Another possible case of Post Aromatase Inhibitor Syndrome!

Member Stories
#1

Welcome to our community. Please fill in the following template as a way of introducing yourself, and helping others to understand your background and situation.

Where are you from (country)? Scandinavia - English is not my native language

How did you find this forum (Google search – if so, what search terms? Via link from a forum or website – if so, what page? Other?)

Google search

What is your current age, height, weight?
31 Years old, 6ft 2in, 180lbs

What specific drug did you use (finasteride, dutasteride, saw palmetto, isotretinoin/Accutane, fluoxetine, sertraline, citalopram, leuprorelin, etc…)?

Arimidex or anastrozole

What dose did you take (eg. 1 mg/day, 1 mg every other day etc.)?

When my estrogen was at its highest I was taking 0,5mg EOD. This was the protocol that brought the first crashes.

What condition was being treated with the drug?

Overproduction of estrogen - Which was caused by my testosterone replacement therapy.

For how long did you take the drug (weeks/months/years)?

I have used arimidex for years. No problems in the past.

How old were you, and WHEN (date) did you start the drug?

26

How old were you when you quit, and WHEN (date) did you quit?

I quit arimidex last august so 30.

How did you quit (cold turkey or taper off)?

You could call it a taper.

How long into your usage did you notice the onset of side effects?

First major crash happened in september of 2016 and from there on I noticed the first symptoms. After completely ceasing the drug in august 2017 I noticed the first persistent side effects.

What side effects did you experience that have yet to resolve since discontinuation?

Check the boxes that apply. You can save your post first, then interactively check/uncheck the boxes by clicking on them. If your symptoms change, please update your list.

Sexual
[x] Loss of Libido / Sex Drive
[ ] Erectile Dysfunction
[ ] Complete Impotence
[x] Loss of Morning Erections
[ ] Loss of Spontaneous Erections
[ ] Loss of Nocturnal Erections
[ ] Watery Ejaculate
[ ] Reduced Ejaculate
[ ] Inability or Difficulty to Ejaculate / Orgasm
[ ] Reduced Sperm Count / Motility

Mental
[x] Emotional Blunting / Emotionally Flat
[x] Difficulty Focusing / Concentrating
[x] Confusion
[x] Memory Loss / Forgetfulness
[ ] Stumbling over Words / Losing Train of Thought
[ ] Slurring of Speech
[x ] Lack of Motivation / Feeling Passive / Complacency
[x] Extreme Anxiety / Panic Attacks (Only right after the crash)
[x] Severe Depression / Melancholy (Only right after the crash)
[x] Suicidal Thoughts (only right after the crash)

Physical
[ ] Penile Tissue Changes (narrowing, shrinkage, wrinkled)
[ ] Penis curvature / rotation on axis
[ ] Testicular Pain
[ ] Testicular Shrinkage / Loss of Fullness
[ ] Genital numbness / sensitivity decrease
[ ] Weight Gain
[ ] Gynecomastia (male breasts)
[ ] Muscle Wastage
[ ] Muscle Weakness
[ ] Joint Pain
[ ] Dry / Dark Circles under eyes

Misc
[ ] Prostate pain
[ ] Persistent Fatigue / Exhaustion
[ ] Stomach Pains / Digestion Problems
[ ] Constipation / “Poo Pellets”
[ ] Vision - Acuity Decrease / Blurriness
[ ] Tinnitus (ringing or high pitched sound in ears)
[ ] Hearing loss
[ ] Increased hair loss
[ ] Frequent urination
[ ] Lowered body temperature

[ ] Other (please explain)

What (if any) treatments have you undertaken to recover from your side effects since discontinuation of the drug?

I have not tried any new medication to treat this condition.

If you have pre or post-drug blood tests, what hormonal changes have you encountered since discontinuing the drug (please post your test results in the “Blood Tests” section and link to them in your post)?

Anything not listed in the above questions you’d like to share about your experience?

Tell us your story, in your own words, about your usage and side effects experienced while on/off the drug.

In the summer of 2016 - after being on TRT for few years - I noticed that overall state of well being had become somewhat flat. Doing extensive lab work I noticed that my estrogen had crept up. My levels were around 50 pg/ml. To me high always made a kind of a serotonergic state - estrogen mainly increases serotonin in my understanding. Now don’t get me wrong. High estrogen also had some positive effects as well: high libido, good vascularity, good skin, high range of emotions - which can be a negative also.

After this I increased my AI protocol and at first this seemed to work quite well. Taking 0,5mg EOD kept my E2 levels around 20-30 pg/ml. My overall well being also increased. I was more motivated; libido was good. I also lost a lot of water weight.

My first crashes occured in september of 2016. First noticable symtoms were the loss of libido, loss of erections and feeling like sh!t for the most of the time. Now during the next few months a certain pattern repeated: I would cease the AI; Pull labs and notice that E2 is within normal range. After that I started to get high estrogen symptoms again - which before this always meant that my serum E2 was high; Started taking 0,25mg of Arimidex based on those symptoms; A crash would follow.

What I now understand looking back is the fact that my serum E2 was probably normal but the estrogen receptors were upregulated. This brought the false sensation of high serum E2.

During this cycle of crashing I would always return to a “normal” state of wellbeing in about 10 days. This was all until at the end of 2016. Around december I seem to stay in a state of low estrogen symptoms - despite having normal E2 levels.

At first I though that the E2 deprivation had caused some neurological damage but after evaluation other physical symptoms, I have come to the conclusion that this is not the case. The theory that is proposed by Gents93 seems like the most valid one. Now I have to add that there are few differences between us. I do not seem to get permanently worse when I increase my E2.

