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I was diagnosed with Crohn's disease in July. I had my colonoscop...

Posted at 10:40 PM on Jan 03, 2008 by tesa, #26048
I was diagnosed with Crohn's disease in July. I had my colonoscopy/endoscopy the day before 4th of July. Got sick with what I thought was the flu on June 26th. That's when I first landed in the hospital (dehydrated & sick). After the diagnosis I was first put on Entocort and Pentasa (Pentasa is supposed to be a remission drug - keep you from having flare-ups). Entocort didn't work so they switched me to Prednisone. I've been on Prednisone for about 6 months now. Going from 20 mg to 40 mg and then I'm finally weaned down to 5 mg. I get to go completely off of it Jan. 13th. Scared of what other side effects might occur from coming off the drug. While on it I've had emotional problems, acne(never had a problem with it before), moon face, gained 30 pounds, joint pain (I was in therapy for as long as insurance covered. - I recommend water therapy, it helps for some people as it did me), trouble sleeping (haven't slept a full night since I got sick), certain days I'm really really thirsty, I've had sort of what I'd call restless leg (I had this before I was on this medicine but it has gotten significantly worse - mostly at night or when lying down), and dry skin.I have to say though that the WORST side effect is the FOG. It's horrible. I enjoy learning and using my brain and when I'm on this I can't think, I mix up words, and it feels like my brain is covered in cobwebs.I had to drop a calc 2 class and that got me off the track I'd set with my academics. My inflammation rate is down where it's supposed to be as of the last blood test a couple weeks ago. So I guess the Prednisone and Remicade are doing what they are supposed to - but I still don't feel as if the pain (not associated with Prednisone - caused by the disease) has gone completely away even if the inflammation has gone down. And Prednisone's effects are just horrible. Some nights I feel depressed and just want to cry and cry. The past months have been trying because of several hospital stays, switching to many different doctors (gastrointernologists, nephrologist, urologist (kidney stones), primary doctor - and they think maybe I should see a rheumatologist), and Pentasa (it began shutting my kidneys down). I just hope that when I come off the Prednisone the side effects will fade (hopefully quickly but lets be realistic - ill just be happy if they go away sometime in the next few months) and I won't flare up again. Anyone know the best way to get rid of the weight? I'm already drinking lots of water and I go walking and do exercises everyday. QUESTION: When tapering Prednisone does anyone have a place(s) on their stomach that are sunken in and feels dry compared to the skin around it? Anyways, I hope that everyone overcomes their difficulties, whatever they might be or concern. It's hard to have a life when you are constantly fighting your own body to stay healthy.There are plenty of situations in life that are already hard enough to deal with without medical issues of your own. Best of luck to all!
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Reply about 1 year ago on Jan 04, 2008 by dima82, #3805

Hi. You'll get to your normal weight after a few months after you get off corticosteroids. The following supplements have helped me with their side effects: 2-3g of the Omega-3 fats (use "cod liver oil" because it also will supply A & D vitamins). 5-10g of L-Glutamine -- it will help your immune system and steroid-induced muscle wasting. Consider high-quality (not one-a-day) vitamin-mineral complex ("Nutrient 950" fr. the Pure Encapsulations is a very good example). In addition, an "Adrenal Complex" (for example, the one from the "designs for health) might be helpful in rejuvenating "tired" adrenal glands. Be healthy, and, if at all possible, try to stay away from Prednisone.

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Reply about 1 year ago on Jan 04, 2008 by 47140, #3819

I agree with the comment in the previous post. If at all possible, STAY AWAY FROM PREDNISONE!!!

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Reply about 1 year ago on Jan 06, 2008 by lostris, #3868

YOUR POST WAS EDITED FOR CONTENT AND/OR SPELLING: Survivors Of Prednisone Type: Common Interest - Health & Wellness Description: Many of those with auto-immune diseases such as Crohn's Disease are forced to go on a prescribed steroid known as Prednisone. The effects of Prednisone are terrible. Prednisone creates water retention (puffiness) in your face and torso. It causes severe mood swings. It also causes your hair to fall out. And that is just going on the Prednisone. Once you get off the Prednisone, you then have to deal with the adrenal insufficiency as Prednisone can shut down your adrenal glands. There seems to be little support for people who have been on Prednisone. They seem to be left alone to deal with the side effects and the confusion and fear that it causes. This is what this group aims to do: Create a support for People on Prednisone or who have been on Prednisone :) http://www.facebook.com/group.php?gid=7321407847Provide awareness of how Prednisone can and has affected lives. So if you are feeling down or suffering from crazy mood swings or can't handle looking in the mirror anymore then come and let it all out !

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Reply about 1 year ago on May 30, 2008 by dreampop, #8762

agree with dima.... this is not the first time I was on prednisone... I was on it like 12 years ago when I had a kidney problem called nephrotic syndrome... Prednisone did work for me... months I've been on it... twelve years after.. it came back so I had to be on it again for 6 months... I shaved off my hair because it was falling off... could be because I was losing protein in my body or could be because of prednisone.... so I'm growing my hair back and eating high protein food and no salt diet...

Your weight will drop in months time, as you get off it gradually.. you might experience poor appetite..joint pains, back pains...doesnt mean you're off in two or three weeks... all side-effects will go away.. its still in your blood
and will take months before it gets out of your system...

just healthy food, exercise, and drink water...

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