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Been on Prednisone for 3 years now for ulcerative colitis. At fir...

Posted at 11:46 AM on Mar 07, 2008 by geemgumgomgum, #27799
Been on Prednisone for 3 years now for ulcerative colitis. At first tolerated the drug quite well. But after a few months started to gain weight, acne. After 3 years of yo-yoing between large and low doses, each increase in dose made me feel worse. I am now at a state of osteopenia and of extreme tiredness and brain fog. I see 80yo with more energy than I. I cant walk up 10 sets of stairs without feeling tired out. I need to sleep 3-5 hours a day just in order to function. As mentioned before brain fog is amazingly bad. I'm a scientific researcher which can no longer work. Prednisone has introduced to me what panic attacks are, mood swings, joint pain and swelling, extreme muscle fatigue and wasting, blurry vision, in habitual eating habits, depression. This drug has ruined my life. I would have preferred having surgery to remove the colon and going to the toilet 10 times a day rather than not living as brain fog and tiredness that makes my life a dream-state nightmare.
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Reply about 1 year ago on Apr 16, 2008 by sandy146, #7283

Hi
I'm so sorry to hear how your feel. I am also having a horrible time on this drug. I was studying to be a Chaplain and in my last year and ready to graduate but cannot see myself working anywhere I am so weak and tired. I now have to use a walker to walk throught a store and can barely go out to buy groceries without feeling like I will collapse. I took the drug to prevent blindness from Giant Cell Arteritis and now their not sure if I have it because its not helping and the pain is on both sides at once and that is uncommon. All we can do now is try and adjust how we feel now. Its going to be hard but we have no choice. I don't know if you believe in God, I do and that is all that keeps me going when I feel like giving up. Sometimes I wonder why this happened but I don't know yet and hope that one day I can use my life in some way to be of help to others even if I can't be a Chaplain. I wish you the best.

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Reply 4 months ago on Jul 10, 2009 by tam3, #21340

You just explained exactly how I feel. I was dx with crohns 6 yr ago at age of 32. Had symptoms since 15. Had drug induced hepatitis from Imuran severe...the pred. masked the symptoms for 2 1/2 months...but after 2 wks in the hospital my liver recovered eventually. I then had drug induced Lupus from the remicade. My ana was off the charts. I still have it two yrs later. I had anaphylaxis from asacol. Entecort didn't help at all. So...they won't' try humira. I have been on prednisone more than off the past 6 yrs and cant remember things...can't think clear...am horribly fatgued. I was just admittted for my asthma 6 wks ago in for a week. I was on solumederol then prednisone then got worse so back to solumederol. Finally the dr. sent me home on 160 of instead of 80!!! This didn't get caught until 2 wks ago when I went to the er so sick. The Er dr. fliled out! I had such thin skin on my arms that they were opening and bleeding out like lesions. Mind you I am on blood thinners because I have a medi port in my chest and I have had 5 dvt's due to a dx of auto immune vasculitis. Have had eschemic colitis. ( 22 day hosp. stay). Well I have blurry vision but it usually is on pred but dissapears. The worst thing is I have a blind spot in my right left eye now and severe cushings syndrome and drug induced diabetes!!! I am totally insulin dependent. 3 shots of fast acting a day and then 40 mg of the long acting Lantus at night. Dr. thinks the diabetes will stay. He still on his dictation won't admit to his mistake. I have severe charlie horses in my hands, calves and feet. The biggest dose of prednisone I was ever on at home was 80 mg. I am just sick that I have diabetes. I have gained 100 lbs in 6 yrs from the pred. I went from a size 6 to a size 16! I have lost 18 lbs though. If I get below 30 mg I have severe D. If I get any lower than that the joint pain comes back...but this drug is killing me. I sooooo understand what you are saying! I will pray for you both! Sorry you have to deal with the horrible side effects of this drug. I wish I was never on it. I actually want it on my allergy list.

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Reply 4 months ago on Jul 10, 2009 by tam3, #21341

Oh, I am on Klonopin too. 1mg. I take 2 a day now at the most. Lexapro too. The prednisone gave me horrible anxiety/panic. On 160 I had to take 3-4 a day.

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