Lost weight on pred, face not red, look and feel normal for first time in ages, Cushings?

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cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/18/2007 7:13 PM (GMT -7)   
Hi--
I actually lost weight on pred, even though I'm eating more and my pot belly is almost gone.  I don't look like a chipmunk anymore and my face is not red and I look like my old self.  Is this normal because of the disease going away or could it be that I may have a touch of cushings?  I've been tested but all the tests are goofed up because they didn't tell me they were testing for it and didn't tell me I had to fast and be there at 8am, so I'm one point above low normal at 11:55am for cortisol and ACTH low.  I think I have mild cushings after this last thing with pred.  I feel real good on 5 mg and wish I could stay on it.  Everyone has remarked on the sudden weight loss, pot belly gone and face not so fat.  It is truly amazing.  Is this just what happens in the beginning when you start taking prednisone every now and then?  I will take a pix for rheumie it is so dramatic.  Really amazing.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/18/2007 7:32 PM (GMT -7)   
Hurray Marji!!!

I took pred for a short time twice for poison ivy and then poison summac. I must say that I never felt better in my adult life. I hand dug every flower bed in our yard (LOTS of digging) and I worked like a man. I had no idea it was the pred. I thought I was just a natural gardener. Then . . . the pred taper was over and I was absolutely pooped and never could work like that again. Sad . . really sad. I hope your dramatic change stays with you and that you've found the silver bullet!!! Keep us posted.

I hope some of the others more familiar with pred can answer your questions.


Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/18/2007 8:00 PM (GMT -7)   
Thanks Rosie,
I started to feel pooped, then things just changed and I got slender, dropped five pounds, got my waistline back, which is amazing since I always look 8 months pregnant, so my waist line shrunk a ton and so fast. It all happened so fast, that's why I think maybe cushings? Or maybe just the disease was really hurting my guts. Thanks for the reply. I did get some real energy! i wish I could be on it all the time.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/18/2007 8:09 PM (GMT -7)   
Hi, Marji. The weight loss I experienced (8lbs.) when this lupus first really became active was from them draining the pleural fluid off of my lung. I didn't get prescribed the prednisone until afterwards, so I know it didn't come from the med. in my case. From everything I've read and from people in my local support group, I understand people tend to gain weight if anything while taking prednisone because of the increased appetite. I am glad you're experiencing some weight loss because I know you've mentioned wanting to do that previously. I'm not familiar with the Cushing's, so I can't help there. How much longer do you take 5mg prednisone? Do you slowly taper to none, or does it just stop after 5mg? Take care and hang in there,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/19/2007 9:32 AM (GMT -7)   
Marji,

My reaction to prednisone was the opposite of yours because I blew up like a balloon, and while I had never had a poochy tummy, I suddenly looked like I was pregnant. The more prednisone I take, the bigger my tummy gets and as I taper, it starts to go down. Taking pictures is a great idea. I'll be anxious to hear what your doctor has to say. Good luck!

Pat
Lupus, Rheumatoid Arthritis, Sjogren's, osteoarthritis, fibro, ibs, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/19/2007 10:49 AM (GMT -7)   
Thanks Pat and Sharen,

Usually, everything makes me gain weight. No one knows what this big belly of mine is, fat, water, organs, sclerosed tissue? No one knows. They don't care. All I know is pred made it go away so I think that it must be related to either the AI disease or cushings. My appetite didn't get bad, like it has in the past. Now I just take 5mg for two more days and done. I want to call the doc and stay on it. My gi stuff has come back full force and is very painful and the nausea and everything. Ugh. I did notice that my face skin seemed more transparent on the high dose and though less red, I didn't like that, like I could get more spider nevi. I wonder if the pred is helping my liver too, I know part of the swelling is that.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 9/19/2007 10:55 AM (GMT -7)   
Hey Marji . . . FYI . . . . my s-i-l has severe liver disease and she takes steroids to combat that issue . . . it did make her tummy go down for a while as it treated the auto-immune attack on her liver.

