I have 4 boys and my youngest two have CAH. They are 3years old and 1 1/2 years old. They both have SVCAH.  However, they are both on Florinef...each has a different dose.  I have been posting since my 1st CAH son was a week old.  In that time I have wondered many times what would happen if my sons stopped taking meds once they were out of my control.   I think it depends on what kind of CAH you have and how your body handles it.  First of all, you should discuss it with your endo.  It’s dangerous to discontinue meds, any kind, without knowing what could happen to your body.  I guess the worst thing that could happen would be that you could die.  The second I guess would be that you could come close to dying.  Why would you want to do that? If the meds having you feeling off, chances are you are on too much or too little.  Have them adjusted.  You don’t need to worry about growth or puberty since it sounds like you are passed that stage. 

I once talked to a lady who worked with many CAH patients and she said that she met many SV and NC CAH men who were not on any meds. They weren’t at death’s door but they did have fertility problems.  This is not to say that you would be so lucky as to not be on deaths door but again, I think it depends on how bad your CAH is. Remember, just because you have genetically SW CAH it doesn’t mean that you necessarily express it as SW. You could express it as a SV and vice versa.   Have you ever had a crisis? How were you diagnosed? Have you talked to your doctor and your family?

No one can keep you from doing what you want with your meds. I won’t be able to force my kids to take their meds either.  Really though, if you can get them right, why not take them?  I hope that my boys realize that somethings are just not negotiable. People with diabetes need insulin, people with high blood pressure need their pills, people with thyroid problems need their meds etc.... It’s just part of life.

If you take it as needed...well, I’m not so sure you would be able to tell. I’m not sure if taking it on a as needed basis would be enough to compensate for the stress your body would be in. I’m just guessing here though. Your best bet would be to ask a doc. 

Someday there will be a cure. Right now though gene therapy is years away and there are other promising studies going on that may yield some positive results. For now, steroid therapy is the treatment. I think the NIH has some other pills you can take in combo but you’d have to check with them.

Good luck. I hope you make the right decision. As a mom, I hope you stay on your meds. You are doing exactly what I fear that my boys will someday do.  It’s your life and your choice but hopefully you have a wonderful family who loves you and if you think of them, you’ll decide to keep taking those pills until a cure is found.

I know someone else mentioned this website, but if you goes to www.caresfoundation.org  you will get more info.

Sandra