An update

[Debbie C]

Well I saw the hand surgeon and he said that it was just a ganglion cyst and told me to wear a Flector patch and a wrist brace and come back in 6 weeks ,if not better he will cut it. Haven't done either yet..tried the brace buts its a pain..can't bend my wrist at all.
Then I have been having a hard time catching my breathe..I think I really over did it on my yoga plus the cold weather isn't helping, so the pulmy said in increase my pred to 30mg for 3 days then to 20 for 3 days and then 10 for 3 days......NOT. I called my rheumy at CC and she said she hates to go against his advise since he examined me and talked to me. I told her I just called the office and the secretary relayed the message and that he never saw or talked to me. She was a little pissed and told me to call him and tell him I have a very low tolerance to meds. and she suggest I see the pulmys at CC when I come up there. I told the pharmacy not to fill the order. But the idiot secretary at his office made the remark " you don't like pred....most people love it because it gives them energy " I told her that it also keeps you awake at night and why don't her and the dr. try it and let me know how they feel !
THEN...today I went back to the obgyn to go over my blood results. BAD.... my adreanal glands have completely shut down,thats why I go through withdrawal when I try to wean off. She said if I were to stop,it could kill me. My progesterone and testosterone are like non exist so she has ordered all this crap to start taking that should help with fatique, stress, and a lot of other things. She also told me to start taking folic acid again since that helps against blood clots.
I've had fun this week !!!!!!!!!!! I just want to go take a nap on the beaches of Bora Bora !

[debra]

Deb, no need of a different thread? Maybe do both? But we want you here, plus I just found someone willing to run with me to bora, bora!!! Deb, the dog, can't go there! So, you're discouraged, with good reason... The adrenal glands may now need daily help, if there truly depleted. I know of people who's bounced back and got on line, though, so don't be to discouraged, there... Did she check you're thyroid Deb? Cause this all being in sync with the adrenal glands, I would hope so? At some point they'll probably send for a acth, stimulation test, to see what you're body is doing with cortisol, time it, ect. It's a weird test, as it made me, start having palpitations, and breathing problems, so they stop, then monitor, then go more slow with the injection into the line... Deb, you may want to look into bioidenticle hormones, as opposed to synthetics, as they work better in my opinion, and the delivery system, saves you're body from having to break em down, ect... You have a compounding pharmacy make them for you, per the docs, instructions, then they meet with you, and go over everything and teach you how and when to apply, ect... They even do follow up calls, to see how you're doing... Deb, little advice? Be very careful with the testosterone! If you're married, or have a man, GOOD!!! Cause you're gonna really need him!!! Ha ha... Oh, the good ol days! Deb, keep us posted, please... Especially if you choose testosterone!!! I want details Deb!!! Deb...

[debra]

Deb, my friend, forgot to mention, the progesterone will help with fatigue, and SLEEP! If its the bio, I just talked about above... I wish I was still on this... Progesterone levels just plummet, as we go on in age... Notice, how I carefully worded that Deb? So, please Deb, look into that, when you get the other things figured out... Deb...

[Debbie C]

My rheumy at CC said I would be on pred for life anyway. She mentioned I could try to come off it but since I am not on anything else,if it comes back I could be in real trouble. My ent checks my thyroid and all is well there. And yes the pharmacy I go to is also a compound pharmacy so they should have everything ready for me Monday....Yippee !!!!!!!!! More sh** to take :(

Jana or anyone else have you been to the pulmy dept at CC, if so what did you think ?

[Jaha]

Deb C,
I see a pulmy for COPD, Dr Pichurco, he is top notch. He really explains how you tell the difference between Wegs on Cts and COPD and the difference in the symptoms. I have never found one there whom specialists just in Wegs. I really hope you find one that can sort things out for you. You will be in my thoughts and prayers.

[debra]

Deb, good... Wow, even compounding in you're pharmacy? Or I'm gonna guess, you go to a compounding anyway? Good, Deb... I'm moving! Jana, hello... Deb...

[mishb]

This sucks Deb, I'm sorry that you have to go this med path.

My sister in law has Addisons Disease and she has to take 100mg pred a day :crying:
I hope whatever it is that you have to take, works for you so that you never have to take those high doses of pred,

[Birdie]

I just want to go take a nap on the beaches of Bora Bora !

You may want to reconsider Bora Bora, Deb wrecked the place so bad that she even left... for Hew Hampshire.

[debra]

No....... How would I? No, just had to come back to the real world... Back to life, back to reality... Hello, there Birdie... Deb...

[Debbie C]

Jana,Thx for the drs. name . I will ask Dr. Langford about him. Let me know if you will be there April 13th !

