Adrenocortical Hormone Abnormalities in Men with CP/CPPS

[uksufferer2]

hi to all and a huge thanks to Dr Dimitrakov.

I found it interesting webslave that you got instant relief from Betamethasone which is similar to Dexamethasone (the treatment of choice for patients with CAH), I too had a similar experience when I had my wisdom teeth out ... now this may have been from the local anesthetic I had (large dose of temazipan/valium and its muscle relaxing properties) or perhaps the doctor gave me Dexamethasone which is often given to patients when they have wisdom teeth removed (due to its anti inflammatory properties) ...I'm trying to confirm this from my dentist (it was 7 years ago!)

At the risk of jumping the gun a tad, if this is all confirmed I would guess the treatment of choice would be low doses of Dexamethasone ... with monitoring due to the risk of using steroids and the risk of adrenal shutdown ?

Dr Dimitrakov could one not get tested for late onset CAH ...would that not be a good test to have?

thanks

[J Dimitrakov]

Yes, it is possible to get tested. However, since this is (usually) non-classic CAH, testing is challenging and results, esp. negative results, need to be interpreted with caution or reconfirmed using a more sophisticated technique (e.g. genomic or proteomic technique)

best,
JD

[uksufferer2]

Are those kind of tests widely available to endocrinologists?

Did you perform these tests in your trial ?

Are you able to mention if any of the patients in your trial have gone on to have any relief/success from using medication used by sufferers of non classic CAH?

Thanks a million for you input in to this forum !

[J Dimitrakov]

The test we performed is state-of-the-art and is not routinely used due to cost. See previous posts regarding the other questions. we have an ongoing trial following people on specific targeted therapy.

Best,
JD

[uksufferer2]

any idea of when you will be publishing the results of the trial ?

[uksufferer2]

Which would prove more of a conclusive diagnosis in your opinion Dr D
- to get tested for CYP21A2 mutations
OR
- isotope dilution liquid chromatography followed by atmospheric pressure photospray ionization and tandem mass spectrometry (LC-APPI-MS/MS) for the different levels of steroids in your study.

thanks!

[J Dimitrakov]

I am afraid I cannot answer that question since it asks for specific diagnostic information. Please discuss with your physician.

Best,
JD

[uksufferer2]

Hi,
couple of questions I just had over the study which I hope Dr Dimitrakov can kindly answer (hopefuly my questions are not too stupid )

-Were the 27 CPPS patients pre selected on being likely carriers of a hormonal balance or were they just random CPPS sufferers?

-Of the 27 CPPS patients how many of them had at least a moderate case of abnormal hormone levels ?

-Is there anywhere to see the raw data?

[painagain]

So most of us with CPPS are deficient in certain things that those without CPPS are not deficient in. Is there a pill to give to those of us who suffer with CPPS to balance our deficiencies discussed in this thread? Might that help us heal?

[uksufferer2]

So most of us with CPPS are deficient in certain things that those without CPPS are not deficient in. Is there a pill to give to those of us who suffer with CPPS to balance our deficiencies discussed in this thread? Might that help us heal?

The paper talks about future trials of low dose dexamethasone ...you would need to get tested first tho as this is a powerful steroid ...and monitored whilst taking it by an expert.

[ppp]

I was wondering - with my limited medical knowledge - whether the above mentioned findings can also, through some distant channel, explain why some people tend to get CPPS-like symptoms by taking anti-androgens such as finasteride.

I thought this was something very interesting (and prevalent I can provide many links) that could help improve our understanding of the condition. Many YOUNG balding gents have taken propecia and since then started seeing doctors for pain in testicules, chronic pelvic pain some of which have also found stretching to be helpful. I must admit these seem to be the people who are most vulnerable to antiandrogens as most finasteride users don't necessarily have these symptoms.

I could buy any theory :)(let's say a lack of one enzyme as suggested by the study) that could also explain:
1- The effect on muscle function / why how we develop trigger points
2- The anti-androgen effect.

