Re: Can anyone give some encouragement? -- Steroid Warning Network

[ Show ]

Support VoyForums

[ Shrink ]

VoyForums Announcement: Programming and providing support for this service has been a labor of love since 1997. We are one of the few services online who values our users' privacy, and have never sold your information. We have even fought hard to defend your privacy in legal cases; however, we've done it with almost no financial support -- paying out of pocket to continue providing the service. Due to the issues imposed on us by advertisers, we also stopped hosting most ads on the forums many years ago. We hope you appreciate our efforts.

Show your support by donating any amount. (Note: We are still technically a for-profit company, so your contribution is not tax-deductible.) PayPal Acct: Feedback:

Donate to VoyForums (PayPal):

[ Login ] [ Contact Forum Admin ] [ Main index ] [ Post a new message ] [ Search | Check update time | Archives: 1, 2, 3, 4 ]

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Date Posted: 16:53:32 10/23/07 Tue
Author: Lori (Understanding!)
Subject: Re: Can anyone give some encouragement?
In reply to: Paula 's message, "Can anyone give some encouragement?" on 09:32:53 10/23/07 Tue

Howdy Paula!

There are sure a lot of us on here that can really relate to what you are going through. I'm going to try to share some things with you, so it may be a long note.

First, the gaining of weight is fluid being trapped inside of our muscles. IT IS NOT FAT! I have been on the low carbohydrate diet for approx. 20 years. Three different times, I was able to loose right at 100 pounds. I've had Cushing's for over 30 years. I'm 52 years old, and one steriod shot when I was 18, gave me Cushing's. At that time, I gained 75 - 100 pounds, I don't remember for certain. That was approx. 1975, and I was able to loose all of the weight. But, I still had Cushing's, and so developed Asthma, Arthritis, and Fibromyalgia (all from Cushing's). Because of that, and being the innocent party in multiple car accidents, I spent the next 20 years, on Prednisone Packs, practically every other month. I gained over 100 pounds, and was eventually able to loose it. Then, in 1995, I was bit by a spider, and to keep from having my foot amputated, I had to have another prednisone pack. IN 3 MONTHS, I GAINED OVER 250 POUNDS. I went from a size 18 to a size 60 in 3 months. I was able to loose 128 pounds of it, then suddenly I gained over 60 of that back. I have not been able to loose a pound since then. I now live on a low-glycemic diet. The reason I stay on the diet, is to keep from developing diabetes, which is also part of Cushing's.

The "fat pad" on your upper back, is referred to as a buffalo hump. Practically everything you referred to is strongly related to Cushing's. It is not in your head. The medications they had you on can cause all of the problems you mentioned. I'm sorry this may not be a very encouraging note, but I know that I wanted the truth told to me, so I would know what to expect. Having learned as much as I have from research, this network, my current WONDERFUL doctor, etc., has helped me GREATLY! In the past, I had bad doctors that kept telling me to loose weight, that it was my fault, and never acknowledged that their medications were what was destroying my body. Now, I no longer feel guilty, and I know what is destroying my body. Because my Cushing's is so advanced, it is taring the muscles, tendons, & cartlilage in my feet, arms, chest, back, etc.

As far as spending money to get diagnosed; it was a blessing to me to have the diagnosis. I don't know how to advise you otherwise. Maybe someone else will have a more solid answer for you.

God bless you, and I hope you can find some peace with this. It's a horrible disease to live with, but knowing what is going on in my body, helps me to deal with it.

