Hello, everyone, how is the min-102 trial going,

[jayxie]

Hello, everyone, how is the min-102 trial going, can the participants share it, what are the changes in the body, thank you

[KennyInPA]

I know some participants have completed the two year part and are onto the extension period. I go to the site next week for 18 month testing.

I can't report anything new since the last time I popped in. Weight gain has stayed with me, although I started hydrocortisone supplements right at the same time, I'm sure that didn't help my situation. Nothing bad or worse to report. Looking forward to the end results for sure!

[SongStream in reply to KennyInPA]

Had you changed your corticosteroid to hydrocortisone for Addison's?

[KennyInPA in reply to SongStream]

I actually was on hydrocortisone for Addison's, a very low level. My new endocrinologist said it was too low and tripled the dose.

[SongStream in reply to KennyInPA]

Wow! So glad it was caught before you had a crisis. You know, I've been on Addisonian boards and lots of people have trouble with this alone. With AMN, Addison's is so doable and a breeze compared to AMN's whack a mole symptoms, albeit, fatigue is compounded.

[csak in reply to SongStream]

You are right Addison‘s disease is a lot better manageable than the Long-term neurological conditions of ALD/AMN. For me Addison’s and Hypogonadism are still a big burden tough — I can‘t sleep properly, have no energy, feel weak, … I think, my hormonal levels also have a big impact on my mental or emotional wellbeing; I wish that was the real problem, because otherwise years of mental health prophylactic therapy sessions for disability, chronic illness, being avoided as visibly disabled and young, and at the end of my sessions dealing with pain — sadly only helped me better understand or manage me emotionally better, as best as I can. But it did nothing for the pain I feel everyday.

I hope, you guys do well on this new treatment.

Maybe younger people could be protected from getting so far in progression.

[SongStream in reply to csak]

I was diagnosed with Addison's at 17 and 20 years later after heavy bouts of fatigue learned that 15 m.g. of hydrocortisone wasn't enough. I'm now at 20 m.g. and won't go higher unless the need arises due to osteoporosis. Hypogonadism was diagnosed in my 30's. Gentleman, testosterone is essential for bone density as well.

[KennyInPA in reply to SongStream]

Sadly I wasn't informed enough about Addisons, other than here take some pills!

I made a video about it the other month how I think I had an Addisonial Crisis. I see my endocrinologist next week in Boston to discuss

.

youtube.com/watch?v=zpcIA_F...(Not working as expected?)

[JasonHarnum in reply to KennyInPA]

shouldn't the doctors have 'informed' you as to the risks?

[KennyInPA in reply to JasonHarnum]

My original endocrinologist was very much not informed and did her best with what her internet research could provide. The new one seemed since everything was ok, nothing in depth was ever spoken to me. I think it had to happen to finally learn more about the risks. You get so focused on AMN and those issues, you forget about the other side.

[StevenSims in reply to KennyInPA]

Hi Kenny,

I've lived with Addisons for 17 years diagnosed 7 years before AMN, listen to your body if you feel unwell take extra! I sometimes take 4 times the dose! You shouldn't have weight gain as you're just replacing what's not being made!

Take it easy! All the best

Steven

[SongStream in reply to KennyInPA]

True. AMN is whack a mole.

[SongStream in reply to KennyInPA]

You know, Kenny, we have 2 rare diseases in 1. Not many endo's are familiar with Addison's and we are not getting the essential care. Be sure to wear your medical alert.

[KennyInPA in reply to SongStream]

Always, I have an adrenal insufficiency one as a necklace. Probably best thing to have in our situation!

[csak in reply to KennyInPA]

Do you have an emergency cortisone pen (in case of an upcoming Adrenal Crisis)?

I read about a woman living in the US, she runs a blog about AD (clearlyalive or something), and she always had an emergency pen with her, in case she was slipping into an adrenal crisis (now I believe she has a cortisol pump and uses that to insert more cortisone directly into her bloodstream [I wasn‘t on her blog for a long time, tough]).

Here, where I live, they just told me to go to a hospital if I belief I run into or have an adrenal crisis ...

[SongStream in reply to csak]

There is no such thing as an emergency pen. It is an injection. My endo prescribed me the the syringe and solution but I live close to a hospital. However, I've been thinking lately how deadly the flu can be since I live alone and not lucid when very ill. Here's the injection info: addisoncrisis.info/emergenc...

[csak in reply to SongStream]

Sorry, for accidentally mixing application methods up — I’d thought, she was writing about something like an Epi Pen, but for cortisone, but now, as you say it, she must have written about injections.

It would be kind of nicer, right, to just use a pen instead of a needles.

I think, I remembered the word “pen“, because of the blog-entry from clearlyalive:

clearlyaliveart.com/2016/06...

I hope, you stay safe.

Maybe you can have regular phone calls or text messages scheduled at a certain time a day, so if something is off, someone could look after you.

[SongStream in reply to csak]

There has been a discussion on Addisonian boards about the manufacture of an Epi pen. I can see this in the future.

[Equinney in reply to SongStream]

Thankfully my wife was an ER nurse. She has had to give me a couple of SoluCortef injections. I have had to give myself 2. Thankfully my Hydrocortisone dosing reached a correct level for me. I do not hesitate an injection if I do not have extra tablets with me. After 2 crisis I can feel when I’m getting out of sorts. I also try to keep something like peanut butter crackers or something sugary around for that time too. A soda of some kind is wonderful, usually I’m a water only person. With a crisis our blood sugar tends to drop also to dangerous levels. I may get some glucose tablets to keep in my pack too.

[SongStream in reply to Equinney]

I think we have a relative low blood sugar at times as I tend to get worsening fatigue and irritability which is diminished after I eat.

[Equinney in reply to csak]

With a severe crisis there may not be time to get to a hospital. Need to keep SoluCortef and some extra Hydrocortisone tablets with you. And wear a medical alert bracket/necklace.

NADF.us has some good info on that

[SongStream in reply to Equinney]

My medic alert indicates "Adrenal Insufficiency. Addison's disease. Takes steroids. Call immediately. After reflecting on this matter, I ordered my emergency injection kit. Make sure you always have a supply on hand for earthquake preparedness, etc., too.

[Equinney in reply to SongStream]

Yes. Same wording. Mine is also engraved “has injection” and my wife’s phone number.

[csak in reply to Equinney]

Thank you, for caring about me.

[csak in reply to KennyInPA]

Sorry, as SongStream corrected me, there are only cortisone injections available — I thought of an Epi Pen, when I was writing it; because you mentioned to have scheduled an appointment next week, I thought, you could ask them about that.

I think, I had remembered the word “pen“, because of the blog entry from clearlyalive:

clearlyaliveart.com/2016/06...

[KennyInPA in reply to csak]

I definitely will be talking to them then! I used to have one but it expired after no use and I had no clue what it was for haha

[csak in reply to KennyInPA]

Definitely a good idea :). Oh, this injection stuff probably expires fast? This could one day be lifesaving.

[csak in reply to SongStream]

The combination of Adrenal Insufficiency and Hypogonadism is cruel. (Some of my pituitary hormones are way outside the normal range (Prolactin, GH, ACTH, _LH_ [also on Testosterone gel]) and SHBG and other levels are off, oh well (could provide my levels :)) ...