Re: Ketoconazole-thanks Renee and Sean
From: Barb (anonymous@obgyn.net)
Sat, 22 Jun 2002 04:09:28 -0500 (CDT)
I dropped out of the trial.My decision.
I discussed my cortisol levels and they said it is the fraction of
cortisol that counts-eg.morning to evening levels etc.My ratio did not
fit with being tried on this medication.The risks for me outweighed any
significant benefits.
I am very drug sensitive as it is.I did have the right to make the
decision,although the doctor wanted to try me on a smaller dose that was
liquid.I said"forget this".
I do have elevated testosterone and androgen,but do not have physical
signs of these problems.My cortisol tests actually all came back low and
yet I was very stressed.
I did get yet another diagnosis after being tested today.
It is called chronic orthostatic intolerance.( usually seen in people
with chronic fatigue syndrome).HMMM...I wonder.-and in diabetes
mellitus.
Some may want to look into this...especially the women that I have
spoken to with venous insufficeny and discolored,mottled,swollen legs.It
seems to be common in diabetics..who knows..could represent another
problem of pcos.
If anyone wants to look at this syndrome..go to google search and type
in purple legs on images and you will get some information.
Many women have complained of hypoglecemic attacks...near fainting
etc..worth a look.
The tests were time consuming and made me faint.I was told that I was
having hypoglecemic reactions,but it is my blood that is pooling.I am
still not familiar with this.Too much on my plate.First they were
considering putting me on spiro..now what?I just don't get this.My blood
pressure readings have been so high...during the tilt table tests and
standing tests..low.
And Renee,
Actually,I had jaundice back in '99...I may have misinterpreted it to be
hepatitis.
I don't know what is next.All this is being done thru the teaching
hospital to get me well.I am having doubts as usual.
Am I the only person who has been diagnosed,misdiagnosed?I don't even
know what to believe anymore.
Totally frustrated
Thanks for all your time Renee.If you can tell me anything about the new
diagnosis...I would appreciate it.
They haven't mentioned anything about treatment.
That will be July fifth.
>
>Dear Barbara,
>
>Ketoconazole is a drug used mainly to treat fungal infections. However,
>in higher doses it inhibits the formation of steroid hormones (such as
>cortisol and testosterone), and is sometimes used by specialists to
>treat Cushing's syndrome, which is due to long term high levels of
>cortisol. It has been used before in PCOS:
>
>1) Comparison of four different treatment regimes in hirsutism related
>to polycystic ovary syndrome. Gokmen O, Senoz S, Gulekli B, Isik AZ.
>Gynecol Endocrinol 1996 Aug;10(4):249-55.
>
>In this paper, the authors compared a low-dose combined contraceptive,
>cyproterone acetate, spironolactone, and ketoconazole. They found that
>ketoconazole was the most effective.
>
>2) Reduction of endogenous, ovarian and adrenal androgens with
>ketoconazole does not alter insulin response in the polycystic ovary
>syndrome. Vidal-Puig A, Munoz-Torres M, Garcia-Calvente C et al. J
>Endocrinol Invest 1994 Sep;17(8):647-52.
>
>This one showed a reduction in androgens, but no effect on insulin
>resistance.
>
>3) Low dose ketoconazole attenuates serum androgen levels in patients
>with polycystic ovary syndrome and inhibits ovarian steroidogenesis in
>vitro. Fertil Steril 1994 May;61(5):823-32.
>
>This one does what it says in the title - ketoconazole lowers androgen
>levels.
>
>There is a review about using anti-steroid drugs to treat depression:
>Treatment of depression with antiglucocorticoid drugs. Wolkowitz OM,
>Reus VI. Psychosom Med 1999 Sep-Oct;61(5):698-711.
>It says that although the evidence isn't great, there is some saying
>that agents like ketoconazole would alleviate depression.
>
>I don't know your exact circumstances, but Renee's advice about informed
>consent is excellent. If anything, I go further and would say that you
>should be informed before consenting to any treatment, whether in a
>trial or not. The liver toxicity with ketoconazole is a rare but
>serious risk, and you need to weigh up this risk with that of the
>benefits you would get from using the drug. I don't know what your
>cortisol levels are, but long-term raised cortisol leads in most cases
>to some very serious effects, such as osteoporosis. So discuss with
>your doctor exactly what the advantages and disadvantages are.
>
>Hope this helps,
>Sean
>(Medical student)
>
>At Thu, 20 Jun 2002, Renee wrote:
>>
>>Barbara,
>>Sorry, I have never heard of Ketoconazole, and know nothing about it.
>>
>>Did you tell the physician about your previous experience with that drug?
>>Also, your history of hepatitis (was it type A?) may be a caution for a drug
>>with potential liver complications, though I don't know how much of a risk it
>>would be, versus a person without that history.
>>
>>If there is a "group of 12 women," it sounds like some kind of a trial. I
>>don't know the standards in Canada, but it's probably similar to the US, where
>>you have to provide "informed consent." That means that you know what is going
>>on, you know the risks of participating and not participating, and you have
>>the right to pull out any time.
>>
>>If you're uncomfortable with this drug, from your past history and your fear
>>of the potential side effects, then you really should talk to the doc about
>>it. Ask if there are other ways to achieve his goals.
>>
>>Sorry I couldn't be more help. Maybe someone else knows more about it.
>>
>>Renee
>>
>>"Barb C." wrote:
>>>
>>> Hi Renee,
>>> Seems I am caught in a catch 22 once again.
>>> I will try to make this short,as you know of my health problems.
>>>
>>> In November I was tried on Ketoconazole for a short duration to lower my
>>> testosterone and my cortisol.I stopped this medication abruptly,as it
>>> was causing me terrible stomach problems and vomiting and I could not
>>> stand it.
>>>
>>> Now,since I have seen this new specialist that is conducting trials(is
>>> affiliated with the last doctor that tried me on ketoconazole),put me on
>>> 200mgs of ketoconzole daily at four p.m daily.This is all being done at
>>> the teaching hospital here.
>>> I do not think this is a controlled trial/study-but there are twelve
>>> women in the group with elevated testosterone,hirtuism and cortisol.
>>> He claims that it will give my adrenals a break and lower my blood
>>> pressure etc.
>>> Now..the question is:Do I start to take this?I have heard it to be very
>>> hard on the liver and has caused liver failure..this was the first thing
>>> I read on the health watch from my pharmacy.According to my recent liver
>>> function tests-my liver was healthy and I would like to keep it that
>>> way,as I had elevated billirubin and mild hepatitis in '99.I was on
>>> several different medications.
>>>
>>> I am at witts end,as I have really lost a considerable amount of faith
>>> in the doctors.
>>> He also said that women with these problems have depression and
>>> ketoconazole will alleviate this.I have done as much research as I can
>>> on the trials of keto and I don't think any have any validity.
>>>
>>> He claims that the cortisol is stressing my whole body out and that is
>>> reason for the many conflicting symptoms that I have.
>>> Can you make any suggestions before I make my decision to either take
>>> this medication or drop out of this.
>>> I feel like a rat being experimented on.
>>>
>>> Thanking you much in advance.
>>>
>>> --
>>> Sincerely,
>>> Barb C.
>>>
>>--
>>--------------
>>Renee Cordrey, MSPT, MPH, CWS
>>
>>---
>>Dwell in Possibility.
>>--Emily Dickenson
>>
--
Sincerely,
Barb C.
![[ PCOS Discussion Forums ]](../../images/pcos_at_obgyn.gif)