Love and Hugs,
Lori

>Hi all,
>
>This is my first time here and this is a long post, so
>sorry in advance.
>
>In August of' '04, I started using Climara estrogen
>replacement patches (which I now know is a steroid) to
>control severe hot flashes. I gained 10 lbs. in 3
>months but wasn't too concerned at the time as I had
>heard the patch could cause weight gain from water
>retention.
>
>In March of '05, diagnosed with high blood pressure
>and was prescribed Mavik.
>
>In May of '05, I was having a difficult time catching
>my breath after very little exertion. I quit smoking
>after having smoked heavily for 25 years. Doctor sent
>me for a pulmonary function test (PFT) and was
>diagnosed with COPD/emphysema. He prescribed Advair
>250/50 inhaler. Advair, I now know, contains
>fluticasone proprionate, a steroid. He referred me to
>a pulmonologist who agreed with the Advair use and
>dosage and added Albuterol inhaler as a rescue.
>
>Complained to my doctor of rapid weight gain - 30
>lbs. in 6 months (and that's on top of the 10 lbs.
>from the estrogen patch!). Could it be the Advair I
>asked? Not possible, he says, it goes directly into
>the lungs and not into the bloodstream. You obviously
>eat too much and must cut down and exercise more. I
>haven't seen that doctor since.
>
>Before all this started I weighed 135, which was
>perfect for me on my 5'4" frame. I only eat low carb,
>have been eating that way for the past 5 years. I
>don't eat candy (nothing with sugar), no starches - no
>junk food period. Haven't changed my eating habits
>one bit. Am active and walk with my dog every day.
>
>In February '06, I saw my pulmonologist because my
>breathing worsened after a prolonged cold.
>He prescribed prednisone for 1 week and upped my
>Advair to 500/50. By the way, he also said no way
>does Advair cause weight gain. Also, he told me to
>lose weight as the extra pounds made it harder for me
>to breath. No kidding.
>
>In May '06, I had continuous pain in upper right
>abdomen and fluid retention in abdomen and ankles.
>Saw a new doctor who sent me for CT scan, chest x-ray,
>and new PFT. The CT scan showed an enlarged, fatty
>liver. Chest scan showed hyper inflated lungs
>pressing down on my diaphragm and liver. PFT showed
>no decline in lung function since May '05. Doctor had
>no answer for the liver problem, other than to lose
>weight. Gave a prescription for Lasix 20 mg.
>
>June '06, I started researching my health problems on
>the internet. Didn't do it before cause I know I can
>be a hypochondriac and I trusted doctors. Wish I had
>researched earlier. Boy, was I clueless!!!!!
>Apparently the estrogen patch can cause high blood
>pressure, the blood pressure pills cause shortness of
>breath, the steroid in Advair can cause weight gain.
>
>Since all this started, I now had a weight gain of 60
>lbs., mostly in my abdomen. My face had become very
>round, red and puffy. My neck was thicker. Was
>getting a weird fat pad on my upper back. Swelling
>all over. Depression, mood swings, emotional at the
>drop of a hat and short tempered. Oh yeah, add in an
>incisional hernia (a Cesarean 34 years ago) from the
>excess weight.
>
>Then I learned about Cushing's and how steroids could
>cause it. The symptoms describe me perfectly.
>
>On July 4th, I stopped taking all prescription
>medicines except the Albuterol as needed. It was my
>independence day. I just stopped without talking to
>my doctor. Stupid probably but I was getting
>desperate. Within 2 weeks I had more energy, less
>aches and pains, no longer as depressed or emotional.
>Still no weight loss and still had a nasty short
>temper.
>
>Saw doctor in August and told her I quit medications
>and she didn't argue with me. At least when I asked
>if inhaled steroids got into the blood stream she said
>"absolutely". Blood test didn't show excess cortisol.
>
>
>Now it's been 16 months since I stopped all steroids
>and I just cannot get the weight to budge. And, I am
>still quick to lose my temper.
>
>I truly believe the steroids are to blame for all my
>ills - except for COPD/emphysema because I did smoke
>for many, many years. That one is my fault.
>
>I am truly sorry for such a long post.
>
>Can anyone offer any encouragement? Is it worth
>spending my money on being tested for Cushing's if it
>is steroid induced?
>
>Thanks for "listening".
>
>Paula

[ Next Thread | Previous Thread | Next Message | Previous Message ]

Replies:

Re: Can anyone give some encouragement? -- Leslie (supportive), 01:59:42 10/30/07 Tue