Uc symptoms and conditions

Male 28. Was diagnosed a couple of months ago with Ulcerative Colitis and was prescribed Prednisone. A large dose to start with then tampered off for 4 weeks. The first week I felt great, better than great, fantastic. The only downside was difficulty sleeping. The following 3 weeks, without any exaggeration have been among the worst I have ever experienced. I think the lack of sleep finally caught up with me, so I was constantly tired and generically felt depressed, also knee ache, eye pain, inability to think clearly (quite a problem when you are an Engineer), lacked energy or strength – and the Acne. Never before have I had Acne like this, and I used to suffer quite bad during my teens. Its just so aggressive, every few hours there seems to be new ones appearing. It seems to occur when ever I step down the dose. I think having this bad skin has really added to my depression over the last few weeks, it has been especially difficult considering I have been in the process of starting a new job. To top all of that my UC seems to be worst than ever! I’m worried that when I go back to see the Doctor next week he is going to put me on some equally-annoying medication or maybe another course of Prednisone if I’m lucky.

Does anyone know of some natural alternatives that are good for UC, very reluctant to put anymore man-made chemicals into my body.

They think that I have either crohns or ulcerative colitis. I have tried antibiotics, lialda, mesalamine enemas, with no improvement. After another colonoscopy they put me on prednisone at 40mgs, 30, 20, 10, then 5 decreasing weekly. Well the first week was okay. I had some of the side affects, insomnia, extreme hunger, and crazy. I could deal with that. But then when I decreased down to 30mg, my body flipped. I awoke from the middle of the night with burning pain in the knees. So bad I took 4 ibuprofen and threw myself in the tub with epsom salt. I thought okay that was weird because I have never had a joint pain in my life. I saw the gastroenterologist that day bc I was still having abdominal pain. He totally blew off the knee pain and said he had no idea what that was. I thought okay maybe it will go away. A few days went by and nothing. 3 days later and I awoke one morning crying in pain because of my legs. I called the on call doctor who also said he had no idea and go to the er. So I went crying hysterically for 4 hours. Even after 3 rounds of dilaudid I was still in pain. They suggested a Rheumatologist. So I went to one a week later who said I was going through steroid withdrawals. And there is nothing we can do but treat the symptoms of pain. I am now down to 10mgs have been out of work for 2 weeks and am absolutely miserable with severe leg pain, muscle weakness and fatigue. He also adjusted the drop down increments to 5 instead of 10. Anyway I will never take this drug again and I think they rushed to this one. Just wanted to share. I am glad I found this website because I went from a fully functioning physically fit 28 year old to a crippled crying crazy person. I think I was scaring my husband, honestly, until we both read some of your postings which were similar.

Shortness of breath has continued to worsen as its built up in my system. Chest pain and back pain on my left side seem to be worsening as well. I started Imuran as opposed to using Prednisone which is much harsher on your internal organs, but I am hard pressed to think anything could be worse then what I feel now. I have not lost my appetite, but the fatigue is unbearable even after I've eaten.

My daughter is 12 and just started taking Prednisone 5 days ago (40mg - she weighs 105lbs) .. I've been watching her salt intake - tonight she looks a little pale to me - is that a side effect? has anyone else experienced that? She has Ulcerative colitis (2 years this month) - started w/asacol, colazol, 6mp (gave her pancreatits) now is on methotrexate since Nov '07 - was put on prednisone because of a recent flare - to me none of these medications have put her into remisson - always goes 3-5 times a day - sometimes blood - sometimes not - don't know if prednisone will help - so afraid of the side effects -
Dr. said if it doesn't - Remicade will be the next option - after that surgery - only thing - my daughter has never complained of pain - except when she was on 6mp -
sorry for babbling - just so scared...

