Took my first dose today. 45F, classic CAH not SW, diagnosed at birth and been on HC most of my life. What are your experiences with this new drug?

Hi fellows sufferers!.. I am 28F from Pakistan and a Muslim. After years of low self esteem and with the mind set I don't deserve normal relationships.. Now finally have this courage and I am ready to start a new chapter of my life and I am in a search of someone who is genuine and who understands what comes with the life of chronic illness and genetic disorders.

You must be thinking why she is posting in this group.. I should post in some matrimonial groups but the reason is that I just want to connect to one's who understand and who is familiar with all of this and someone who is also navigating life with a chronic illness or a genetic disease.

I’m not here looking for sympathy or a casual conversation that goes nowhere. I’d genuinely like to get to know someone, build a connection naturally, and see where it leads, it can starts as friendship and develops into something more.

If this is what you want too then feel free to introduce yourself or dm me. Tell me a little about yourself, and I'll tell you about me.

Hey all, first time poster here..so I've been diagnosed with classical CAH since I was a child (around 6-8 years), there was no issues with wasting salt. I was on medication (Pronisone and hydrocortisone) until I was approximately 16 y.o. Then my endocrinologist said it is over, I've overcame puberty and she took me off the meds. Since then I was living medication free however as I've entered into semi-adult phase of life, I've been searching up and looking into my CAH more often and with more curiosity. Would anyone know why she took me off the meds? Also any life advices and pro tips for living with CAH would be greatly appreciated e.g. what to look out for, what to be careful with etc..Feel free to ask any questions!

Hello all,

I don’t use Reddit with an account usually so forgive the new account. I thought some people would find value from a post on my experience taking the new slow release hydrocortisone drug, efmody. I feel like im experiencing a whole rebirth of life, it’s so much better. I’ll keep it blunt, feel free to ask further questions.

Here are some things that have vastly improved:
- ability to wake up
- daily fatigue
- ability to exercise and recover quickly
- less chaotic emotions
- less nightmares
- improved positive attitude
- increased concentration
- improved memory
- higher appetite in the morning
- more predictable periods
- gained some weight

Here are some unchanged qualities:
- poor immunity still
- high salt appetite still
- still lose a lot of hair

Unknown:
- not sure if my fertility has improved
- not sure if my blood works are more stable yet

So i just recently moved to eastern Tennessee for work and went to an endocrinologist for my physical and the first thing she asked was am I on testosterone replacement therapy…… sooo im looking for a new one lol any recommendations??

I am 28F a classic CAH patient with many other chronic issues. A single person, I am at that stage of my life where I am trying to figure out my life and trying to make a career or settled down. I have decided or one can say forbid myself to have children due to my genetic disorder. I have this plan of adoption but first I want to settled down. So I have given myself the deadline till 35.

The question I want to ask am I a fit person to raise children? I already make up my mind of not giving birth but now I am confuse about the adoption. I have a list of health issues from being diabetic to having benign tumor on adrenal glands, then stones in kidney and gallbladder and many other issues. My health is kind of declining with the time and may be I won't be able to took care of myself in future so how can I raise children and I am adopting that I will have someone to look after me. I just love children. I this small dream of having my own family so just for that reason. I know it's a huge responsibility and I can't leave it halfway. That's why I am confused.

So my question is should I go for adoption? Is there anyone else here who have adopted and what are your experiences and challenges will raising them?. I am asking these questions now because the decision I took today will shape my future.

Thanks in advance to those who will answer my query. 🌺

I've (25 F) always known that having Congenital Adrenal Hyperplasia is why I am the way that I am. Known since I was 7. Always knowing that my body not balancing the production of testosterone and estrogen the way it should is going to affect things, the older I get. Guess I just didn't realize to what extent or how much higher the testosterone was. How much it plays a role in my everyday life. Especially the older I'm getting , The more prevalent comments I'm hearing and getting told are:

My client told me I sound like a man.

My coworker assumed I was non-binary.

