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Nancy (chance), Steroid-Induced Bio

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golden-oldie

 

Originally posted April 18, 2008

I have Iatrogenic Cushings—I also have adrenal insuffiency —One doctor told me to just say I have Addison’s—I have many symptoms of Addison’s but I don’t have the salt issues. I have much empathy for the 52 year old man.

I am 60 and have been on cortico-steroids since 1979—everyday. It has beaten up my body alot-oh–I have steroid dependent asthma–I have essentially been in statis asthmaticus and/or on steroids for 30 years.

My allergist told me I have the twitchiest lungs he has ever seen. I am sharing this because anyone else on steroids for their asthma must have very twitchy lungs too.

I know I am lucky because I have never been on a respirator–Hospitalized yes.

I would like to hear from other folks with steroid dependent asthma or other Cushing’s folks.

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Meme’s Brother-in-Law, Steroid-Induced Bio

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golden-oldie

 

 

Help!! We get no answers but we have questions! My brother-in-law is 52 yrs old and has had a lifetime of prednisone use due to chronic asthma.

Last spring he got a cold that completely debilitated him to the point where the most he could do was take a shower and sleep. This went on for months. In and out of doctors’ offices looking for answers. Getting none. Lots and lots of tests.

Around September he started regaining some strength and was able to return to work part time.

By October, he had another cold and everything quickly went down hill. Severe fatigue, lightheadedness, muscle weakness etc. etc.

After seeing pulmonary specialists and every other doctor we could, thanks to our HMO, we were told steroid myopathy, Cushing’s Syndrome, cardiac myopathy and the obvious shut down of the adrenal glands due to this.

Now we see why there is no energy!! But what do we do? We live in the Midwest but would go anywhere for treatment or help.

The main question is how does a person get enough strength back to enjoy and have some quality of life?? At this point he is on a maintenance dose of 10mg of prednisone per day so he can live. Should an endocrinologist be checking him?? Any suggestions or comments are greatly appreciated!!! Thank you.

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MIranda (Miranda34), Steroid-Induced Cushing’s

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steroids

 

Hi,
I have only recently been diagnosed with Cushing’s syndrome,and it is due to the mediciine i take for asthma.ilast year i kept collapsing in the street and iwas suffering from low blood-pressure and hypoglycemia.

 

I live in france where this illness is practically unheard of. I am on two different medications to treat my illness but have gained a lot of weight,have a ‘camel’s hump’,edema on my legs and feet as well as having a ‘moon-shaped face”. I am British-American and would love to hear other people’s stories of living with this disease.

 

I am exhausted all the time,depressed,can’t concentrate on anything…i have trouble leaving the house because i get dizzy and people stare at me and judge me because i am obese.

 

I came to this website to hear other people’s stories and to feel less alone because Cushing’s syndrome is a nightmare.

Take care!

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Valerie (vj713), Steroid-Induced Bio

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golden-oldie

 

Originally posted Monday, December 1, 2008

I developed severe asthma 6 years ago. At that time the pulmonary doctors put me on high dose steroids, and I have continually been on high dose steroids since then. As a result, I now have Cushings,addisons and type 2 diabetes. I have tried so many times to get off the steroids but I end up very sick and hardly able to breathe. I’m searching for help.

I hope someone is out there in my shoes so you can tell me how you are coping with this disease.

 

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Heather (HeatherKY), Pituitary Bio

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golden-oldie

 

From Monday, February 2, 2009

Greetings! This is Heather from KY. I finally am sitting down to type out my bio to try to help others should they recognize their own symptoms in my story.

I am 33 years old and I was never someone who was overly sick. I had my occasional bouts with the flu and at least one sinus infection a year, but overall was extremely healthy. I am a former semi-professional dancer and maintained a weight of around 120 lbs. I was blessed with super metabolism and never had to diet, but all that changed around 2002.

In 2002, I developed a case of Bell’s Palsy. It came on over the course of about 5 days affecting the right side of my face. My PCP placed me on a 70 mg daily dose of prednisone to be tapered after 1 week. I felt the effects of the steroid immediately, both good and bad. I was wired every night, up at 2 to 3 o’clock for hours. And the intense hunger about drove me over the edge. Additionally, I experienced a weakness in my jaws and neck that was quite disturbing. Eventually though, after tapering off the prednisone, those symptoms went away and I began to lose weight. I joined Weight Watchers and lost around 23 pounds, even becoming a lifetime member.

Life went along well for a while, I’d lost weight, had a good job and a great boyfriend. But then things started to change. I underwent a personality change that caused me to be moody and upset and pick fights with my boyfriend for no reason. My arms started going numb and I developed a fierce neck and shoulder pain. Even though I was still following my WW eating habits and going to the gym, the weight started to creep back on.

Along about this point in time the panic attacks began. I would go to bed, sleep for 2 or three hours and then suddenly wake up with a racing heart and feeling like I might die if I didn’t release some pent up energy. I literally would jump out of the bed with this horrific feeling that could best be described as “impending doom”. It was such a miserable feeling that I made an appointment with my PCP who thought it odd that I would have panic attacks in the middle of the night, so he began treating me for asthma.