Prescribed Prednisol & Predsol June 2007 for acute ulcerative colitis. Three months, oral and rectal, got it under control.September 07 got large fluid appearances both knees which took two weeks to subside completely.
Soon after & whilst playing golf got stabbing pain left Achilles. Repaired by op. Thereafter commenced getting aches in muscles and joints and generally across entire body structure. Extreme pain in rt hip, imaged and shown as necrosis of femur joint. April 08 rt hip joint replaced. Continual muscular pain overnight which abates with movement during day causes sleep deprivation and consequential lethargy.
Most interested in proven supplements and/or prescription antidote!

a full week after my first remicade treatment, i suddenly developed a very severe headache, followed by a stiff neck, a stiff left arm, a sore jaw where i couldn't open my mouth very far and i could not chew, then developed a fever, chills and itching. It came on fast but also subsided a good bit within about 12 hours. has anyone else experienced something like this, a full week after a treatment?

I was put on Prednisone for my COPD. Right after starting a 30 day script (I don't remember the dosage) I started experiencing SEVERE muscle cramps. Legs, feet, hands, abdomen, ribs, back. It was the most terrible experience I have ever had and I refuse to take it again. I also gained 30 lbs in 30 days. Which I have had extreme difficulty taking back off. I am now, two years later, experiencing great difficulty with my knees. I believe that I will always suffer the side effects of this, yet another, wonder drug. The wonder is how many people's lives is it ruining...

I have been diagnosed with Ulceritive Colitis as well. I am about to be put on 30mg of prednisone and am terrified of these effects. I've gathered a lot of useful information from this forum and am thankful for that. Imuran, azothioprine, and remecade seem to be the most successful drugs as alternatives to prednisone. I'll ask my doctor about all three and hopefully I can avoid the prednisone. I'll be sure to post my results soon.

The arthritis/crohn’s disease drug Remicade, manufactured by Centocor is a deadly drug and should be taken off the market. The drug has caused death and permanent damage to patients across the world. The drug company makes billions of dollars and downplays the side effects including the increased risk of lymphoma and blood problems. The company downplays infusion-related reactions saying that those reactions usually occur within 1-2 hours post infusion. Here’s the truth:

*Centocor has been reprimanded by the FDA for publishing false claims in its marketing literature given to physicians. See FDA website for official document.

*The literature lists syncope (drop in blood pressure), bradycardia (slowed heartrate), pancytopenia (dangerous drop in blood cells..platelets, whit blood cells, red blood cells etc, increased risk of lymphoma, serum sickness. The literature says to call MD if you are “pale”.

*Here is a case of what happened to a woman in her 30’s with rheumatoid arthritis after only the 2nd infusion. She was not on methotrexate at all so this is all Remicade’s fault. Approximately 2-3 days after the 2nd infusion the patient began to feel tired and sore but still worked an 8 hour shift that day. By 12 midnight the patient’s entire body flared up…every joint was literally swollen and she was vomiting violently.. She could barely get to a phone to call for help. Her blood pressure dropped to 50/40 and all of her blood counts plummeted. Her Sedimentation Rate (which measures inflammation had always been below 2 and it spiked to 29!!!) Remicade caused the opposite of what it was supposed to do. It also increased greatly her C-Reactive Protein which is also a measurement of inflammation and can cause cardiac inflammatory processes as well increasing the risk of cardiac damage. The nurse in the triage area told the patient that if she had not called for help SHE WOULD HAVE DIED !!! She ended up in the hospital for 5 days in an isolation room. She was in excruciating pain and had to be given Oxycontin every 12 hours and Dilaudid IV every 2 hours to control the pain. For the first 2-3 days she could not even walk or go to the bathroom without assistance. She was given high doses of prednisone to decrease the inflammatory process and get her pain under control. A hematologist performed a bone marrow biopsy which revealed an abnormal population of plasma cells that can develop into myeloma or lymphoma. The hematologist said that the patient would have to be monitored lifelong to watch the pre-cancerous cells. The patient was out of work for 3 months and was forced to change jobs because of her fatigue level and short term memory problems. She also suffered post-traumatic stress due to her near-death experience and total upheaval in her life. She is a healthcare professional. Even 4 years after the reaction her blood counts are still abnormal and she has still had short term memory problems and vision problems.