Michelle, I feel so bad for you sister in law. I started out on 100 mg a day when first dxed. I think that would kill me if I had to do it again.

Deb,my pharmacy just expanded,they used to do compounding at their other location but moved everything into 1. They also got into selling organic food and all sorts of things. Its really nice there. I am going to talk to the pharmy about all this crap first,I have learned to trust them more over some docs.

Birdie,you are probably right, She probably did leave it a wreck with all her sleepless nights. I want to go see my Aussie friends anyway,Just need to hit the damn lotto !

Hope ya'll have a good day ...talk later

[debra]

Deb, this sounds cool... I gotta say, I trust my pharmacist, without a dought, more than all doctors, save one! Yes, is call him, before my own doctor... The pharmacist alerted me to a few different things, my doctor didn't even know... Take advantage of this guys! And its free! What's not to like there? Deb, good luck, with all of this, and I hope you keep the bio, progesterone in mind , especially... I used the cream, in the past, applied to you're wrist, then alternate with the thigh area... Enjoy you're weekend, Deb... Deb...

[debra]

Ya, ya... Typo, so very sorry... Me...

[Debbie C]

Has anyone every tried a supplement call Adren-all or Pregnenlone ? They are supposed to help your adrenal glands and also give you more energy and help with your mood. They were prescribed for me by the obgyn and the pharmy said she even takes them.

The adren-all is sold on Amazon for about $ 50.00 for 160 pills ( I think that what it was ) and there were a lot of great reviews on it. Just wondering if anyone has taken them .

[debra]

Hi Deb... I took pregnenlone, and raw adrenal, as well as other adrenal supplements in the past, as well as Dhea, because I have a hereditary cortisol problem. I'll say this, be careful. If you have a doc working with you, as did I, and monitor you're blood, I'm sure you'll be fine. I was not, because the hormones started going down the wrong pathways, ect. It started doing the exact opposite of what was intended, so... A time 2mgs I believe of dhea, for just three months pulled my levels 33 points over range, and it was a long time getting them down... But again have a doc, monitor you're levels, and be careful... Good luck, Deb! Deb...

[Debbie C]

Thx Deb, yea she also told me to take DHEA 5 mg. but my pharmy told me not to so I won't and she is also talking to her about that estrogen-progestion (sp ?) mixture cuz she wasn't to thrilled about me being on that with steroids. But do you think the problem was just with the dhea or the others. I hate to spend that much money on something I won't use but if it will help I will....the other Deb !!

[debra]

Deb, sorry my typo I just noticed, my phone rang, so couldn't fix it. Dab, it wasn't 33 points over it went over 300 points over!!! Deb, that's alot! Haha.. Deb, I thought I would grow a beard, and a penis! Haha... Deb, never again! The adrenal supplements i would do, but NO, Dhea, NO, preg, ect... We had a talk on the thread to know where about sea salt, and believe it or not, sea salt is incredible for the adrenal glands... Deb, keep posting on what you decide? Hope it all world out for ya... Just remember how powerful these are! Deb...

[debra]

Damn, typos! Deb, not Dab!!! Man I tell ya... Deb, also here's something interesting, I only took 2 and a half milligrams of the Dhea, for only a few months, and the numbers went scary, of the charts... Never forget the call from my endo, Deb, what on earth are you doing??? Are you taking extra? No! Exactly what we agreed on! Ok, well open you're window, and throw them out!!! Will do... So... The bio, progesterone, and bio, estrogen will help Deb... Wish I could have stayed on the p, without the e, but could not... Deb...

[Debbie C]

Deb, a few years ago I bought this Himaylain (sp?) salt inhaler because I saw it on Dr. Oz and was supposed to be good for your lungs. I showed it to my pulmy and he told me not to use it because you never know whats really in it. But I have seen websights that still sell it. I don't know how good it is since I didn't use it after that. I probably should have.he was probably worried he'd be losing money if it worked.

[debra]

Deb, my friend, that is exactly why he wanted you to stop... If $$ can't be made, well there ya go... Crazy huh? I love Himalayan sea salt! I have the pink, if you're interested I'll send you the websites... Deb...

