Prednisone Support and Awareness

I am so close to being off of Prednisone again and I am so terrified. 

If I come off it and everything goes to hell again there’ll I’ll be, back up to 50mg.

It’s truly terrifying.

“I hate the way you taste
And the way you make me feel.
I hate the acne you cause
And the fact that I can’t kneel.
I hate this ugly “moon face”
And my new round belly fat.
I hate you so much it makes me sick,
I just want to squish you like a gnat.
I hate how you make me moody
I am an emotional *beep*.
I hate my new found insomnia
I am sick of counting sheep.
I hate that the doctor prescribed you
I hate it when he increases the dose.
But mostly I hate they way I need you & I can’t hate you,
Not even close,
Not even a little bit,
Not even at all.”

by Ally Gomez

@ http://helloallyg.tumblr.com/

Hello to you all! I’m so happy to see that some have already found and joined this blog/support group. If you know anyone else struggling with prednisone currently or in the past, or who are dealing with life-altering diseases which force them to use prednisone please spread the word that WE ARE HERE!

I would love to see this support group flourish with people who can support one another!

Please feel free to submit posts of any kind, even if it is simply a cry for help for someone to listen who can relate and understand. That is what we are here for! And I am not excluded from those who need exactly that.

Stay strong!

-Amanda-

johnnycsthemanforme reblogged your photo: Prednisone: The all-time eating, shaking, bone… block

“Finally the truth about prednisone!! Although I didn’t have trouble sleeping, but I did have night sweats.”

BEEN ON PREDNISONE FOR R.A. AND A.A….SO FAR SO GOOD.IT’S BEEN 3 MONTHS NOW, AND i FEEL BETTER…..

I will be ‘celebrating’ my 4.5 year ‘anniverary’ of being on Prednisone this November. I can’t say I’m actually excited. I started the drug in 2007 and have been high dose and I’m currently on 5mg a day as a maintenance dose. I refuse to raise the dose to help with the horrendous hip arthritis I have developed because weaning is so damn awful. 

I developed prednisone poisoning at one stage which caused all sorts of fun neurological issues, much similar to a Parkinsons and MS cross. 

While I think Seroquel is a worse drug to be stuck on long-term, Prednisone is my second nomination. I take both, so life is a long blend of hair falling out, moon face, neck hump, gaining weight, vomiting, getting the shakes, insomnia and being super grumpy. 

I will likely be on Pred long term as it is *the* only drug my symptoms respond to — I have been denied access to biologics. If only people knew how much hell came from Pred, they’d grant us all the freedom from the drug. 

A little about me and my diseases:

*I was diagnosed with Ulcerative Colitis 12 years ago. Throughout those 12 years I have been on and off prednisone too many times to count. Every time it has made me gain at LEAST 50 pounds, and usually more. I also get the worst moon face known to man and sometimes I swell so badly I have to go to the E.R. just to get I.V. diuretics. 

*Shortly after being diagnosed with U.C. I was diagnosed with Iritis in my right eye, which I have to take a special prednisone steroid pack for each time I get a flare-up.

*I have a history of Ovarian cysts. Last May, 2010 I was diagnosed with Ovarian Cancer and had to be put on prednisone due to treatment. 

*This May, 2011, I suddenly came down with an unknown lung disease after repeated cases of both pneumonia and bronchitis. While my U.C. and Iritis are remaining quiet for the time being (thank god), this lung disease is so severe that I am in the hospital about every month, if not twice a month. Due to this I have been on high-doses of prednisone for the past 5 months and as of right now there is no real end in sight. 

*Over the past 5 months I have gained 90+ pounds and have been more swollen than I have ever experienced before. It has also increased my depression, anxiety and agoraphobia ten-fold and drained me of all energy. Additionally it has caused my mind to be so cloudy that even as a 28 year old woman I have had to quit school, move back home, and depend on my mom to provide me with all 20 of my current medications as well as transport to all of my doctor appointments. 

*I am being seen by 4 specialists at The Mayo Clinic now and spend at least 2-3 full days there each month. I also have an oncologist and a gastroenterologist here at home. 

***Needless to say, I completely feel for anyone and everyone who has to deal with being on prednisone and I hope that we can all be there for each other!***

This is a blog I am starting not only to talk about my own personal struggles and woes with Prednisone, but also for everyone else to come and discuss and commiserate together on what we are going through, what we have gone through, and basically anything and everything relating to the use of Prednisone and the countless diseases which force us to be on the terrible medication.

This will be a safe place for sharing with others. No negativity towards others will be tolerated. Although, I don’t believe any negativity could possibly exist towards another person going through everything that Prednisone does to us.

If there is anyway you think this blog and support group can be improved upon please feel free to contact me with any thoughts or ideas at anytime. 

Here’s to the hope of surviving through Prednisone and to the hope of someday being Prednisone-free!

-Amanda-