Crohn s symptoms and conditions

Hello,
How long do side effects last after completing steroid treatment? I've been off of pred for 4 months for crohn's first time. I was on 40/30/20/10 for a 6 week period. When I got to 30 my legs went into extreme pain. They felt like they were on fire, burning knees. Went to several doctors. One said steroid withdrawal, one said inflammation of nerves from Crohn's. Neurologist put me on neurontin to get off of the pain meds. I am still in excruciating pain and wondering if it really is steroid withdrawal. I can barely walk at times with extreme sharp pains, like someone is stabbing me in the legs. Can't stand for long periods of time and pain pills barely touch the pain. During steroid treatment, they gave me 3 rounds of Dilaudid in the ER and I was still crying, and I don't cry. Has anybody ever had this effect this long after being off the drug??

I can't believe that after months of searching for an answer to my daughter's health problems I may have found it! My daughter was a healthy, active happy child until recently. She is 17 and started experiencing joint, bone and muscle pain and swelling, unexplained rashes, migraines, tingling in her hands and feet and was diagnosed with neurocardiogenic synchrony (heart rate and bp out of synch) shortly after her first shot (she was 14).

We have been to a rheumatologist for the joint pains, they did blood work and there is a marker for some sort of auto immune disorder, but nothing specific.

I never connected the dots to the shots. In January of this year she started having severe diarrhea, stomach and intestinal pains. She has no energy, the most basic activities wear her out. We ended up at a gastroenterologist looking for a diagnosis (they thought it was Crohn's or lupus). All the tests have come back negative, they said she had gastritis and blew us off. She is on medicine for the intestinal pain, a prescription for an antacid for gastritis and an anti-inflammatory for the joint and bone pain.

She was a straight "A" student up to January and has had to finish her junior year at home. It has been a very stressful experience for all of us.

Reading all this horrifies me since I have been on Remicade for almost 4 years for Crohn's and a still unidentified Inflammatory arthritis of some kind. I will pray for you all. But, on another note and by no means an attempt to diminish the severity of each account in this blog, I have had no such side effects and for the most part have had great success until recently. My Crohn's is and has been in complete remission since the beginning of the infusions. However, I have had increasing inflammatory issues in joints between infusions. I get 5 vials and they give me Solumedrol in the IV. I ended up in the ER last night because my joints were all frozen up and it was just unbearable. They gave me Solumedrol and Morphine, and I am 75% better today. The frequency and severity of the arthritis issues has gotten increasingly worse over the last 6-8 months. I get infusions every 8 weeks, and start to have severe joint pain after about 4 weeks. All that being said, it is appearing like Remicade is still working brilliantly for Crohn's but is having little to no effect on the inflammatory arthritis. The steroid they give during the infusion is what I think is doing the job for the joint pain since I was a 10 last night in the ER, and I am 3 this morning pain wise after getting the steroid. My case is unique and frustrating to the Rheumy b/c my sed rates and RA factures and C-Reactives are all relatively normal when I am in tremendous pain. So, they just ran alternate tests the other day to look into things like Myeloma and so on. I don't believe that Remicade has done any of this. I believe that Remicade's benefits for MOST people greatly outweigh the risks, especially when you are incapacitated with Crohn's etc. But in my case, it just does not seem to be working for my joint inflammation.