I have had 1 remicade infusion so far for ulcerative colitis. The next day a bunch of spots appeared on my lower legs. There were 30-40 of them, small, roundish, purple/dark red. They looked like blood spots under the skin.
It wasn't a rash and they didn't itch or hurt. My doc had no explanation, and I haven't heard of anyone else having this reaction. They checked my blood for a clotting problem and didn't find anything. The spots faded away over a week or so. My next infusion is in 2 days, so we'll see if they reappear.
I have also been experiencing a weird kind of insomnia where I am so physically antsy I CANNOT keep lying still, I have to shake my body or kick my legs or something. I read up on restless legs syndrome and the symptoms sure sound like what I am experiencing. I don't know if it's connected to the Remicade - I read that iron deficiency can also cause it and I am anemic due to the UC. But since Remicade can disturb the central nervous syndrome, it seems possible. Anyone else experience RLS with Remicade?

My son has side effect following third infusing...headache, acne like pimples, rash, mood swings, lose of short term memory, frequent urination, stomach spasms, and over all total body ache...now six weeks after last infusion...seeing two dermatologists, his regular doctor, and having to take a two week leave from work...my son finally showing improvement..his gastro Dr. wants him to go on with treatments of remicade...No, No, No...

I was put on Prednisonsone for Uveitis, inflammation of the eye. He started me on 20mg at 9 pills a day, then each week it was lowered to 6 pills then now i'm on 3 pills and then next week it will be 1 1/2 pill and i'll be off. I got the puffy face, my feet swelled, everytime i hate my stomach bloated and hurt, my face and neck turns red, i stayed hungry although i fought the temptation of eating for not wanting to gain a lot of weight, which I don't think I've gained any. But now I wake up in the middle of the night and severe knee pain, it feels like my knees they are in some kind of device that is crushing my bones they hurt so bad. i caught a bad cough and it's been around now for about 2 weeks and won't go away, i told the nurse about it and she says, i probably just got what everyone else has gotten, just a bad cough, well what's if it's some kind of infection? I look like a chipmunk, my face is so puffy. When i get off these prednisone in another week I WON'T BE going back on them, no matter what the case. I'm in more pain being on them and have more side effects while on them than the problem i was having with uveitis. I think some co workers thank I'm over reacting, but they're not here they don't see all the pain and frustration i'm going through while on this drug. The leg pain just started this weekend and i Know i can't deal with waking up everynight like this in severe pain. Everyone just makes me feel like i'm over reactin and it's nice to know that somebody out there is going through the same thing. Any comments will be great.

I had my first infusion of remicade with the benadryl on Tuesday since then I have had a very bad headache, stemming from the back of neck all the way over my left side to my eye and also a very painful stiff neck. I am literally inches away from surgery to remove my large intestine and this was my last chance. The good news is that it seems to be working for the UC but I am not sure I want to live with these headaches it is awful.

I had a kidney transplant a year and half ago, and had to take Prednisone as one of my post-transplant med's. I was on it for about 2 months and I went through a lot of the same side effects mentioned by other people, increased appetite and weight gain in odd places, sleeplessness, and acne. Then recently I had an allergic reaction to an antibiotic and was again prescribed prednisone for three weeks, but this time the acne is so bad it looks like a rash, and it's all over my back, chest, neck especially, and on my face. I can deal with it because I realize it's what I need to do, and I am grateful that there is a drug that can treat the symptoms from the allergy, but I am wondering how long it will take for the acne to clear up once I finish the 3 weeks? Does anyone know how long it takes when you've been on it for that amount of time? Any thoughts would be helpful. Thanks.
Megan

I was prescribed to take 30mg/day (Prednisone) to try to reduce the inflammation brought upon by Ulcerative Colitis. I have taken Prednisone before....up to 60mg/day, when I was first diagnosed with UC. I don't really remember all of the side effects I experienced, but I do remember my calves and feet swelling, a bit a of moon face and very little weight gain due to the UC. Does anyone have any suggestions to how/and when I should take the daily dose of Prednisone (early morning, with food...what kind of food)? Also, I would love to hear from anyone with Ulcerative Colitis and how they are coping with the disease. From their diet when in remission to during a flare-up! Thanks...

