Lupron Victims please participate in survey

lupron
#1

Dear Lupron Victims

We have now launched a comprehensive survey to characterize the persistent syndrome arising from anti-androgenic drugs including leuprolide (Brand Name Lupron etc.), finasteride, dutasteride, saw palmetto extract, isotretinoin (Accutane etc.) and antidepressants. The administrators of this forum believe that there is a bigger picture going on, and that there indeed may be a biological link.

Establishing such a link would help us make our relatively speaking “little problems” into a big one of national and international importance. Achieving such recognition and status is absolutely vital in recruiting significant funding from NIH rare disease funds. We need this level of funding for advancing in our search for biological understanding and ultimately a cure.

If you are a Lupron Victim and reading this, you may have been directed here by our friend and community leader Lynne Millican from the Lupron Victims Hub. For you to participate in our survey, it is sufficient that you give us a quick “Hi” in this topic (please register first if you have not already done so - select GnRH Analog for “Substance”). We will pick up on that and make sure you get your personalized survey link, which will be emailed to the email address you used to register here.

We are really looking forward to having as many Lupron Victims participate as possible (both men and women). Your participation and help will be key to further positioning our collective syndrome on the map.

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#2

Yes - we warmly welcome you - and look forward to co-operating.

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#3

It would be great if, after the PSSD and PAS communities, we could get this community on board, too.

Warm welcome to all Lupron victims!

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#4

There are a few GnRHa victims already registered on this site.

It would be great to hear from all of you!

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#5

Thank you so much to Awor for all the hard work you’ve done over the years, and for your reaching out to Lupron victims and including them in your work. And a big thanks of appreciation needs to go Axolotl, the main architect of this survey - I can only imagine the time involved, and effort invested, in creating a survey of this breath and detail. And shortly, once the survey’s testing phase is over, I will be notifying every Lupron/GnRHa victim I’m aware of (via email ‘blast’ and posting link on my website), and am strongly urging their participation. This survey’s comprehensiveness holds great promise to reveal the extent of damage we suffer. Thank You again!

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#6

A very warm welcome to you Lynne!
I hope you have been well.

Also, many thanks for all you have done on behalf of the post-GnRHa community. We look forward to having you all with us in this battle.

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#7

Dear Lynne, it is a truly great day to see your post here. For all that don’t know Lynne, let me introduce her: She is a legend, and a warrior, like I have seldom met in my life. Many years ago, Lynne took Lupron (leuprolide), which belongs to the drug class of GnRH analogues. Despite having become very ill from Lupron, Lynne is fighting for recognition of the Lupron problem like a lion. She has approached politicians and media for many years. Through her relentless work and effort, she has achieved a significant media presence for the Lupron Victims. If you have a moment, please take a look at her website. It represents everything she knows about Lupron persistent side effects, and many of the actions she was involved in. The site is massive.

Lupron acts as an agonist at the pituitary GnRH receptor level. Agonism (activation) of GnRH receptors initially results in the stimulation of luteinizing hormone (LH) and follicle-stimulating hormone (FSH) secretion. However, after several weeks, pituitary GnRH receptors become desensitized resulting in decreased LH and FSH secretion, leading to hypogonadism and thus a dramatic reduction in estradiol and testosterone levels regardless of sex. Lupron is used to treat prostate cancer, breast cancer, endometriosis, uterine fibroids, and early puberty. It is administrated by injection (IM or under the skin). Lupron is poison in its purest form. Because it decimates estrogens and androgens at a systemic level (as opposed to fin which “just” reduces DHT in cells which express 5αr2/3), the effect is brutal. So are the side effects. Take your average PFS patient, multiply the side effects by factor X in both breadth and depth, and you’ve got an average Lupron Victim.

What I initially found fascinating, is that Lupron has no direct interaction with 5ar, but still produces a very similar side effect pattern (including post-drug crash in some cases), just much more severe on average, as stated above. For me this is clear evidence that our problem is not about 5αr (or DHT for that matter), but about an (epigenetic?) effect that is triggered by androgen ablation. Finasteride of course is also about androgen ablation, just much more site specific. Anti-depressants have also been shown to have potentially strong anti-androgenic properties through the induction of 3α-HSD, turning DHT into the weak androgen 3α-Androstanediol (often abbreviated as 3α-diol). The effect of this inactivation is a little weaker than the strong effect of finasteride for example, and the distribution of 3α-HSD is not identical to 5αr2/3 either. Nevertheless, the syndromes are quite similar (PSSD). And let’s not forget about Accutane (isotretinoin), a potent 5αr1 inhibitor. Again, different distribution across the body, but still results in a similar phenotype.

