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Re: Cushings Disease

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Old 08-08-2009, 11:15 AM   #1
Avenue Q
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Question Re: Cushings Disease

I hoping this is the right forum to find some infor on Cushings Disease. Can anyone please help me with information.

I am well aware it may be Cushing,even though I haven't been tested yet. I do know it was induced by PM injections of Kenalog and Lodicane. But things like this go unrecognized by the doctors who were me on this one..been there done that. Doctor's will bond together making you look and feel like a total idot...yet you know damn well what caused this to happen.

Nevertheless, the side effects seen to be ever lasting and causing me problems. Like bursitis where swelling remains and swelling runs thoughout my entire body.At the time my body swelled up...I looked like the Michelin Women. Lets face it if I never had swelling before in my entire life and then wammo my body starts to inflate within a 15 minute window of time. Something immediately went wrong.

Anyway thanks for letting me vent. Please just a little input as to what or who i should be doing and seeing in the medical field for help. I was told a blood test and a 24 hr. urine test...and to see a Encrinologist missed sp.

What scares me now is that the swelling has gotten more so in the area of the Trechea....'in the spot where a tracheotomy is performed if needed in emergency.....I just added that to explain the location. Besides the swelling sits around my neck girdle as well.

Many thanks for reading and hoping for any input.

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Old 08-08-2009, 03:57 PM   #2
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Re: Cushings Disease

Yup, me too. Good news is endocrinologists tend to be much better treating (and recognizing) Cushing's than rheumatologists, orthos or GPs. 10 years out and I still have facial hair, acne and everytime I gain the tiniest bit of weight it immediately goes to those "fat pads" caused by the kenalog.
I hated the neck swelling, it's sooo uncomfortable, especially at night.

You'll need to get your hormones and thyroid levels checked. (that neck swelling could be from hypothyroid) Alot of the weight tends to be water so drink lots of fluid (any fluid, doesn't have to be water) to wash it out. Low salt diet. And take vitamin D/calcium supplements, if you don't already, osteopenia and osteoporosis are common after Cushing's.

Your endocrinologist will have lot's of suggestions for you, medication, maybe even a diet plan or a referral to a nutritionist.

If you're looking it up, Cushing's Disease refers to a specific type of Cushing's, a problem with the pituitary gland, called hyperpituitarism. While Cushing's Syndrome often refers to the set of symptoms (side effects really) from cortisone.

Last edited by AuntieLeela; 08-08-2009 at 03:59 PM.

Old 08-09-2009, 11:36 AM   #3
Avenue Q
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Re: Cushings Disease

I was so glad to see you had responded to my post. I read several posts looking for specific's on who on the board may have recognized the drug Kenalog. Another question, were you told of any nasty side effect there were after using Kenalog? and did you sign any papers giving him permission to use the drug Kenalog?. I can say I will never trust the word of any doctor ever again after this experience.

I went to the PM dr. when I sustain had injury to my 'piriformis muscle'<> which is located beneath the sciatic nerve and is located DEEP in the buttock.

Are you aware of how many people this drug has caused so many different health problems. On the site/message board talking specifically about 'KENALOG'. Majority want to look into a Civil Action Law Suit, but again the Pharmaceutical giant wouldn't have it. I don't understand what ever happened to the words in the Hippocratic Oath where a doctor 'will never do harm to anyone' (whatever it say's) 'just bull. Were you ever told your swelling was fluid?. My swelling...are pockets of FAT..caused by the drug. And like you this happened to me 11 years ago this pass April 6th, my day of infamy. What happened has destroyed me....and drs can careless.

Nope! I don't yet have osteoporosis nor osteopenia <>never hear of this one before.

Have you seen a endocrinologist, and if so what did he or she suggest you do to help?. Damn, my pcp should have suggested I see an Endocrinologist years ago. I only found out through the Internet and exchanging email with other's just a week ago. Plus I came across a post you had responded to regarding "Predisone' found it somewhere in pass postings....this caused me to post on this board. So thank you once again .

You said Cushing's Syndrome often refers to the set of side effects really from cortisone...aren't all steroids from the family of cortisone. I guess that why Kenalog is called a cortisteriods. Is there a site that list side effect caused by cortisone/cortisteriods.

Another question please...were your injections done through the use of a fluoroscope method or did your doc just inject blind sited?. You know I found out more information from the net then any doctor was willing to admit.

You mentioned the swelling around your neck being uncomfortable. Well after 11yrs. and months. In Jan 09, I was dxd with bursitis since theswelling was causing me real pain. Pain where I couldn't even reach or stretch without being in alot of pain and dicomfort.

