupron ? - 1/21/2014 7:26:50 PM

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Your current doctor should have no issue with you seeking a second opinion especially since he isn't a specialist. I went to my primary care physician with symptoms and his diagnosis was depression and wanted to prescribe me Prozac, I immediately searched out a second opinion and within a week I had a battery of tests and found myself in front of an endocrinologist who informed me that I wasn't depressed but had Thyroid cancer. That second opinion probably saved my life.

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RE: Fear of Lupron ? - 1/21/2014 7:31:40 PM

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i'm glad you go for a second opinion. All of that had to be very scary for you.

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RE: Fear of Lupron ? - 1/21/2014 7:39:37 PM

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I think the following eight months after were the hardest. I was lucky to have found a specialist who worked with me on my treatment options as two months after my initial thyroid diagnosis I also developed stage 1 cervical cancer and had a precancerous tumor removed from one of my breasts. That was almost six years ago and although I have had several surgeries I have become my own best advocate for my body and praise second and even third opinions.

Please find your voice and speak to your doctor.

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RE: Fear of Lupron ? - 1/21/2014 8:42:40 PM

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Endometriosis is a crappy disease, I have it and it is no fun.

Here's the deal with Lupron, it's not likely to fix anything, at most it suppresses symptoms for a year to 18 months after treatment.

I am 31, and was on Lupron a year ago, I went on it to buy time. After my lap my symptoms immediately reoccurred, and Lupron served a 2 fold purpose buying time so my body could get a break, and to see if I responded to the Lupron which meant there was endo or adenomyosis involved.

My symptoms returned full force within weeks of stopping Lupron, turned out I had adenomyosis, a sister condition to endo.

With Endometriosis, especially if it's at the point where you've had at least one surgery, Lupron is coming up in conversation, etc, you REALLY need to be working with an Endometriosis specialist. This is a complicated disease and most gynecologists do not have the skills to treat it. Many doctors do not properly removed diseased tissue during surgery, leading to quick symptom reoccurrence, and do not understand the actual efficacy of drugs used to treat the disease, like Lupron.

Which is insane since Lupron is a big bad band aid that causes tons of problems all on it's own. Specialists I have worked with have said they only use Lupron to temporarily shrink disease before surgery, like in the case of endo on the bowel and they want to minimize risk for bowel resection. Or they use it in cases like mine where all other hormonal treatments have failed, successful surgery just happened, it will aid diagnostically, and the symptoms are totally incapacitating.

And I repeat most studies have shown that Lupron only TEMPORARILY shrinks endo. It does not kill it.

There are a few good online support groups that have links to lists of endo specialists, or have tips on how to find one.

http://hystersisters.com has a great sub forum for endometriosis, no you do not need to be seeking a hysterectomy to post there.

http://endo-resolved.proboards.com/ has a list of doctors members have tried and have had luck with and has tons of threads full of information. In the general forum there is a stickie for the specialist list.

If you need support feel free to hit me on the other side.

Regarding being assertive with doctors: I reached a point with this where I stopped going to appointments alone, and I usually regretted it if I didn't. Bring someone close to you with you into the appointment. It helps to have another ear, a cheerleader, and when needed an attack dog ;) It helped me a lot with social anxiety with doctors, as I knew someone in the room had my back entirely and did not think my questions or concerns were crazy.

Regarding Lupron: When I was on Lupron I took the addback progestin, multivitamins, and an anti-depressant. All helped a lot with the menopause crash course. Anti-depressants not only can help mediate depression, anxiety and mood swings caused by Lupron, but it also helps some with hot flashes. I have a history of severe depression so I was really thankful to have that as a safety net. With the progestin I had fewer hot flashes with decreased severity. I did feel a bit off the entire time though.

However, it's hard to tell what was what since I was still medically a mess. My digestive functioning improved but was still far from normal, and I needed intensive physical therapy to get my entire lower half of my body functioning. So I don't know how much of my feeling off was Lupron and how much was the mess endometriosis had left behind. However, I was so so so thankful for the break from the incapacitating symptoms. Lupron allowed me to tread water, without it I was gonna drown.

Regarding me and endo now: I am doing great currently I had a hysterectomy to deal with the adenomyosis and all my endometriosis was cut out. No symptoms of any kind currently, I still have my ovaries so no menopause. I need to be on long term progestin treatment to prevent endo regrowth.

Good luck with it, happy to provide support if you need it.

< Message edited by sheisreeds -- 1/21/2014 8:44:02 PM >

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RE: Fear of Lupron ? - 1/21/2014 8:57:27 PM

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For others on this thread, a bit on Lupron: The side effects that a being mentioned, are actually effects of the drug. Lupron is a drug that ceases the production of sex hormones. So essentially your hormones get cranked out to the point of exhaustion and then full on menopause like symptoms set in within 21-40 days. This is not a some people get nausea, some people get dizziness type of side effect. It's actually a rapid onset of menopause symptoms, which also by the way is pretty different than naturally going through the change.

The drug is controversial in the treatment of endometriosis since it has been shown to have little to no long term impact on disease, and can't be used for more than 6 months due to things like bone loss. The drug is also particularly risky for some, especially those with mood or anxiety disorders.

It has it's purposes in endometriosis treatment, but unfortunately most gynecologists don't know current evidenced based standards for treating endometriosis, or don't have the skills to execute them. Also, unfortunately those same doctors don't have the skill to develop a safe plan for the use of Lupron with limits some of the dangerous effects of the drug.

Just some context, since Lupron can sound like a lighter than it is. It is actually classed in with chemo drugs.

< Message edited by sheisreeds -- 1/21/2014 8:58:45 PM >

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