Even the most conservative scientists should get it: There clearly is something bigger going on here. Unfortunately, certain PFS engaged scientists are captured in their narrow field of expertise and scientific dogma, which dictates keeping variables to a minimum, preferentially one (finasteride). This is hurting our cause, even though not all in our community have yet come to realize this. Even though science is clearly not the only route to explore, it is the route that @axolotl and I are focused on. The critical success factor for this route is critical mass. We are fighting hard to gain that visibility and critical mass. Our Lupron Victim friends hopefully are going to help us get closer to that critical mass, out of mutual interest.

I am very much looking forward to some Lupron Victims joining in on the conversation here with our wonderful community. I am convinced that we can benefit and gain strength from each other.

Again, a warm welcome to our Lupron Victim friends.

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RU58841 and temporary ED relief
#8

Thank you very much for your kind words and support Lynne. It’s heartening to see you here, and I’m likewise very grateful for your important work.

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#9

Welcome @Lynne, with intros from @Dubya_B @awor and @axolotl like those, I’m really excited to have you onboard with us / to be onboard with you.

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#10

Reading Awors post and the other admins it seems like you’ve also been through hell and yet achieved so much at the same time, really excited and glad to have you here :blush:

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#11

Welcome Lynne. It is wonderful to have you on board. Thank you for everything you have done and to everyone who has worked so hard and sacrificed so much to reach this point.

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#12

A very belated but nonetheless heartfelt Thank You to all, each and every one, for such a nice, warm welcome. And a special hello to old acquaintance Dubya – glad to see you are still fighting (& where did the years go?). I’m still trying to fight but have been having great difficulties (hence the delay in responding) - between chronic gastroparesis, painful and debilitating scoliosis, and fatigue (among other Lupron-induced effects), everything is a real challenge and a big drain. But I know you all can understand all too well. And that is why the launch of this survey is very exciting. I’ve sent out an email to all contacts to my website, as well as posting a notice on my website about the survey, and I hope there’s lots of participation from Lupron/GnRHa victims (as well as hoping for lots of participation from all the drug classes).

I’ve a quick story I’d like to share: Years ago, as a recently graduated RN working on an acute, admitting, psychiatric ward, I was admitting a patient who was very psychotic and was displaying many characteristics all at once of his disease process and so I was fascinated observing him. He was rambling something about the Kennedy’s and was intently following with his eyes a bird (seen only by him) flying about the room, when suddenly he turned to me, and with squinted eyes and a most serious tone said: “You know, the shits the same. It’s the flies that change.” Well, that was many many decades ago, but it remains one of the most profound statements I’ve ever heard – and it is so true, and so applicable to so many things. And it pertains to here as well – the ‘shits’ (the illnesses, the symptoms) the same. It’s the ‘flies’ (the substance, the drug) that change. Many thanks to Awor and Axolotl for their efforts and this survey.

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#13

Hi. I’m very interested in the Lupron survey after receiving an email from Lynne.

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#14

Hello and welcome. You should be getting an email with your personal survey link shortly.

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#15

Is this where I comment to get the survey? Hi…thank you for starting this. I have felt so crazy lately. My doctors (all of them) think I am crazy and tell me there is no way Lupron caused all of my symptoms and say it is all in my head and my friends and family think I am a hypochondriac. Thank you, thank you, thank you!

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#16

Thanks for participating, it will be sent to you within the next 6 hours.

#17

Where do I take the Lupron survey I am new here and was injected with this poison and have not been the same since

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#18

Hi @Marlena454, welcome. Thanks for letting us know - you’ll receive an email invite within six hours. Thanks

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#20

Who all is involved in this Lupron survey and what is the come of the survey

#21

Hi @Marlena454, please see the following blog post for more information

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