I was diagnosed with Crohn's back in the 80's finally, after suffering since I was 12 and being told I was a child with a "nervous" stomach...dad used to tease me because I had to use every bathroom I came across, not realizing there was a problem. I had a portion of my bowel removed in 84 - the ileum valve along with a portion of the upper and lower bowel surrounding it, which, at the time was the most diseased portions. Removing the valve means that I must inject vitamin b-12 for the rest of my life as that valve is the place - the only place in your body that absorbs and uptakes that vitamin for you. As with any inflammatory disease, other inflammatory problems can occur because of the high inflammation running in your body. For me, this meant a form of arthritis, rheumatism or whatever. Doc wants me to go to the rheumatologist, but so far I have gotten by without YET another diagnosis on my plate. Before the surgery I asked my internal specialist if seeing a nutritionist would help me. I was so, so sick at the time. He scoffed, looked disgusted and asked what do you eat that makes you sick? I said everything. He said, then what is a nutritionist going to tell you to eat that isn't going to make you sick? At the time, I was so sick I just wanted to die and accepted that as an answer. After the surgery and many courses of different drugs for Crohn's - all of them with side effects that kept me from living a "normal" life - all side effects seeming worse than the actual disease itself I did a tremendous amount of studying on the history of Crohn's.- Burrill B. Crohn (1884-1983) was the man to discover it. In one of the articles I read he prescribed a very low carb diet to his patients which seemed to help in the majority of them to keep flare ups at a minimum. I have found, through years of experimentation with different diets ranging from health food diets on down the line, that the low-carb diet keeps my disease in check. People are like kids though. They don't always do what they know is good for them. I love chocolate, breads and sweets. In some studies I have read that you crave what may be bad for you because the bacteria your gut harbors wants to live and makes you crave what it needs to live. So, when I yank carbs from my diet - after the initial withdrawal stage and cleaning out of the gut from having done so (much diarrhea), I begin to feel almost like a normal person again with energy and pain-free. I slowly introduce fruit back in - but, through a series of colonics I had some years back, the practitioner was able to determine many foods I was allergic to just by noticing what comes out in the movement that has not been digested. Apples I can have, but not the peel. Cantaloupes - no - watermelon - not very often, etc... you can mostly tell by looking at the stool what your body is rejecting. It is its way of telling you what not to eat. Like a kid though, I stray from what I know has been tried and true and when I stray too long, joint pain comes on with a vengeance. That is when I get slapped back on the steroids to get the inflammation to back off again. When I'm not on the diet the joint pain can be controlled with Celebrex, but, when not on the diet and not taking Celebrex, the pain is out of control and has to get reeled back in with a course of steroids. So, if I can stop being a stupid kid (I'm 50) and just friggin' do what I know I need to do, I'm 95% pain-free and medication free. I have stayed mostly med free now since I was diagnosed in 84 or so through the no-carb method. The only times I had to take meds for this was when I was stupid with food for too long and one other - I had a kidney infection that I didn't know I had. It threw the Crohn's out of remission big time causing me to have to be on heavy-duty antibiotics, steroids, etc. It nearly put me in the hospital. I thought I was having a Crohn's flare-up only, but turned out the kidney infection was there and caused the flare-up - inflammation - when it hits you anywhere in your body it can cause that Crohn's to rear its ugly head. It took them years to diagnose me and through my own trial and error, I have learned how to live nearly and mostly drug free with this disease. For me, the drugs and effects are worse than the disease itself. The drugs make it hard for me to work and live. I can live near normal without them and with the diet. Your doctors will tell you differently. Doctors are put through med school on grants from pharmaceutical companies, therefore, they only learn how to treat with meds - they get kick backs from the meds they prescribe too. They do not learn how to treat through nutrition, nor do they want you to know that either. There's big money in meds - look around at all the hospitals and the many, many people taking all these drugs - synthetic drugs that are created to mimic receptors in your body so that your body accepts them, only to have to work hard to throw off the toxic substances - the synthetics they are created with so they can be patented. It is the PRACTICE of medicine and they are PRACTICING on you. Do your own research and study and conduct your own trials. I'm not saying don't go to your doc and don't take the meds - get it under control, but once you have it under control, find a way to keep it there as drug-free as possible. Your liver that has to process the toxicity of those meds will thank you for it. Your entire body will thank you for it. When the bad flare-ups happen, get your juicer out and drink nothing but fresh juices for 3-4 days. Juices are pre-digested. Your body doesn't have to work hard to assimilate the nutrients in them. Did you know that your body never does anything MORE strenuous than digesting? You could run a marathon and the amount of energy your body expends would not even come close to the energy it takes to digest your food! When you are ill - pull the food so your body can free that energy for your healing. You won't believe how much better you'll feel. Once you get it reeled back in by only having liquid for a couple of days, make sure your starch and sugar intake are lower when you begin to eat again. The bacteria in your gut feeds on carbs - starches and sugar. A good read is Marilyn and Harvey Diamond's "Fit For Life" - it has a good explanation as to how the digestive system operates - how the bacteria works - how your body has different acids that are used to digest your foods and how some of the acids that digest some foods do not mix well with other digestive juices and how to avoid that combination. This has been my trial and error - I prefer to NOT have to see the doc for Crohn's often...I haven't been to a gastro guy in 9 years or so. I do have a regular doc that, if I have flare-ups, will put me on a course of steroids for a couple of weeks to reel it back in, but the fact that it has to be reeled back in at all is my own fault because I was a bad little girl and didn't watch what I ate. For me - that's the simple solution - the food. But, you have to get it under control first before you go that route. I take the drugs til I feel better. Then I get off them and mind the diet. By the way - the arthritis - when on the diet troubles me very little. When I'm high carbing and high sugaring - the arthritis KILLS me... hope this helps any of you... I have studied this disease and nutrition since my diagnosis in the 80's... if I had it to do over again, I would go back to school and become a nutritionist...

