dear liz,

I was on prednisone from very early as a child in the 1970’s in Michigan and I remember the residents being happy that I wasn’t gaining weight and remember being rather taken back at their interest in this. What a terrible message those residents and ped endo sent to a child about body image by expressing joy about that I had maintained my weight and let’s hop on the table girl we’re just going to take a peek at our wonderful surgery also.

I was an active child being that I was outside every day and did physical things like swimming, going on long nature walks with friends, Kick Ball,  horse back riding and cleaning the barn. The weight at first was more about the season outside and my level of activity level being that in the summer I lost a little and in the winter I gained some. Remembering back it was something like 5mgs of pred and never trouble with over suppression or anything will the lab results. 

I wasn’t over feed but well feed and I had equal amounts of veggies compared to everything else. I’m of German background and we ate the potato salad geez it was good and being from the midwest had the best corn , steaks,  lettuce or zucchini from our gardens or someone else’s ...ohhh and the kielbasa and sour kraut too : ) yummy! So, I ate and wasn’t heavy but wasn’t a toothpick either.

My Mom, she is awesome  never talked about weight to me as a kid as I’m sure you parents don’t but those residents did and that really bothered me ...gave me a stigma that my worth was tied to that scale after having to endure them.  I was so frustrated with their message that out of anger would gorge myself on food. I wasn’t even hungry really but was upset by the message that was being given to me a the docotr appointments ...Oh you happy? that I’m at this weight... well ...I’m going to eat, eat, eat then those smiles will be gone. 

I was taking the 5mgs of pred which is 8 times the strength of hydrocortisone and still around age eleven had facial hair along with excessive hair on the arms really some of this could of been ethnic background in general.  This country is so not with girls having any hair except on the top of their heads ...my friends from Spain have more excessive hair than me and it has nothing to do with anything but just is.

In school, I got the crap teased out of me on the bus for the excesive hair with being on the pred ..the residents and doctors B***S***** me  "Hair?? Noooo really we don’t see it...hummm." I walked out of there feeling hopeless. (medical records that I later sent for showed the hair was an interest for them but the blood work was good )  Anyway the boys in middle school, the nice boys in my class that actually liked me sent a representative that  softly in a hesitant voice told me in math class we do like you but you look like a little bear with all that hair and by this time I also had tons of acne but that didn’t bother them and I was thin at the time also ......the kids on the bus were rather mean and called me Wokey from Star Wars. I told teachers, the bus driver about the teasing and was blown off really it was hard enough to bring up the reason for the teasing in the first place. I told my parents and they really didn’t want to believe it but after some vists to the school, the      out right teasing stopped but the suttel teasing continue. Not letting you take a seat **** even the fat girls wouldn’t let me sit wth them ! ain’t that something and they had special seats in the middle of the bus according to the bus driver so they woundn’t flip the bus over ... tripping you, teasing about other things, pulling your hat... crap like that. I asked for an assigned seat up front with the smaller guys that had been picked on but the bus driver told me that was for kids that can’t defend themselves (geez... lady thanks for not giving me the assigned seat and the vote of confidence because years later it would help  me as a social worker in the hood because these guys were trying to tease me and that pissed off the drug dealer because you don’t tease the social worker that is trying to help the neighborhood and you don’t tease them in front of the dealer that is bring money to the hood from the wealthy white neighborhoods : ) nobody wants to attract the interest of the cops going back and forth on the main road because the cops do the sweeps as needed anyway)  ok wait  back to know high school still lots of excessive hair girls told me that I looked like George Michale from the group Wham, they were nice enough about it and back on the bus  and this one nice guy  really got sick of it all and pummled the one guy that was doing most of the teasing ...lol ....he just shoved him off the bus...  with one swing had him to the ground and kicked him ten times in the ribs and walked away. I was sick of it also to the point of also teasing back but IT WAS SUPRISING to see the one guy really go after the one that was doing the teasing. I liked it because it was validation that something really was wrong and scary at the same time because this kid got his a** beat because the doctors at the medical school couldn’t help and also choose to not validate my concerns psst we came do anything as long as doctors really show they are in our corner when I saw that  kid on the ground it was like the doctors were on the ground. Being from Michigan, all of knew how to shoot guns and had access, I’m glad it was the 80’s at the time and nobody thought to shoot anyone about being teased . Still  taking that pred but a little more- the endo and his posse of students happy about the blood work and the weight was going up. I was a nervous wreck because of the excessive hair, genital exams and having the crap teased out of me that I gave up the horses for awhile (my major source of exercise which without it the weight came on)   ... really no change in the hair and was doing the nair thing but all that did was burn my skin and make it more noticable that hair was growing.  I shaved also and the humm the doctors just wrote that down like it was nothing and this endocrine fellow which I believe are the ones that are the students that want to practice Endocrinology was attached to my case actually wrote that I was happy and outgoing plus she used the word bubbley ..yeah... we shave our face, burn ourselves with Nair, endure genital exams and she writes bubbley that woman needed more thyroid medication and she also right that well ... the sideburns are blonder and not as noticable  hey  out in the sun but she never wrote about the hair above my lip or on my chin or neck was any different heck she ignored that outright She notes HER NEW findings about me being on the pred among other things a moon face and fat deposits on the back ---the prized lab rat I am . Out of frustration I ditched the pred on my own cold turkey ...just fed up and knowning that wasn’t a good thing to do---playing with fire and a week later got  sick and had olympic vommiting, I started to hallucinate an saw a person come out from under my bed that wasn’t there . My father thought I was going to die, Instinctively, I told him needed pred and asked him ummmm played it off like forgot the pred ..didn’t tell for how long. Later upon seeing the endo fellow she remarks about needing more pred in times of illness ...yeah lady I figure this crap out way before...ummm last week tried to do myself in complete with already guessing what you just told me  yep the excessive hair still bad and the acne but lab tests still good for them but anyway the Endo and the resident that is out there being someones’s doctor now decide to give me more pred This is BAD I’m not to take 20mgs of pred every day and trying to graduate from high school- fat as the good year blimp now because of the pred and little by little giving up (having no interest in my active lifestyle) was offered a dietitain ..a little poker herself which after all this I went home in frustration and ate three chocolate bars  and no the excessive hair didn’t stop but the acne stopped awhile ago on it’s own and the girl that teased the crap out of me about that ended up with tons of acne. And I could of teased her or at least laughed but that isn’t me.