I began to withdraw socially. I didn’t want to be around other people when I was feeling so poorly. My boyfriend decided to move on to a more sociable person, and I slipped into a deep depression. I felt like I was losing my mind and completely losing control. I finally began to consider that I was truly mentally ill. I researched mental illness and found that I had characteristics, but nothing truly fit the bill. I identified with some of the symptoms of bipolar disorder as I experienced wild swings in mood. But I also realized that my problems were not just psychological. I started to gain even more weight. Working out became extremely uncomfortable because of the crushing fatigue and feeling of not being able to breathe.

Trips to my primary care doc were not giving me the answers I needed. No one was looking at the aggregate of my symptoms, only the individual instances. I emerged from each visit a little more depressed than when I went in. I was given anti-depressants and a variety of herbs and natural combinations to try. Literally nothing helped. A small dose of thyroid alleviated a portion of the fatigue, but I still felt I was not getting to where I needed to be.

Oddly, the thought that kept popping into my head during this time was that I felt as if I was on steroids again. But that did not make sense as I had not taken a dose of steroid in several years.

Ultimately, my grandmother gave me an article about a woman whose story was eerily similar to mine. She was diagnosed with Cushing’s Disease. I’ve been involved with companion animals and animal rescues for a number of years and was familiar with Cushing’s in dogs…but had no earthly idea that a human could get it! I remember having such a strange mixture of emotions. On the one hand, I was scared for what may lie ahead, but at the same time I was excited and hopeful to be able to put a name to what had caused me to lose so much of the life I knew. An appointment with my primary care doc and superstar nurse practitioner brought excited concurrence from both.

I was referred to an endocrinologist who then literally laughed in my face when I mentioned Cushing’s. He then proceeded to tell me I was taking too much thyroid hormone and lowered my dosage. Yikes!! Never one to blindly accept the established order, I decided to do my very own research and seek a second opinion. And then a third opinion. All were in agreement on one point: I look “cushingoid”. But some of my tests came back with normal and even low(!) results. Hence I was sent on my way with the proverbial pat-on-the-head…and a recommendation for Weight Watchers.

Fast forward several frustrating months, and I entered into an intensive testing phase for a version of Cushing’s called “cyclical” or “episodic” Cushing’s after seeking the help of an expert in the disease. With cyclical Cushing’s, your cortisol levels fluctuate from high to low and then back to high, producing erratic results and further complicating an already complex disease.

My list of symptoms is fairly typical of Cushing’s:
• A 90 lb weight gain, concentrated around my stomach, that does not respond to diet and exercise
• A round, red face (moon face, facial plethora)
• Acne, much of it on not just my face, but also my neck, shoulders and chest
• Muscle weakness, making it difficult to squat or climb stairs
• Cuts and insect bites are slower to heal and my skin easily bruises
• Severe hair loss

In December 2008, after many years of feeling hopeless and alone, I was diagnosed with Cushing’s Disease caused by a pituitary tumor. Transphenoidal pituitary surgery has been scheduled for February 2009.

If you are just starting your journey, please listen to what your body is telling you. If you are unsatisfied with the answers you are receiving from your doctors, take matters into your own hands. Research and learn as much as possible and do not be afraid to fire a doctor that is not helping. And, most importantly, never give up hope. I’m so glad I didn’t.

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Stephanie (steph), Steroid induced bio

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golden-oldie

 

From Friday, March 6, 2009

About 2 and a half to 3 yrs ago, i was being treated for a condition called Reflex Sympathetic distrophy.

While they were treating me, they were injecting me with steriods. And from that symptoms started showing up that had nothing to do with my rsd condition like; the red moon face, the obesity, the irregular periods, and the striae marks.

Due to the VA ruining all the tests they did, about 6 months later i was rushed to the hospital near death, when the doctors at the hospital did the tests they discovered that i had cushing’s syndrome and that i was lucky to be alive.

I am now cured of cushing’s however i still the striae marks all over my body and am still somewhat fat. I am afraid i could get sick again and am very self concious about my body.

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Kate N (Kate NC), Steroid Induced Cushing’s

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steroids

 

Hi everyone! My name is Kate and I am 32 yrs old.

I’ve had back pain since I was 14, and 6 years ago I went through a series of steroid injections to try to relieve the pain. I ended up with steroid induced Cushing’s Syndrome.

I gained 80 pounds in under 8 weeks, grew a huge buffalo hump, lost more than half of my hair, had a horrendous headache that hospitalized me, gained the deep stretchmarks, grew facial hair etc etc etc. You name it, I had it. All in a matter of 8 weeks after my final steroid injection.

Fast forward to today and I still have all of the weight, my hair didn’t grow back, I still have SEVERE facial flushing every single day (the flushing alone is ruining my life) and I have yet to find a good, knowledgeable Endocrinologist who can help me. I did have a plastic surgeon remove the buffalo hump so I feel much better about that. We have only caught my cortisol level high 1 time. I’m not on any meds for the Cushing’s and I’m miserable.

Just hoping to get to know some other people battling this awful disease with me. Thanks for having me.

 

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