Hi All,

I was diagnosed with dermatologists when I was 14 years old and put on very high dosage of prednisone to get my disease under control (40 mg a day at the beginning). My muscle enzymes were out of control (CPK was almost 8,500 when it should be less than 215) and I was barely mobile, huge amounts of weight loss, alopecia, Raynaud's, etc. That was 11 years ago and I am now almost 100% better. Prednisone saved my life, but the side-effects were TERRIBLE! Especially for a girl going through puberty. Kids at school don't understand you're sick, and they can be extremely cruel. Luckily for me a large number of my family members are in the medical profession all over the world and my parents were able to pool knowledge to find the best treatment for me without all the horrible side effects. An uncle in Germany suggested I take a Prednisone alternative widely available in Europe called Diflazacort. This medicine is not available in the states apparently because the FDA thought it was exactly like Prednisone so was unnecessary. I'm sure this is some pharmaceutical company lobbying to preserve Prednisone's monopoly on inflammatory diseases, but regardless it makes finding Diflazacort difficult for Americans. This is a HUGE shame since this medicine gave me ALL of the benefits of Prednisone with NONE of the side effects. My mood swings, water retention, increased appetite, hazy brain, thinning skin, etc etc etc ALL stopped with Diflazacort. This wasn't only true for me either. A family friend had been diagnosed with Crohn's at the time and he was put on Diflazacort from the beginning of his treatment after seeing how I reacted to it and NEVER had any of the negative side effects I had to deal with. Really this drug was like a miracle for me. Prednisone prevented my sure death, but Diflazacort gave me my life back in its entirety. I've now been off of any steroid for 7 years and my muscles are fully back to normal. Some of the fat deposits Predinose caused still linger, but to most people's eyes I'm totally back to normal. I wish I could find everyone having problems with Prednisone side-effects and tell them about Diflazacort. Even though it isn't available in the states (although I heard recently they are trying to get it approved again since a number of studies showed Diflazacort is much more effective treating Crohn's than Prednisone is) you can get it on the internet or if you have doctor friends abroad as I did. I'm always wary of buying drugs over the internet since there's no control so I would suggest contacting doctors in Europe or Asia directly or through your doctor here in the states. Anyways, I wanted everyone to know that some people do get better and I wish you all the best of luck!

Hi All,

I was diagnosed with dermatologists when I was 14 years old and put on very high dosage of prednisone to get my disease under control (40 mg a day at the beginning). My muscle enzymes were out of control (CPK was almost 8,500 when it should be s no control so I would suggest contacting doctors in Europe or Asia directly or through your doctor here in the states. Anyways, I wanted everyone to know that some people do get better and I wish you all the best of luck!