I'm 17 years old, and I have Ulcerative Colitis. I was diagnosed at 15, and was put on Prednisone then for three months. I didn't gain much weight in my tummy that time, but my face swelled to huge proportions, and while ON the drug, my hair grew like crazy but was very dull and lifeless at the same time. The minute I stopped the drug, my hair started falling out. Within a month, I had lost 40% of my hair.

Well, I'm on it again, and this time it's worse. I started out at 40mg back in October, and am down to 20mg now, but it's just as bad as when I started. I'm VERY moody and snap at my best friends, who I am usually the calmest around. I often find myself just wanting to hit and yell at something. Before I started Pred, I weighed 138. I weighed myself yesterday... 150.2. This is very disheartening. I have a moon face, the makings of a double chin, unhealthy hair, I wake up about 5 times every night because I'm restless or I have to pee, I can't focus in school, my knees hurt, etcetera. I'm miserable.

I work out 6-7 times a week because I'm so concerned about my weight. I do 30-45 minutes of the treadmill and/or elliptical, and do all the happy little toning machines, in hopes that my tummy can be a bit more toned. But no. It's a useless blob. None of my favorite jeans or shirts fit me anymore, and this - not the drug itself, but the side effects - make me very, very unhappy.

Denise,

I posted on this many months ago. I have had chronic ulcerative colitis for many years, but had undergone a remission that lasted 12 years. Unfortunately, after I had been on the yasmine for about a year or so, I too started having the anxiety, panic, and worse of all, my UC flaired up very bad and I had to go on steroids because nothing else helped.
It was only after I discontinued the yasmine (my internist told me that yasmine was a very, very bad pill and to get off it immediately--she said she had other UC patients who flaired on this particular BC pill), finally my UC went into remission.
It has taken over a year for me to feel really good again. I would warn anyone with any type of intestinal illness to stand very clear of this med.
I hope you feel better soon.

On an 8-week taper down from 80mg for ulcerative colitis. Lost 30 pounds from UC and was bedridden, miserable, and fully dehydrated for about 3 weeks before hospitalization. I was very worried about taking Prednisone due to past reactions (primarily insomnia and associated extreme emotional distress). My UC responded immediately to the Prednisone, and I went from 20+ daily bowel movements to 2-3 in a matter of 3 days. I'm now 2 weeks in to the taper, taking 30mg and feeling completely refreshed.

Definitely having some negative reactions. I've been taking Ambien nightly for 2 weeks, permitting 6-8 hours of restless sleep, waking every 15-30 minutes. The first time I took predinose, I did not take any sleep aids. I did not sleep for over 3 days and extremely sporadically for the following 2 weeks, with frequent auditory hallucinations.(So 6-8 hours of restless sleep is fine by me). My face is very bloated, acne breaking out worse than ever, insatiable hunger(gaining my weight back too quickly), muscle weakness-spasms-cramping, abnormally pulse/blood pressure, and fatigue/unnatural energy. Had severe dizziness and headrushes for the first 3-4 days before tapering to 40 mg.

All in all, I'm very thankful for the results. I feel considerable relief. My apartment is spotless, I have heightened concentration and motivation. Hopefully the negative effects will dissipate by the end of my dosage, and I won't be too far overweight.

I have been on and off prednisone for about 4 years now. I was first daignosed with ulcerative colitis when i was 17 and took doses ranging from 15 to 50mg at its worst. I was also on immuran for treatment of UC. About 5 months ago i suffered acute renal failure and was diagnosed with nephritis minimal change. I was initially on 80mg a day and slowly weened off no getting down to 25mg and continuing to lower the doaage. Also on cyclosporine and a host of other drugs to combat the side effects of prdnisone. I sympathise with anyone who has to take the aweful drug. I have experienced just about all of the side effects mentioned on this forum. It is a debilitating drug not only physically and phsycologically but very much emotionally too. If anyone wants to talk. Please e-mail me. It is had to talk to people who dont know what you are going through and have been through.