Endocrinologist?

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Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/10/2012 11:36 AM (GMT -6)   
Have any of you with Lupus diagnosis been referred to an endocrinologist due to the adrenal glands becoming affected by prednisone?

I think prednisone has had a permanent effect on my metabolism and temperature controls (always too hot or too cold) and am wondering what might be helpful in getting back to normal.

{Wait and see doesn't seem to work, I've been OFF prednisone totally for over a year -- only 2 exceptions with 10-day dose packs.}

Hope everyone is having a good day!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Post Edited (Lynnwood) : 5/10/2012 11:01:58 AM (GMT-6)


oreo11
Regular Member


Date Joined Feb 2011
Total Posts : 399
   Posted 5/10/2012 8:34 PM (GMT -6)   
 
 
Hi Lynnwood,
 
       How funny you should mention those symptoms.  I am still on Prednisone (low dose at 10mgs per day) and I have been on the medication for a long time.  I have been noticing that I can't seem to keep warm, especially lately.  At first, I thought that maybe it's an age thing, but then I noticed that I am even cold when everyone else is comfortable.  I did get checked out for thyroid and it's not that.  I know that Prednisone can thin the skin (so can age, and I am almost 60), so I wondered if that was part of the problem.  I carry warm clothes in my car, so that if I get too cold at work, like I did today, I can always layer up.  Drinking something warm/hot helps to warm the insides and then I also feel better....even hot water does the trick!!!  I also know that I have trouble everytime my doctor goes to lower the Prednisone, so maybe my adrenal is sluggish.  And there might be a chance for the temperature intolerance.  I also do not do well if it's too hot inside or outside.  At least when you're cold, you can layer up, but there's only so much you can take off when you are too hot!!! cool

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/13/2012 9:38 PM (GMT -6)   
Yes it IS funny you should mention this, as I am due to see an Endo myself June 6th because I've been on Prednisone since Feb. 2011 and the 3 times I've tried to come off it I've had adrenal issues. They do not want to work at all. I've had 2 very low cortisol levels as well and the last one I wasn't even trying to taper. I was on 7.5mg physiologic dose of Pred and had to up it to 10mg. So, being 24 and having Lupus my rheumy is refering me in hopes of finding a way off this mess since I'm on MTX since a month ago as well. Hope we get some answers! Keep us posted.

-LadyBug
*LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
Plaquenil-200mg 2x/day
Prednisone-7.5mg 1x/day
Methotrexate- 2.5mg 3pills 1x/week
Keppra-750mg 2x/day
Daily Vitamin-1x/day
Folic Acid- 1mg 1x/day
Protonix 40mg 1x/day
Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
Vit. D 800IU's 1x/day
Lyrica- 75mg 1x/day
Flonase 50mcg 2 sprays each 1x/day

Wanna know my story, just ask!

*Lord_Walters_Lady* <3

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/13/2012 9:43 PM (GMT -6)   
By the way I have ALWAYS had temp issues as well. Both hot and cold but hot is worse especially heat combined with sun! I can't function. I also have lost weight on prednisone rather than gain any at all. I'm only 96lbs. Thyroid has been checked along with many other things numerous times. Only things that tend to show up are low complements from lupus, low cortisol and the symptoms. My rheumy thinks I'm having a mix of prednisone withdrawals, adrenal insufficiency and lupus flaring. UGH. Anyway, it makes me wonder if my adrenals weren't screwed up before the prednisone because i've always had these symptoms. If you look up adrenal disease it fits my bill...before and after prednisone...how about you guys?
*LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
Plaquenil-200mg 2x/day
Prednisone-7.5mg 1x/day
Methotrexate- 2.5mg 3pills 1x/week
Keppra-750mg 2x/day
Daily Vitamin-1x/day
Folic Acid- 1mg 1x/day
Protonix 40mg 1x/day
Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
Vit. D 800IU's 1x/day
Lyrica- 75mg 1x/day
Flonase 50mcg 2 sprays each 1x/day

Wanna know my story, just ask!

*Lord_Walters_Lady* <3

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/13/2012 10:15 PM (GMT -6)   
I wonder if this will happen to me?
I've been on inhaled steroids for many years for my asthma and tomorrow I start weaning off them.
Joy

Butterflake
Veteran Member


Date Joined Jun 2006
Total Posts : 1650
   Posted 5/17/2012 7:27 AM (GMT -6)   

Interesting thread. I was on...get this...300mg of prednisone daily during my last hospitalization in March. Upon discharge I was put on a taper starting at 30mg and I'm now down to 15mg. It's been quite a ride.