[vdub]

My sister in law has Addisons Disease and she has to take 100mg pred a day
I think you might have misunderstood your sis-in-law, Mish. I have the "top-level" form of Addisons, i.e., panhypopit. My daily replacement dosage of cortisone is 20mg of hydrocortisone which is about a fourth the potency of pred. So, I could just as easily swap out my 20mg of hydrocortisone for 5mg of pred. I would guess that your sis-in-law was given 100mg pred when she was in a stress situation, such as surgery or even a mentally stressful situation. During times of stress, your body can easily need 300mg of hydrocortisone or the equivalent amount of pred. Below is a pretty good article on Addison treatment....
Medscape: Medscape Access (http://emedicine.medscape.com/article/116467-treatment)


You may want to reconsider Bora Bora,
As Rain Man would say "definitely reconsider, definitely".... Tahiti is where I had my first adrenal crisis and was medievaced back to Papeete. Of course, it didn't have anything to do with bora bora. Actually, it might be a good place to go, because you know for certain the hospital knows how to deal with an adrenal crisis. :-)

[mishb]

I will try to remember to ask her next time I speak to her vdub.

She has had it for many years (my nephew too) and last year at lunch when I took my 5mg, she said I take 20 times that each day :crying:

She never really liked to talk about it at all, she was in hospital for months.
The only reason she started talking was when we found out our nephew (her nephew too) was diagnosed. He was only 20 at the time.

Anyway, it all sucks :predrage:

How are things going with you vdub?

[vdub]

How are things going with you vdub?
Not terrific. Yesterday, one of my docs added 3 new drugs to my arsenal, but then took away 1 old drug, so that's still a net gain of 2. I'm well over 20 drugs a day now, but I've lost track and counting how many I have is no longer fun. Its getting a little overwhelming to load my pill minder each week.

I think spring will bring new distractions and renewed hope. In our part of the US, spring is only a couple weeks away. We haven't had any snow all winter and yesterday on the news they had a picture of the first buttercup found this year. That's usually a good sign for the beginning of spring. Next will be the robins. I've been out driving the MG around for the past couple of weeks. Driving around my 55 year old car is a lot of fun!

[debra]

Vdub, hi.. Vdub, just curious, have they ever tried florinef on you? Because of you're adrenal, involvement, I'd be surprised if this was not tried? Just curious... Enjoy you're car... Spring will be here fast enough... Debra...

[Pete]

I've been out driving the MG around for the past couple of weeks. Driving around my 55 year old car is a lot of fun!

It would be fun to put your MG and my ten year old Boxster together on some nice twisties. Enjoy!! We're still a couple months away from top down weather gets here...

[vdub]

Florinef wouldn't be of much help for my situation. Endocrine glands are almost all controlled by the pituitary with a feedback loop. In the case of the adrenal gland, it responds to the release of ATCH from the pituitary. Without the pituitary to release ATCH, the adrenal is effectively dead. The only endocrine gland that I think of off-hand that isn't in the pituitary triad is the pancrease, all others function solely based on pituitary involvement. No pituitary -- no endocrine system. Its a very complex part of the body.


your MG and my ten year old Boxster
Your little boxster would be the pants off my MG. At the time the MGA came out, it was a hot little car. Its only competition was the Austin Healey 3000. But, even a Geo Metro would beat it today. Its 1600cc engine is only producing 90 bhp and top speed is about 105 mph. 0-60 in about 13 seconds. Interestingly, though, it was made specifically to be raced. It was intended to be a race car that could be driven from home to the race track on weekends, but could also be used as a daily driver if you wanted. It is a very austere car -- no external door handles, no windows, a heater was optional. I think the horn was an option, too.

[Pete]

Who said anything about racing?? I auto crossed a few times to learn more about the car's handling at speed. I learned I really have to work hard to make the car break traction. Just backing off the gas gets it back in order. I live about 75 miles from the Hocking Hills in SE Ohio where there are some twisty roads with off camber curves, sudden drop offs, and short straights to set up for the next twist. I rarely get much over 50 mph or out of third gear, but it's still a blast!! :)

[debra]

Vdub, yes, I guess I meant in the beginning, before learning of the extensive involvement you had... Interesting Vdub... I wish you the best... Debra...

[debra]

Oh, and hello, Pete! Hope you're good... Deb...

[MikeG-2012]

Who said anything about racing?? I auto crossed a few times to learn more about the car's handling at speed. I learned I really have to work hard to make the car break traction. Just backing off the gas gets it back in order. I live about 75 miles from the Hocking Hills in SE Ohio where there are some twisty roads with off camber curves, sudden drop offs, and short straights to set up for the next twist. I rarely get much over 50 mph or out of third gear, but it's still a blast!! :)

Motorcycle owners and convertible owners know why dogs stick their head out car windows!! WOOF!

Pete, you made me sad reading about twisty roads. I can't wait to get my bike out!!

[Debbie C]

vdub ..sorry to hear they added to more pills to your regimine. Has your breathing gotten any better ?

We also lucked out here and haven't had hardly any snow. The crocuses are out and I did see a couple of robins the other day. It won't be long now, I think we will all feel better in the spring. I know I can't wait to put the top down on my car ( and even wash it ! )