Whatever happened to your belly, I'll bet it was the steroid attacking something gone wrong. I bet you are onto something. I hope this helps your doc figure out what's going on with you.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/19/2007 11:54 AM (GMT -7)   
Thanks Rosie, I'm going to tell the rheumie and talk to the liver doc. I think you are right. I found out my liver dx has been upgraded from fatty liver to NASH non-alcoholic steato (fatty) hepatitis, which means active inflammation, so my last bx wasn't as benign as they made out and it means its progressive. Oh well, bad genes (I almost spelled it jeans!), boy I can tell the lower pred. I wish I could be on it all the time.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


sharentrials
Regular Member


Date Joined Jul 2007
Total Posts : 261
   Posted 9/19/2007 9:35 PM (GMT -7)   
Hi, Marji. Do your liver doc and gi doc know how the prednisone makes you feel? Are they also truly aware of everything you deal with on a regular basis? I can't remember who you said actually prescribed it for you this time. While I know prednisone does have its' own little "evils", I also know how it feels when it's the only thing that helps and you are hurting and struggling constantly. Please keep us updated as you continue with the taper. Have you considered asking them for it as a "maintenance" med? Take care,
Always looking for the silver lining, Sharen

SLE '06, Sjogren's '06, Traumatic Head Injury '94
Prednisone 10mg and tapering, Caltrate 1200mg, Multi-vitamin, Prevacid 30 mg, Actonel 35mg


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/20/2007 8:01 PM (GMT -7)   
Thanks for the reply Sharen. No, this is the first time I've taken real prednisone in pill form that I know of. The injections are so dramatic and short term that I don't notice much except I'm better for two days max. On the pills, I've been better for a longer time and better in more ways. It's like manna from heaven, a much needed thing that I'm obviously missing. My metabolism has sped up and now I'm a little wired, didn't sleep last night at all. I seem to get bad side efffects when I taper, not when I take it full strength. Tomorrow is my last day. I've been really worried about my son, so that is probably part of the problem, I put it in a separate post. But I'm letting everyone know about this. I've still kept off the 5 pounds I dropped in the first two days on it. The gi and bloating is slowly coming back though, and neck pain and general flu and sun sensitivity. Hope you are doing ok.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 9/20/2007 11:57 PM (GMT -7)   
I have a belly that looks really preg. and have since my bad flare began back in 2001. My plastic surgeon said my tummy muscles are like 5 inches apart still so that adds significantly to the belly, if I tighten the muscles and breath normally my belly shrinks to about 4 months appearance from 8-9 months appearance. So perhaps some of it is simply muscular. Yet I know I have inflammation in my bowels and liver. So those add to it. I would call all drs involved and tell them about how it went away and is returning on the taper. It may be you need the tests re-run for cushings or your bowels and liver may have had inflammation go away that is returning. Just my two cents but I do advise calling the docs. They know more than I do.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Celebrex, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 9/21/2007 7:33 PM (GMT -7)   
Thanks, Redrose.  I thought some of it was from my spinal problems and so my nerves to my stomach muscles aren't so good so its hard to contract, but after the pred, I'm pretty sure alot of my problems are better.  Yeah, I need to get retested for cushings, I screwed it up by not getting it first thing in the morning and not having someone drive me.  I didn't even know she was testing my cortisol because it was part of a panel.  But even so, my ACTH was low and my cortisol was just at the lowest of normal range for 8AM and I got tested around noon, so my cortisol should have risen significantly by then (in the morning its the lowest and rises quickly once you are up and moving around) so at 8am, well, it was probably very low.  I need to point that out to the rheumie without offending him and see if he will do it one more time.  I see a new endo mid Oct so I can talk to her about it too.  I'm so glad you are pregnant and I hope you are doing well and not getting morning sickness and all.  I always got it in the beginning, but AI disease is like having morning sickness all the time so... 

Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments

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