The excessive hair did eventually lessen on it’s own after I left that state and reduced the pred on my own I cut it half and took 10mgs of pred before I found a new endo and I SHOULD OF CUT IT more because the one that I found in 1989 didn’t want to discuss dose reduction or anything w/ cah. I don’t know how much she (the endo) really cared because in 1995 she ended up getting sued for medical negligence by someone but not me .....although looking back it does explain so very much. 

 I was losing some weight because I was nervous maybe from the pred? or also from the liqiud diet that I was on from those drinks you mix and that’s a bad way to lose weight but I also had a much more active job which was good. On to the next endo still taking the 10 mgs of pred -  I asked him in a nice respectful way to reduce the prednisone. He said "no"  and with the respect to the they have mood swings group but I thought I was going freaking nuts!  Mood swings would of been a relief. Anyway, asked the doctor for valium and he said "no". While waiting for him at the next visit that I had to beg to get off work for ..It was OK one hour passed  no problem  two hours passed ummm he’ll ses me ...soon? i notice that drug reps are going in and out with no problem I let this Endo have it right in front of one of the drug reps ...men in suits do not scare men ...I was furious and right after that he reduced the pred to 7.5 mgs, the blood tests were super and the hair lessened a little more.  I wanted the pred reduced even more because I was wound tight with an amazing startle response . Even positive comments would drive me nuts ...What you like my my HAIR !!^%*  Managers in training couldn’t even say hello to me. My own manager that was relieved that I always showed up on time and told me this which made me switch and come in a half hour late like the rest of the crew crazy s*** The only thing that kept me half way ok was the church people coming in on Sunday. 

I asked the Endo again could I reduce the dose of the 7.5 pred. he said "no" then laughed and said," Try meditation." I meditated my way to a bar and drank until I was numb and dumb but at least I didn’t feel one way or the other and during the times that I was sober I went to a shrink where I did a test and the anxiety was off the chart. She thought it was something to do with the thyroid something at one time hyper then hypo and I thought no the Endo ...well heck all the endos  THEY THE EXPERTS would of mentioned this RIGHT!  ummm right? turns out no that chronic Hashimoto’s thyroiditis which is a common thing isn’t really addressed couple years later the next endo does a test for it which between that and the pred and low self esteem about my doctors always going on about my weight it’s amazing that I actually did sober up. This endo did switch me to hydrocortisone 25 mgs/ day  before I even asked but didn’t help with the weight because he has this little toothpick of a NP that goes on  in a voice that only rich people with money can do naturally " Oh.... the weight ...ummmm  are you going to lose this?" I want to snap her in half and toss her in the corner.... kidding ....really I AM!  I asked her about losing weight and she goes "you should" after the one visit of " Do you WANT diabetes? and then a snicker. It’s enough to make you want to go across to the Friday’s and put away three Kaula and creams w/ a splash of rum. Ohhh their condition makes them traumatized  ohhhhh  ohhh their medication makes them depressed  oh geezzz maybe just havig a condition and the dealing with doctors, and nurses and such that’s a little frustration and not depression because you are crying and are doing making an effort not to hit someone well ummm that’s not lady like anyway and those surgeries are supposed to show us that we are lady like. My advice is give her the pred and then give her some golf clubs  : )  

 

 

Stupid me gives up orange juice reading lots of sugar in that and disregarding the other nutrients which were helpful in fended off the factors that started my cancer or it could of been the Celiac Sprue where the nutrients that I was consuming weren’t able to help either.  Chronic Thyroid Conditions and Celiac Sprue both do a number on moods and weight --- these are two very common conditions that aren’t diagnosed, I look back and wonder was it just the prednisone that caused moodiness or was it these other conditions also? Or and no offense to anyone but I’m of german ethnic background and I’m just an hot head at times- it aint’ that deep plus trying to live life and not being to frustrated about being born w/ cah and not frustration about having it but frustration that the correct knowledge isn’t more common place . Sometimes the pred gets a bad rap or it’s just bad for that particular person at that time, to much, or altogether. I think the cortisones just enhance? the personality that is already there. 

I’m taking the hydro now and it works for me but yeah try the pred for your daughter. It might be the best thing for her or a nightmare.  I think it would be a good thing to try with caution because of her undersuppression.

I hoped you liked my story and wanted to add real experiences to living on pred and I hope it helps her get the results she needs.  I like that the doctors have the three different cortisones and the knowledge of what the side effects are from my generation .....oh yeah talkin bout my generation -

Peace,

Aimee