Dr. Wallace's Lupus Book says the adrenals only kick in if one is on less than 7 mg of prednisone. I hadn't considered an endocrinologist to see if my adrenals have shriveled up and died, but it sounds like a good idea. I frequently go thru bouts of hot-cold, hot-cold all within a matter of hours, but I always thought it was just part of lupus. Don't know if I'm ready to see an endocrinologist Lynnwood (just another doc for me to see), but I'm interested to see what you find out. Love ya, Butterflake


MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/17/2012 9:14 AM (GMT -6)   
It can be life-threatening if the adrenals do not work the way they are supposed to and you are not on enough supplement. You can literally go into shock....here's some things for everyone to read up on...

http://www.sciencedirect.com/science/article/pii/0002934373901940

http://www.digitalnaturopath.com/cond/C17649.html

My rheumy told me due to trying to come off prednisone 3 different times and this last time having to increase it even staying at 7.5mg because my cortisol was so low that I have what she thinks is a combo of Lupus inflammation, adrenal insufficiency and steroid withdrawal symptoms. I don't get in to the Endo till June 6th though. She started me on the MTX about 5 weeks ago. I'm thinking at this point my adrenals aren't working although I'm not too sure it's due to prednisone because i've only been on it what will be 2 years in february. I guess it depends on the person but I have fluctuated in doses multiple times but always tried to taper. However, I still believe perhaps this is due to some potential autoimmune adrenal disease due to the symptoms even being on prednisone. You can have Autoimmune Adrenilits as well....I really want to get this figured out!!
*LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
Plaquenil-200mg 2x/day
Prednisone-7.5mg 1x/day
Methotrexate- 2.5mg 3pills 1x/week
Keppra-750mg 2x/day
Daily Vitamin-1x/day
Folic Acid- 1mg 1x/day
Protonix 40mg 1x/day
Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
Vit. D 800IU's 1x/day
Lyrica- 75mg 1x/day
Flonase 50mcg 2 sprays each 1x/day

Wanna know my story, just ask!

*Lord_Walters_Lady* <3

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/17/2012 9:21 AM (GMT -6)   
Here's some more links so you have an idea!:

http://arapaho.nsuok.edu/~castillo/Addison'sdisease(autoimmuneadrenalitis).html

http://jim-lowrance.suite101.com/diagnosing-and-treating-addisons-disease-a197886

Hope ya don't mind all my posting, I really think this is what is going on with me and I want others to be aware too so maybe they can get help before it's too severe! And as we all know AI disease usually occurs in multiples so it would make sense.
*LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
Plaquenil-200mg 2x/day
Prednisone-7.5mg 1x/day
Methotrexate- 2.5mg 3pills 1x/week
Keppra-750mg 2x/day
Daily Vitamin-1x/day
Folic Acid- 1mg 1x/day
Protonix 40mg 1x/day
Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
Vit. D 800IU's 1x/day
Lyrica- 75mg 1x/day
Flonase 50mcg 2 sprays each 1x/day

Wanna know my story, just ask!

*Lord_Walters_Lady* <3

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 5/17/2012 7:28 PM (GMT -6)   
Okay, here's a thought....
Monday I started weaning on my inhaled steriods for my asthma. I had been on them for 12 years (I think???). Tuesday I woke up feeling like my knees were going to give out. Rash all over my face. Hurting all over and very fatigued. Everyday since I've felt worse...

Today my legs are swollen and I have red rashes from my mid-calves down to my ankles on my shins. My back is so tender and my hands are shaky.

Those have experienced steroid withdrawl does any of this sound familiar? Or am I just having a bad flare?
Joy

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/18/2012 9:14 AM (GMT -6)   
Yes couchtater that's exactly what it sounds like..not only does steroid withdrawal mimic lupus flaring itself but it also can reactivate the overactivity of your lupus because you don't have the steroid level in the body as you did before. It is probably a combination. My rheumy told me mine is a combo of lupus inflammation, steroid withdrawal and adrenal insufficiency. I'd get to your dr asap and get it figured out! Best wishes and God Bless.

-LadyBug
*LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
Plaquenil-200mg 2x/day
Prednisone-7.5mg 1x/day
Methotrexate- 2.5mg 4 pills 1x/week
Keppra-750mg 2x/day
Daily Vitamin-1x/day
Folic Acid- 1mg 1x/day
Protonix 40mg 1x/day
Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
Vit. D 800IU's 1x/day
Lyrica- 75mg 1x/day
Flonase 50mcg 2 sprays each 1x/day

Wanna know my story, just ask!

*Lord_Walters_Lady* <3

Lynnwood
Veteran Member


Date Joined May 2005
Total Posts : 7723
   Posted 5/18/2012 11:19 AM (GMT -6)   
As the Original Poster for this thread, can we please get back to the topic? That is,

Has anyone consulted an endocrinologist, in particular for help with some of the wild temperature changes we often have? If so, what were you told, what results did you have?
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING-LUPUS & LUPUS-RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

MissLadybug
Regular Member


Date Joined Oct 2008
Total Posts : 261
   Posted 5/18/2012 2:51 PM (GMT -6)   
I had posted earlier on that I have yet to see the Endocrinologist..made the appointment over a month ago and the soonest they could get me in was June 6th...so when I eventually get there and they start doing all the testing, etc I will let you know! Sorry I couldn't help you anymore than you could help me at this point lol
*LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
Plaquenil-200mg 2x/day
Prednisone-7.5mg 1x/day
Methotrexate- 2.5mg 4 pills 1x/week
Keppra-750mg 2x/day
Daily Vitamin-1x/day
Folic Acid- 1mg 1x/day
Protonix 40mg 1x/day
Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
Vit. D 800IU's 1x/day
Lyrica- 75mg 1x/day
Flonase 50mcg 2 sprays each 1x/day

Wanna know my story, just ask!

*Lord_Walters_Lady* <3
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