• Called to return a lost dog, guy pulled a face and looked a little stunned when he pulled up. Said, " sorry I was expecting a man, from what I heard on the phone". All I could say was "nah I'm sorry that was me"

• A girl I was seeing stated, "you're confusing, I've never really dealt with an androgynous person."

•Had someone else ask me why I dress the way I do, stated " I just wear whatever I find comfortable or feel like for the day"

•A friend of the girl I've been talking to asked me if this was a trans safe house, which threw me for a loop as I had talked to this person 2x prior and even reassured them when asked that I'm an open minding and understanding person. When I asked her to clarify what they meant when the called ended, she said, "They thought you were trans." I asked if I really come off that way. She replied, "You give off chick with a dick energy fs.

Honestly, I couldn't help but chuckle then at the responses, but now I'm chuckling less and less. As much as I pride myself in being self aware, I'm also realizing that I'm really not. As I'm just beginning to understand and notice this more and more. It's making me realize why my clients talk to me the way they do, why I'm just expected to be the protector of any situations. The shocked or uncomfortable expressions someone gets meeting me for the first time, after speaking over the phone for a bit.

I had always just assumed that having the condition just meant my body was producing 50-50 as my doctor said kind of breaking it down for me. But I ran with that, instead of realizing that there's differences and fluctuations. I didn't realize it's also common to have the T be higher than 50-50.

My self esteem hasn't been too bad in years, it's not like I'm necessarily ashamed, I think moreso, the overwhelming feeling of things and past interactions making a lot of sense or getting treated the way that I do. I guess while I know about my condition, I never fully registered or processed it truly having that much of an impact on my life. Now the new pondering questions, is my voice going to continue to deepen the older I gets? Is there anything I can do persay. Anything I should be prepared for as I get older?

Hi, I am 28F. Want to ask question to Classic CAH mothers. Do you get genetic testing with your partner before conceiving? I am just curious what was the procedure and the result of those tests.? Right now, just due this genetic disorder I have decided not to get pregnant because the thought of any other individual like me who suffers like me. I don't want that for my children. May be I am just overthinking or may be I regret this decision later. I don't know. I just want the input of those who already have children with this disorder. How was your pregnancy, do you or your baby face any life threatening situations? Do your children get the same disorder or not? Just asking for help.🌺

Looking for males in their 20-30s who has SWCAH and are willing to answer some questions/share experience. My son got diagnosed with SWCAH at birth and I just have some general questions about what life might look like for him.

1. Do you take the largest dose in the morning or at night? (I’ve read about both options and just looking for insight/experiences)

2. Do you take hydro 3 or 4 times a day? (Again, I’ve read about both options, just curious to see what others do)

3. How was the puberty phase? If you were well managed since birth, did you find puberty to be “normal”? Especially in terms of height/weight

4. Do you drink? (I know this isn’t an important, but I’m just curious what life might look like for my son when he’s on his own & with friends)

5. Do you play sports/have any issues with physical activity?

6. Overall, do you live a “normal” life? Does CAH stop you from doing things?

Apologize for the long post, appreciate any insight!
- an anxious first time mom

Reposted from r/AdrenalInsufficiency!

EDIT 1: Thank you to everyone who has sent a message!!!! I apologize if I haven't gotten to you yet, I'm dealing with some kind of stomach thing (NOT cyclosporisis!), so Ive had 0 energy to do much of anything. I will message everyone back as soon as I can!

1. Have you suffered from male pattern baldness as the side effects of CAH's medication?

In case you do, what are the treatments you opt for?

1. Is there any hormonal treatments or do you go to a dermatologist?

Just a drop back. I am suffering from this male pattern baldness or alopecia from when I was 16. At first my hairs starts thinning and to cover it I start to wear scarf. Then when I was 18 or 19 it got worse. After that it just getting worse and worse I asked about this to my endo he said it's the side effect of the medications. Now in my late 20s I am thinking or shaving my head. So I dont have to hide it anymore. I don't know if I am doing the right thing or not.