I would be grateful if Dr. J.D. can comment on this.

PS1: Not to mention that the decreased libido and other changes ( either ED or changes in semen are present in many young CPPS sufferes and VERY common in the finasteride sample)

PS2: I wanted to add a data point : My brother has also CPPS (no I am not talking about anti-androgen here, I don't think he took any, I am talking about our genes here).

[cam_05]

Papichullini, did you give licorice a try? I took it a while ago, not consistently and not for this however. Cleans you out when you first start taking it. Anyway, how is it going?

PPP — I've looked into that link as well. as one of those young balding gents who experienced side effects, but mainly lack of interest and ability, not so much pain. For what it's worth, here are my personal experiences/observations:

I personally believe the 1-2% quote of people who experience side effects is inaccurate. Admittedly it's hard to say when going on forums for hair loss and anti-propecia forums as the numbers will be distorted there, but most studies done are on older men, not young men, who may have already had a decline in sexual activity.

After a thorough internal massage, my performance was improved beyond pre-propecia levels, which made me realise I'd actually been in a slow decline due to poor postural habits and the tendency towards tension most likely

Thirdly, the sudden decline in performance freaked the f#ck out of me. I couldn't escape the thoughts that I'd lost my manhood and was doomed to a life of a limp dick. this really inhibited my recovery, and in fact made my condition worse over the long term.

In my case, i had the tension there before i started taking the drug, although on a much more latent level. if anything, I believe propecia accelerated my decline due to catastrophic thinking. Maybe there is a link for others, but i really think given our body's amazing ability to heal itself, our hormone levels would return to normal and things would return to how they were....unless of course, we have a tendency towards stress and catastrophic thinking. I confess I'm not a doctor however, so take my opinion for what it's worth, but disregard it you feel like there is sufficient evidence to say otherwise.

[ppp]

Thanks for your replay cam_5. Although I do not agree with what you say I don't think it is the appropriate place to debate that. Feel free to send me an email and I could send you further links.

After I wrote my message I realized that on this forum, it is quite accepted that some supplements taken by body builders could increase the probability of CPPS. These supplements alter your homones and particularly Tlevels. So I could have given this as another example instead of finasteride. In other words all I wanted to say that there must be a hormonal component to CPPS that any theory would need to explain - I feel IMHO.

[user01]

"Tendency to gain weight and unable to lose it, especially around the waist. High frequency of getting the flu and other respiratory diseases and these symptoms tend to last longer than usual. Tendency to tremble when under pressure. Reduced sex drive. Lightheaded when rising from a lying down position. Unable to remember things. Lack of energy in the mornings and also in the afternoon between 3 to 5 pm. Feel better suddenly for a brief period after a meal. Often feel tired between 9 - 10 pm, but resist going to bed. Need coffee or stimulants to get going in the morning. Crave for salty, fatty, and high protein food such as meat and cheese. Pain in the upper back or neck with no apparent reasons . Feels better when stress is relieved, such as on a vacation. Difficulties in getting up in the morning. Lightheaded.

Other signs and symptoms include:

Mild depression, Food and or inhalant allergies, Lethargy and lack of energy, Increased effort to perform daily tasks, Decreased ability to handle stress, Dry and thin skin, Hypoglycemia, Low Body Temperature, Nervousness, Palpitation, Unexplained hair loss, Alternating constipation and diarrhea, Dyspepsia".

Underline mine.

I also have many of those symptoms. Webslave, I have been experimenting with nutrients that supposedly rebuild the HPA axis. Have you tried that? Details available? There is a website, rather poorly done, but nevertheless that almost exactly describes my symptoms. It is The Lin Institute. Any info on that? I've been taking the supplements sold by this organization (for about 2 1/2 months), and my chronic pain is much, much better. However my libido and function is still zilch. Unfortunately, that is for me the worst part of this condition.

[webslave]

Where are you quoting that material from?

Never heard of the Lin Institute.

For libido, I used to find zinc capsules gave me a boost (but made me feel nauseous).