Adrenocortical Hormone Abnormalities in Men with CP/CPPS

[Spasman]

Study On The Effect Of GW876008 On Cerebral Blood Flow In Irritable Bowel Syndrome (IBS) Patients And Healthy Volunteers:
http://www.clinicaltrials.gov/ct2/show/ ... one&rank=8
Dose Response Relationship for Single Doses of Corticotropin Releasing Hormone (CRH) in Normal Volunteers and in Patients With Adrenal Insufficiency:

http://www.clinicaltrials.gov/ct2/show/ ... one&rank=1

[J Dimitrakov]

Study On The Effect Of GW876008 On Cerebral Blood Flow In Irritable Bowel Syndrome (IBS) Patients And Healthy Volunteers:
http://www.clinicaltrials.gov/ct2/show/ ... one&rank=8
Dose Response Relationship for Single Doses of Corticotropin Releasing Hormone (CRH) in Normal Volunteers and in Patients With Adrenal Insufficiency:

http://www.clinicaltrials.gov/ct2/show/ ... one&rank=1

Very interesting studies... Functional MRI (fMRI) is coming to the area of CPPS as well and there will be a clinical trial at some point in the future. This technology is absolutely amazing! It allows evaluation of pain mechanisms with unprecedented accuracy. Furthermore, it's quantitative and fairly robust... Therefore, should be reproducible in the hands of different investigators and should provide a common framework for understanding the disease.

Thanks for posting those, Spasman!

Best,
JD

[garyholc]

All this is so interesting, and so exciting, just the prospect that in the future, there may be a standard treatment for this condition. I dont know if other people on here have found this, but just reading all these studies and the promise they may hold has made me feel somewhat better in myself. I think part of the fear of this condition is not knowing exactly what brings it on (we have an idea) and not knowing exactly how to treat it. I have to say a big thank you to Dr Dimitrakov for taking the time to post so regularly on here, and for the work he (and others) are doing into this condition, no doubt in the future it will make such an important impact on the lives of millions of people across the world.

[graeme]

For me and others who worry about our kids (passing genetics on) you just kind of know that this condition will not have the same impact on them as it does on us thanks to these studies

If I have to live with this then so be it (I hope these studies move quick) but I would not want my little one to have to go through all this sh1t

[ramana]

I showed the paper and discussions to my pain management doc. He read through it and found it very interesting. He said however, that testing for the various substances in the pathways is not reliable at all. He advised me to follow it up at a major academic center where the labs can be more accurate. Also, he was wondering if ultimately it is going to be of any use since even if my readings match the findings of this research, there does not seem to be any treatment right now. So for now SP seems to be the only answer.

[J Dimitrakov]

I showed the paper and discussions to my pain management doc. He read through it and found it very interesting. He said however, that testing for the various substances in the pathways is not reliable at all.

I would actually disagree with that. It is true that using the OLDER (ELISA-based) methodology, testing can be challenging. But that should not be grounds for dismissing the underlying idea of systemic involvement in CPPS. Furthermore, the newer (more precise) proteomic methodology has been well-validated in previous peer-reviewed publications and is routinely used for diagnosing inborn conditions of metabolism in children as well as testing for steroid abuse in athletes.

He advised me to follow it up at a major academic center where the labs can be more accurate.

The person who performed the testing in our study is a STEROID CHEMIST and is the director of the National Steroid Reference Lab, so, I stand behind our findings. As I mentioned in my previous posts, this IS NOT a routine diagnostic test (YET) and it needs to be performed at major academic centers. Even then, I would highly recommend that the results be interpreted by a team of endocrinologists and internal medicine specialists and a urologist interested in helping the patient.

Also, he was wondering if ultimately it is going to be of any use since even if my readings match the findings of this research, there does not seem to be any treatment right now.

Well, this is not correct. There is a treatment that can be targeted at individual patients and this is well described in endocrinology and other major textbooks. The implications of our findings go beyond the treatment, however. First, in the future, if someone is found to have a polymorphism in the CYP21A2 gene, even if asymptomatic, it would be possible to recommend specific behaviors (or avoidance of specific behaviors) so that you we should be able to prevent CPPS. Second, future studies should make it possible to see our findings in the larger scheme of things and treat effectively. For examples, CYP21A2 is in a network with a dozen or more genes. By interrupting the cascade of reactions it will be possible to treat CPPS pretty much like we treat hypertension today - based on mechanism rather than based on etiology.

Best,
JD

[ramana]

I would actually disagree with that. It is true that using the OLDER (ELISA-based) methodology, testing can be challenging. But that should not be grounds for dismissing the underlying idea of systemic involvement in CPPS. Furthermore, the newer (more precise) proteomic methodology has been well-validated in previous peer-reviewed publications and is routinely used for diagnosing inborn conditions of metabolism in children as well as testing for steroid abuse in athletes.

Thanks for the information. Is this proteomic methodology commercially available i.e. as a patient in bay area (SFO), can I get the testing done anywhere?

