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Mommyof1
06-06-2012, 01:18 PM
So, I went to see the Endocrinologist for the first time today.

She took my history after the nurse did my BP and HR,etc.

It was really just an assessment at this point because being on 10mg of Prednisone/day for my weight(96lbs)that is like 20x too much steroid for me at my weight. So she switched me from Prednisone to Hydrocortisone. She is going to slowly try and taper me down with that. She said either way I have Adrenal Insufficiency but we will have to wait and see by the end of August hopefully if I can taper by then, whether or not I am Primary(Addison's) or Secondary(Due to meds.) She seems to think it is going to be Primary since I already have Lupus and it too is autoimmune in nature. No well to tell though unless we do an ACTH Stimulation test which cannot be done on such a high level of steroid.

She did not understand why I have consistently lost weight while on the Prednisone though. It seemed puzzling to her.

She also asked about my seizures and asked if my Rheumatologist thought it was from Lupus Cerebritis. Well, I told her I'm not sure because while they have done MRI's etc that were negative they have never actually said yes or no with it being possible. LOL

She said any type of symptoms such as rash, mouth ulcers, etc would not be considered Adrenal Insufficiency or Crisis so if it were something more vague like fatigue that could be possible. She also said if I start having frequent nausea or pain or vomiting that it could be adrenal crisis and I need to get to the ER ASAP. I also have to order one of those medical bracelets or necklaces to wear indicating Adrenal Insufficiency in the event of a crisis. Guess I'll get one made up that Says SLE, Epilepsy and Adrenal Insufficiency lol....ugh....

On a side note, I just finished 10 days of Cipro Monday for Sinusitis and I woke up this morning with another scratchy irritated throat. I have little ulcers in there due to the MTX which I take Tuesday nights so I was wondering if that could cause the throat symptoms? This is the way the Sinusitis started a few weeks ago though so I can't tell at this point.

Oh, speaking of infections...I was also told that around the time of infection I have to double my steroid dose for 48 hours so that I do not experience adrenal crisis and then resume my normal dose after the 2 days. She's having me take the dose split into 2 times a day and the night dose will be early around 4pm so I am not to be kept up at night. Hopefully it will help me sleep without having to use sleep meds! I woke up randomly last night at 1am and couldn't sleep so I took a shower and finally went to sleep around 2:30am.

If anyone else has these issues and can relate or wants to talk let me know!

*hugs*

-LadyBug

chikititalinda
06-06-2012, 01:28 PM
Girl, seems like you're going through it. on another note I wish I had your problem of loosing I have the opposite. You say Wanna know your story, ask. I'm asking lol

SleepyInSeattle
06-06-2012, 04:24 PM
Wow - that's a lot to deal with! Hopefully they can get you on track soon....

I know some people have a very hard time with Cipro - years back my husband took it for a sinus infection and almost died - he came close to being in liver failure and also his white cell count crashed so hard they almost didn't know what to do. Apparently some people are REALLY sensitive to it and can't take it. Reactions can be weird and vary from person to person.

Also of course with so many meds and A-I diseases and so on, it can be nearly impossible to sort out what is a symptom or side effect of which thing.

Everyone's different, but I can tell you I have been on 60mg of prednisone a day for the last 5 weeks, 50mg/day last week and 40mg/day this week (they're trying to get me off of it), and I lost almost 18lbs. Some of it was stress, I'm sure...but I have not been hungry - if anything, my appetite has decreased, and my energy levels have been up. I take it all in the morning, and mostly sleep okay....I have had a few nights where I am just AWAKE for an hour or so in the wee hours of the morning, but overall I'd say I am sleeping much BETTER than I was before treatment.

As they transition me off prednisone I am ramping up Mtx - on that for the first time and so far so good.

These things are so complicated, and of course everyone reacts differently. But no, you are not the only one to lose on prednisone. But it does sound like you can't spare the weight - I could. I shouldn't lose more than another 10-12lbs, but I won't miss it if it goes away! :-P

Mommyof1
06-06-2012, 06:32 PM
Girl, seems like you're going through it. on another note I wish I had your problem of loosing I have the opposite. You say Wanna know your story, ask. I'm asking lol

I guess we're all going through it just different versions of "IT" lol

As far as my story goes, are we talking from the beginning with everything or just the weight loss part? lol.... Feel free to PM or email me and I will give you the full story as it is wayyy too much to try and sum up on here lol

Mommyof1
06-06-2012, 06:37 PM
Wow - that's a lot to deal with! Hopefully they can get you on track soon....