Life is much harder at the moment in pretty much every area of my life. The drive and zest for life that I had is now pretty much gone. I also feel more disconnected from my loved ones. This disease state feels like the most important aspects of personality that make you, you, are now gone - or buried beneath these symptoms.
Now I do have a bit of optimism left. I seem to make a very slow and gradual improvement in some areas. I notice this by looking my daily journal.

Now I now that this forum is mainly for people with 5ARI based conditions, but I think that our condition shares a lot of same mechanism - albeit just with and different receptor and enzyme.

Hopefully with time we can all find solutions to these hellish conditions.

4 Likes
#2

Wow this sounds extremely familiar and what I basically wrote in my own post. I would say this is exactly what happened to me as well. I truly believe the same mechanism of action that has happened to PFS guys has happened in us. Of course, there is variability between us two and severity and tissues affected. I would like expand on that further at a later time.

I would like to address that it is difficult for PFS guys to understand that this can also take place as I have encountered some adversity with having PFS guys believe/understand this - just as it is difficult for a doctor or a normal person person to understand PFS or believe it is possible. There are some KEY differences between our condition and PFS, these differences are the reason why I believe that we have an estrogen receptor mediated issue, and not AR. I will also expand on this further with scientific literature to support this. I think the problem here lies that people in this forum think estrogen is a fucking menace. This is not true. Males need estrogen for MANY processes including reproduction, sexual functioning, and muscle mass maintenance. However, estrogen can be a menace in excess or without androgens receptor signaling in your cases. I will also supply literature for this.

Thanks for posting man.

1 Like
#3

Senberg
could you tell why were you on TRT on the first place? i mean had you used Accutane, steroids or herbs like saw palmetto?

#4

I had testicular damage in my twenties. My free testosterone levels were below the normal range. For two years I tried to increase my levels via natural methods. None of them worked.

Trt - when it worked - was a godsend. Im still on it even though it does not give the same benefits.

#5

Senberg you are not the only one to get sides from Arimidex. There are many on different forums but since they did not use Fin ,they dont report here. Also if you go on women forums you will see many similar posts about Arimidex . I would say if you dont read about their Arimidex use, you would think they are talking about Fin.

#6

Man i feel so bad for douglasmich, getting PFS and then post-AI syndrome on top. He was my age too when he got pfs

1 Like
#7

could you provide a link i’m very interested to see because i have looked myself and havent found woman reporting this

#8

marny forums but mostly breas cancer fourms like


Hi Just had to add to this thread,
I was on Ari,idex for about 1 year but had so amy problems…like you ladies. The pains in my feet were so bad that when i got up in the morning i could hardly walk. I had pains in my hands and my hips and lower back. I felt sick all the time which was awful. I tried everything (supplemnts etc took pain killers) and then asked to change to aromisin. God what a difference. No pains in my feet i am back to walking miles again. I still get some probs with my hands and one hip but nothing really.(part of getting old i think). It may be worth asking for a change in meds…nothing ventured…nothing gained. Oh yes and the feeling sick all the time has gone.

and crying and no sex drive
Approx April 2013 I started on Tomaxifin, side affect symptoms came on throughout approx 8 mo’s to the point I couldn’t get out of a chair without steadying myself the pain was so bad. So my onc switched me to Aramidex. Within days I was worse and then the emotional side affects started. Unexpected crying, feeling worthless, NO sex drive, and weird thoughts towards “not being here”. Then they told me that instead of 5 yrs it would be 10… I was overwhelmed by the prospect of “living” that way. Being scared to stop taking but having no alternative through KP protocal. I finally just weaned myself off approx 3 yrs ago.


‎13-08-2018 11:29 PM

I am 67 years old I had a lumpectomy in June 2012 some lymph nodes removed stage 2 I have been on armidex for 6 years now. Joint pain fatigue lack of sex drive hot flashes although not as bad as they where with menopause but I took the meds because I didn’t want the cancer to return so if this helped ok I was looking forward to the fact that they said 5 years well when I got close to the 5 year mark I was told by Onc they have decided that it is best to stay on it for 10 years Needless to say I was very disappointed but what can you do. So I am plugging along and I’m hoping by the 10 year mark they font changed the timeline again. Joint pain is bad at times I have arthritis issues anyway this has not helped also no interest in sex at all . Just none I could care less. Just wanted to mention this Thank you for letting me vent

#9

The things is that all those women had the symptoms mentioned while they were on the drug.

I did spend some time browsing through these womens breast cancer forums but they were no threads on persistent symptoms after the AI treatment was ceased.

1 Like
#10

Yeah all those symtoms are expected for woman on arimidex or other AIs. Nothing jumping out at me here as atypical like our situations.

But it makes me wonder, why don’t more woman on aromatase inhibitors face the same sides like men who take anti androgenic substances. I feel like it could be age. We don’t see many older men being affected like younger guys who take fin.

#11

I think they are more focussed on their primary issue, cancer.

#12

Whatever they’re focused on, doesn’t seem like they share our issue at all. Especially since it resolves after the drug is stopped. I’m going to continue looking

#13

This is so similar to what has happened to me. Can I ask for an update please? Do you think this is because our aromatase enzymes are damaged so they won’t convert to estrogen?

#14

Well my condition varies from feeling quite bad to feeling quite ok. Im still not back to normal though.

There’s nothing wrong with my bodys ability to make estrogen. One of theories is that the problem lies in downregulated estrogen receptors. Theres more conversation about this in the introductory thread of gents93. Check that out if you want to learn more. Also please considering starting your own thread and sharing your story!