I have Crohns and had a flare up so I'm back on 40mg of Prednisone. I've been on 40mg now for 3 weeks and I start to tapper off in another 3 weeks. Well every time I start the prednisone again I get new side effects. This time, my gum are bleeding all the time and the pain in my knees are horrible! I still get the regular side effects, ie: Mood swings, joint pain, sleeplessness, sweating, swelling of my legs and hands, wanting to eat everything under the sun, moon face and my hair falls out! I wish the drug manufactures could develop a drug that would not be so hard on our bodies. I have to struggle with the pros and cons with every flare up. Do I want the weight gain, mood swings and hair loss or do I want to look good and be very sick! I'm 37 and was 16 when I found out I had Crohns.

My mom had Crohn's & just passed away at the age of 44. My mom died from a enlarged heart in which was due to taking Remicade for many years. We started getting stuff in the mail about all the side effects & worst things that could happen. Well it happened all the WORST things you could think of. IF YOU LOVE SOMEONE TAKING THIS MEDICAN let them know what it does !! I'm getting married in October, & my mother will not be there, due to DEATH FROM REMICADE !!

Good Luck to those on it, & try to get off !!

I have been diagnosed with Crohn's. I have been on Prednisone since 1992. I have the shakes, excessive sweating, moon face, exhaustion, teeth falling out, mood swings. This ' wonder drug' must not be prescribed arbitrarily and doctors must sit down and council patients properly when they have to take this drug over a long term.

I was on Prednisone for a year and weened myself off because of the side effects.I'm back on it now and can't wait to be off again.Not that i felt that much better off of it.They started giving it to me through my i.v. in the hospital about 2 weeks ago.I was admitted for a Crohn's Colitis flare up and dehydration.The first 3 days were ok but then i felt the Prednisone kick in.It wasn't that bad until i left the hospital and started 40 mgs by mouth.I couldnt really sleep at all.Really bad panic attacks.Crazy dreams, hearing voices.I'd wake up every 20 min. dripping with sweat.I'd panic all day and night.Now I'm being weened off and am taking 20 mgs.I'm really weak.Can hardly type this.Its hard to walk.My arms and legs feel so weird.I'm having a really hard time concentrating.I feel like I'm on drugs all the time.Really dizzy,every things funny looking.Its like a really bad panic attack that never goes away.I have 2 more days then I'm down to 10mgs.Then another 7 days then I'm off.Hopefully this will all pass and i can be normal again.I can't live like this.I don't even know if any of this is making sense.I hope all is well with everyone of you and will keep you in my prayers.Hopefully we'll all be normal again soon.God bless,Carl

OMG! It's 4:45 a.m. where I live and I just found this site...what a Godsend. I thought I was going crazy! I've had almost all of the symptoms everyone has listed here the worst being insomnia,racing heart rate(at night)and feeling like I can't breathe! WOW! I have been on this med for almost 4 years now(10mg/day,down from 12mg/day with HCTZ)and I think it's time to STOP! I've honestly felt so horrible that dying didn't sound like such a bad idea...hate to say that but it's true. My Doc. does not think that this drug is causing these problems and just wants to give me more drugs! I'm a 36 year old female that used to be the picture of health...not anymore. I'm going to stop this medication a.s.a.p. and would urge others to do the same...the side effects are worse than the so called 'cure!' Please email if you'd like to discuss further. Thanks to everyone! You have saved me!

I have a condition called Myositis and for the past two years the specialists put me on Prednisone, my condition of myositis is an Autoimmune problem that degenerates the muscles and causes artherites throughout the joints in the body.
I am 58 years of age and survive the chronic pain by taking 5 Mg of prednisone each day along with different types of anti inflaminetery pain killers.
Some days are good and other days require a wheel chair to get around but the side effects of this have caused Cateracts in both eyes, fatty liver tissues and other side effects like mood swings and so on.....