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

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

jayxie
jayxie

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

27 Replies
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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!

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

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

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
csak
in reply to SongStream

You are right Addison‘s disease is a lot better manageable than the neurological part of AMN. For me Addison’s and Hypogonadism are still a big burden tough — I can‘t sleep properly, have no energy, feel weak and basically all the embarrassing stuff of Hypogonadism, but also weird symptoms like tachycardia, breathing issues ... I think, my hormonal levels also have a big impact on my mental wellbeing.

I once read about a Swedish study, were adrenal insufficient people were more likely to have cardiovascular disease than the normal population.

I hope, you guys do well on this new promising treatment, maybe it can arrest the progression of the disease altogether! And hopefully younger people can be saved from all this bad stuff.

SongStream
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.

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

.

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

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.

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

True. AMN is whack a mole.

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.

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

csak
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 in Austria, they just told me to go to a hospital if I beliefe I run into or have an adrenal crisis ...

SongStream
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
csak
in reply to SongStream

Sorry, for accidentally spreading misinformation — 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 and stuff ...

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
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
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
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
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
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
Equinney
in reply to SongStream

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

csak
csak
in reply to Equinney

Thank you, for caring about me.

I from Austria; I feel like this is a third world country when it comes to health care quality, and then I or anyone else must have a rare disease in this place... I wonder about people, suffering from rare diseases, who live in real third world countries, when the quality is so bad here in a supposedly developed country.

I know, this is why I‘m so upset living in this backwards country. I had been to several endocrinologists — in Western Austria — „even“ to two endocrinologist from two different University clinics, but none of them (all working at hospitals) prescribed it (I wonder, if this injections are even available in Austria. I have never heard any doctor talking about it and I had visited a lot of doctors. Or I‘m having really bad luck with them.). At the last appointment (which was very disappointing), I tried to „force“ (with reasonable arguments) him to prescribe it to me, then he asked me, where I had that information from and told them, that I had read about this on the Internet and they were like „Oh, Dr. Google, you know, is not a real doctor“ and others just told me that this is not necessary, I‘m powerless, it is really Kafkaesque ..

I have to travel abroad anyway, because of other health related problems and I will try to get this injections there.

I was also hospitalized because of Addison’s disease and no one told me about that option, I wouldn’t be surprised if the health problems I‘ve now are due to longstanding medical mistreatments.

It is so frustrating, I actually wonder if they are intentionally playing with my life or they just don‘t care enough (Here in Austria, Doctors get a lot of protection when it comes to medical errors, trials are getting delayed, patients and their families are told that they would lose anyway, if they are not accepting an out-of-court settlement [which is usually really low, and medical errors are a big taboo here]), and they are always getting told that they will be worse off if they don‘t accept the hospital/insurance deal, no one is going to excuse for what they did.

I refuse to believe, that they don‘t know about this; I mean two of them publish regularly in academic endocrinologist science magazines (I had looked their names up on the internet), that was why I originally scheduled an appointment with them, because I thought they could help me ...

csak
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
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
csak
in reply to KennyInPA

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

csak
csak
in reply to SongStream

The combination of Adrenal Insufficiency and Hypogonadism is cruel, I rather had another combination of hormonal diseases. (Some of my pituitary hormones are way outside the normal range (Prolactin, GH, ACTH, _LH, FSH_ [even on TRT]) and SHBG is really high if I remember correctly and so many other levels are off, oh well ...

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