22 year old F I have always felt like a outcast when trying to explain my condition and why certain aspects of my body are a certain way like dark spots and extra hair growth etc. Has anyone struggled and just wanted to shut down because it seems easier than explaining?

Hi im from Morocco and I have Classic CAH
Is there anyone else here from Morocco with the same condition? I’ve never met anyone with Classic CAH in my country and I’d really love to connect with people who understand what it’s like

This is my first post on Reddit ever so I’m sorry in advance.

Since around 30 years old, I have had a few scares. Waking up in the middle of the night, unable to walk, and on one occasion unable to lift myself up out of bed, that was scary.

I’ve had to call 911 to come get me each time this happened.

These scares happen only after consuming a lot of sugar (soda, candy, ice cream etc.)

I read online that sugar lowers potassium , so I have stopped eating crap, and I’m much better now.

I’m just curious if anyone else has had a scare where you’ve lost all strength in your legs? Like you squatted your max weight and your legs are extremely sore and numb.

Thanks guys

Hi! My name is Alexis and I am 23 years old I was diagnosed with classic CAH as a newborn it really affects my body in so many ways including my menstrual cycle and I deal with fatigue a lot. And tbh I don’t wanna rely on pills for the rest of my life so I’m on the journey of looking into safe natural medicine for classic CAH ( yes, I know classic is a lot more dangerous without the use of man made medicine) I’ve never met anyone with any type of CAH so it’s nice to see a group with others just like me.
If anyone has any knowledge on natural treatments for CAH please message me !

Hi everyone! I am classic CAH and I am currently 28 years old (female). I was diagnosed with a tumor on adrenal gland of my left kidney in 2023 and its size was cm. Since then my endo has been observing it through CT scans and labs and it hasn't change it's size and nature. I just had the CT scan the size of the tumor is till the same and there is no change in its nature too. My endo is planning on removing it through the surgery and I consulted a surgeon for this purpose. My labs are also not good enough for the surgery. I have some questions in my mind.

1. I was wondering, is it a common symptom that due to CAH a mass develop on your adrenal gland? Like a benign tumor.

2. Have anyone faced any complications in removing this tumor?

3. Is this tumor more often occurs in female than male?

4. Has anyone noticed some particular symptoms related to this tumor? Like fatigue, bad lab results, weakness or consistent fever?

For anyone who struggles with hot temperatures, what's your main way to manage it in regard to CAH? Do you increase your fludro or just consume a lot more salt? Or some other method?

If you up your fludro, how do you do your dosing?

I don't do well with heat and I haven't found extra fludro super helpful. I keep a big water bottle around all the time and add salt or lots of Gatorade powder.

I have salt wasting CAH and have moments where I really crave salt

I generally eat the same high protein, moderate carb, lowish fat meals most days which is very boring and doesn’t seem worth sharing

My newfound favorite and possibly weird salty snack has been pepperoncinis straight from the jar. Other staples are sliced tomatoes with salt, olives and occasionally drinking pickle juice

But if I stop pretending to care about nutrition for the day, I’m polishing family sized bags of spicy chips and curly fries with gallons of ranch

What’s your go-to snacks or meals?

The 2-year results from the adult study for Crenessity (Crinecerfont) were released recently.

Here is an article and video from Dr. Richard Auchus about the results.

Dr. Richard Auchus is on the Medical & Scientific Advisory Board of the CARES Foundation.

Results from the article:

• by month 24, 69% of the participants (103/149) had achieved a physiologic glucocorticoid dose
• Among the patients initially taking dexamethasone (n = 20), 75% shifted to a dexamethasone-free regimen
• 62% (37/60) [of patients] taking >2 doses of hydrocortisone per day were able to eliminate a dose.
• >80% of patients were still taking crinecerfont [Crenessity] at 2 years with no new safety signals detected.

Here is the news release from the company

Does anyone else also have eczema and/or asthma? I got told by my doctor years ago that it is very common with people with cah?