Now I feel it fits more onhe level of 'spetic bursitis'. My doctor can't tell me this swelling hasn't become stagnant after sitting 11 long yrs.... when it isn't fluid also.

Many thanks AuntieLeela, for your advise, I really appreciatedy your help

Old 08-09-2009, 10:23 PM   #4
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Re: Cushings Disease

I was told - after I warned the doctor that I had extreme side effects from oral steroids and refused to take them - that I would have little to no side effects from Kenalog, and another injectable steroid called Medrol. Which, as you pointed out, is total BS. Kenalog is actually eight times stronger than oral prednisone.

It took me years to realize where all the new "symptoms" (that seemed random to me) were coming from. I toyed with the idea of a lawsuit at the time but I did sign papers (without reading them, I mean really, in a doctor's office who does?!) and I have so many different chronic illnesses that it would make a lawsuit impossible.

My injections were blind, into an ankle and knee joint, and monthly systemic injections of Medrol.

If a doctor refuses to report adverse effects you can report them yourself, here:
Lot's of info on that site as well.

Old 08-10-2009, 12:42 PM   #5
Avenue Q
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Re: Cushings Disease

Re: Cushing's Disease

Doctor's need to take a class in 'Listen to your patient'. I think I can safely say that the majority of people don't really read what papers are put before them. I remember my day quite vividly he began by stating that he felt I was a prime candidate for this procedure. Mind you this dr. was already well established in Sports Medicine He wanted to expand his practice further into Pain I guess you can say I may have been his first patient for him to test on ( who knows I may have been his first guinea pig.

But yes he did hand me papers to read as i began to look them over he tells me. There was to much to read and it would take to much time to cover . He tells me only say that you agree to the shots...Never did he mention the drugs he would use...and I like a moron I assumed it would be cortisteriods I had only 5 months prior to this attempt. This would be my third attempt to rid of this buttocks left leg pain that had plagued me for ten long years. Problem I was always treated for a sciatic problem (that it wasn't). But again do doctors listen NOPE!. I new for years it wasn't a sciatic problem because it was a chiropractic manipulation that cause it. ' Yep, you heard right...I have no luck with doctor's. But that's what started my pain. Finally a doctor did hear what my complaints were...he did recognize the possibilities were that it could be as simply as a muscle in the buttocks...and since the sciatic PM attempt didn't work... he sent me to a PT...sure enough it was the piriformis muscle. This muscle goes unrecognized since the characteristic mimic sciatica. Most doctor's only came to understand that it doesn't have to be sciatic pain and needed to look outside the box into treating the pirifomis muscle and not just sciatica pain.

Sorry got off track...back to the PM doctor who said i didn't need to read the papers. Assuming the injections would be cortisteriods as pervious ones ...besides I thought I could trust him.

AuntLeela, I forgot to ask you if the injections of Kenalog put a stop to your pain problem?. Because it did for me. I can't say that the drug Kenalog doesn't work because it certainly did for me. After 11 yrs 4 months 4 days my pain is still gone. Its the side effects that are my problem ever since. Sometimes I think to myself hell! I rather have the pain in my *** then a pain in my neck ...with the possibility of infection looming.

Your injections were blind...but that's because it was to the knee and ankle.....but the two PM doctors I had seen did use the Flouroscope method the last guy just did it blind...and he did an epidural bind also which to me was WRONG!.

You said you toyed with the idea of a lawyer, I did call one only three weeks after being told the PM doctor wasn't in the office, or he wasn't available to talk, or it couldn't be from the injections. Beating my head in frustration...I now turned to my primary dr. After he already had jerked me around and told me the swelling was lymph edema. He actually had the goal to tell me it could be a heredity thing or some people are just born with it. Well I had to bite my tongue at that moment or I think I might have been locked up....words were running violently in my head. I say look at my history there isn't anything that says swelling of anykind...besides knowone in my family has ever had swelling. I told him it was from the injections and he just ignored me...

So I did call a lawyer he tells me if you can get your pcp to say there wasn't any swelling prior to the injections...fine call me back. BUT! I can tell you now he will never admit to that....but if he should call me back and i can help you...otherwise there isn't anything I can do for you. Called that SOB..RE: the swelling he says "I don't know what your talking about" what swelling???

I really thank you for reading all ...mainly thank for allowing me to vent.

Thanks lots for the link I did follow through once before ...but the damage is done. What's that say if I ever need to go to the hospital..who's going to believe me. know onewill.

Again TY

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