The person who performed the testing in our study is a STEROID CHEMIST and is the director of the National Steroid Reference Lab, so, I stand behind our findings. As I mentioned in my previous posts, this IS NOT a routine diagnostic test (YET) and it needs to be performed at major academic centers. Even then, I would highly recommend that the results be interpreted by a team of endocrinologists and internal medicine specialists and a urologist interested in helping the patient.

I did not understand this. I think what the pain doc was saying was to go to places such as your institution for accurate testing.

Well, this is not correct. There is a treatment that can be targeted at individual patients and this is well described in endocrinology and other major textbooks.

Thanks again. This is useful

The implications of our findings go beyond the treatment, however. First, in the future, if someone is found to have a polymorphism in the CYP21A2 gene, even if asymptomatic, it would be possible to recommend specific behaviors (or avoidance of specific behaviors) so that you we should be able to prevent CPPS. Second, future studies should make it possible to see our findings in the larger scheme of things and treat effectively. For examples, CYP21A2 is in a network with a dozen or more genes. By interrupting the cascade of reactions it will be possible to treat CPPS pretty much like we treat hypertension today - based on mechanism rather than based on etiology.

Sounds revolutionary

In summary, as a patient the questions are
a) Can I do any testing based on the results of the paper. If so, test for what and where and through which kind of doc?
b) Can I hope for a treatment? As you mentioned the treatments are already mentioned in endocrinology textbooks which is encouraging, but it seems I have to get a very progressive PCP who can probably understand and make a urologist and endocrinologist talk to each other.

Once again THANKS for having the time and patience to post over here.

[J Dimitrakov]

Thanks for the information. Is this proteomic methodology commercially available i.e. as a patient in bay area (SFO), can I get the testing done anywhere?

I am not familiar with the capabilities of different insitutions but I would suggest you discuss it with a physician (again, willing to HELP rather than anything else). Probably the best start would be a specialist in the Bay area. The technology is certainly available and has been published previously. However, I would caution that even in this case, it requires a specialized lab (preferably a lab doing steroid chemistry analysis). Besides, there are a number of special requirements for sample collection and transportation which, if not strictly observed, can bias the result one way or another.

In summary, as a patient the questions are
a) Can I do any testing based on the results of the paper. If so, test for what and where and through which kind of doc?

The findings we reported are research only at this time. I don’t think you can get tested as part of a diagnostic evaluation for CPPS since the test has not been shown to be a diagnostic test for CPPS. However, you can enroll in a research study for the validation of those markers.

The marker validation is not trivial (actually, no single test we use for CPPS or PBS/IC has ever been validated as per the FDA requirements). I have described the initial steps for validation in my recent editorial (see link to biomarkers for CPPS). The full-text should be freely available as per Elsevier’s copyright policy.

b) Can I hope for a treatment? As you mentioned the treatments are already mentioned in endocrinology textbooks which is encouraging, but it seems I have to get a very progressive PCP who can probably understand and make a urologist and endocrinologist talk to each other.

That is exactly the problem we are facing in (our) CPPS community. Most physicians assume it’s an incurable and untreatable disease beyond simple scepticism. They have GIVEN UP on ever finding something that we can use to treat CPPS based on testing or evidence. I do hope that this will change. I am not sure when.

Hope this is helpful – best of luck

JD

[Paso]

Does these findings have any relevance for PBS/IC?

[carld]

Does these findings have any relevance for PBS/IC?

I believe this is all related...Perhaps CP/CPPS and IC or PBS is just a variance of the same pathology related to AHA. Good news is Dr. D and his crew are working to find all this out and in time I really believe there will be a solid treatment to balance our abnormalities and address the stress we are prone to.

[J Dimitrakov]

I believe this is all related...Perhaps CP/CPPS and IC or PBS is just a variance of the same pathology related to AHA. Good news is Dr. D and his crew are working to find all this out and in time I really believe there will be a solid treatment to balance our abnormalities and adress the stress we are prone to.

This is correct. The underlying mechanisms are probably similar or common.

Best,
JD

[jj77]

I have a question for Dr. Dimitrakov:

Can a deficiency in cortisol pathways also be related to the (generally intermittent) ED issues which plague many CPPS patients?

[ramana]

More (basic) questions:
If this was a game of hormones/enzyme, how does trigger point help? I can see relaxation playing a role though.

[jj77]

More (basic) questions:
If this was a game of hormones/enzyme, how does trigger point help? I can see relaxation playing a role though.

If a lack of cortisol leads to muscle tension issues, you can develop trigger points everywhere. Probably the pelvic floor is one of the most susceptible areas of the body when it comes to muscle tension, so we develop all the hell named CPPS. If you treat the trigger points, you can have a degree of improvement, but it needs to be mantained for life. Restoring the cortisol pathway could led to easier treatments, who knows.

This is just my penny, obviously. Just imagining.

[kevin]

More (basic) questions:
If this was a game of hormones/enzyme, how does trigger point help? I can see relaxation playing a role though.

Remember, CPPS is likely caused by a variety of factors coming together. It's not JUST muscular or JUST neurological or JUST endocrine or JUST immune, etc.; it's probably caused by all those systems interacting in a network. Fix one part of the network and you'll see an improvement in symptoms.