I know some people have a very hard time with Cipro - years back my husband took it for a sinus infection and almost died - he came close to being in liver failure and also his white cell count crashed so hard they almost didn't know what to do. Apparently some people are REALLY sensitive to it and can't take it. Reactions can be weird and vary from person to person.

Also of course with so many meds and A-I diseases and so on, it can be nearly impossible to sort out what is a symptom or side effect of which thing.

Everyone's different, but I can tell you I have been on 60mg of prednisone a day for the last 5 weeks, 50mg/day last week and 40mg/day this week (they're trying to get me off of it), and I lost almost 18lbs. Some of it was stress, I'm sure...but I have not been hungry - if anything, my appetite has decreased, and my energy levels have been up. I take it all in the morning, and mostly sleep okay....I have had a few nights where I am just AWAKE for an hour or so in the wee hours of the morning, but overall I'd say I am sleeping much BETTER than I was before treatment.

As they transition me off prednisone I am ramping up Mtx - on that for the first time and so far so good.

These things are so complicated, and of course everyone reacts differently. But no, you are not the only one to lose on prednisone. But it does sound like you can't spare the weight - I could. I shouldn't lose more than another 10-12lbs, but I won't miss it if it goes away! :-P

Well I'm sorry your husband had such a rough time with Cipro! I didn't have any issues really at all as far as I know...but like you said who knows what it could've been caused by when it comes to symptoms and all this mess going on with us AI people lol I really can't spare the weight loss as I am already too thin for my height(5'2)and no one seems to know why i'm losing it. I'm still running a low grade temp for the 3rd day in a row so I'm thinking another flare and/or infection is coming on...this back to back stuff is getting annoying! If it is another infection I'm wondering if I'll have to up the prednisone like I would the hydrocortisone even though I'm on "too much" already? lol Ahh only I would have to make this even more confusing!! Just how my brain works I guess...Lupie! .....

Oh and perhaps this has something to do with my "trick" lol but I am allergic to soy and to barley...they are each others alternatives to food intake and of course food allergies create inflammation which triggers autoimmune which can cause weight loss...so in a nutshell I can't really eat healthy without A)starving myself since most things contain these ingredients or B)eating whatever the heck I want to and just not worrying about the allergy triggering part.....Not much else to do at this point!

SleepyInSeattle
06-06-2012, 06:54 PM
LOL...doc has me on wheat/gluten-free diet, and now dairy/beef (cow product)-free - between those two, there's only about 15-20% of the grocery store I can eat stuff from, and restaurants? FORGET IT! I am SO sick of salads....so right there is a bunch of weight loss too, I'm sure.

I'm also trying to avoid too much soy because of the estrogen-mimic activity it causes....so even a lot of meat/milk substitutes are out.

Aaaah, what we do for our sick, silly bodies... :-P

tgal
06-06-2012, 07:04 PM
I silently chuckled at your medical alert bracelet because mine would have to say all the same things. I tell people I don't have one because there isn't room for all that i would need.

Question... were they able to catch your seizures when they did the testing? During my "medusa" days I never had one. Of course I had one when they were putting the wires on and the day after they came off!

magistramarla
06-06-2012, 08:58 PM
At least the endocrinologist had confirmed your suspicions and is working to find out what is going on.
The problems that so many people have with prednisone makes me glad that I can't take steroids.
I hope that the docs can figure out a way for you to gain some weight. Have you been sent to a dietician?
You would think that someone like that could design a program for you.
Keep us informed about what you find out.
Hugs,
Marla

Mommyof1
06-09-2012, 08:48 AM
I silently chuckled at your medical alert bracelet because mine would have to say all the same things. I tell people I don't have one because there isn't room for all that i would need.

Question... were they able to catch your seizures when they did the testing? During my "medusa" days I never had one. Of course I had one when they were putting the wires on and the day after they came off!

Nope none of my seizures were ever caught on record lol....Lupus you are a meanie! haha

Mommyof1
06-09-2012, 08:50 AM
Hey Marla,

No I have not been to a dietician. I have thought about it but decided I might as well wait and let them get this figured out first so I have it squared away and won't have so many variables to deal with in knowing what works and what doesn't with what meds, etc etc lol

magistramarla
06-09-2012, 08:39 PM
I guess that makes sense, but at some point I think that you should request to be referred to a dietician.
LOL - when I was having a hard time gaining weight when I was pregnant with my son, I started craving cheesecake.
When the midwife chastised me for not gaining weight, I told her, "I'm eating cheesecake as fast as I can!"
I only gained 18 lbs with that boy, but he was the most roly-poly fat baby that I had!
Hugs,
Marla