Crohn s disease symptoms and conditions

I'm so glad I'm not alone. I was diagnosed with Crohn's disease in July 2008, so I was placed on really strong medication the cut the effect of my current BC to 50%. So I decided to have the Mirena placed. It was placed Jan. 2009. A few weeks later, I experienced tenderness and swelling in both my breast. I went to see my GYN and she said it was normal and it should subside soon, but she sent me for an UltraSound to make sure. The results showed that my milk ducts were dilated. (And I was not Pregnant) A few months later I was experiencing severe depression, mood swings,bloating, facial acne, cramps, but the worst one of them all was the itching in my breast. Not to mention the 25 lb weight gain and my breast doubled in size. I would eat at any given time and had cravings. I felt like I was pregnant all the time. When I mentioned the itching to my doctor, she said I needed to see a dermatologist. I saw one the same day, and he also said he thinks it's the hormones in the Mirena. So I had it removed today. I hope everything goes back to normal.....

I have been taking 8 500 mg caps of pentasa a day for over seven years for what doctors told me was Crohn's Disease. I just found out that I don't have Crohn's Disease and I am in shock not to mention that I have lost over fifty pounds and in bad stomach and back pain. What is going on. I will add that the four day hospital stay has really hurt me emotionally, money wise and I am heart sick. Patricia

iv been diagnosed with crohns 2months ago iv now been on prednisone for 4weeks i started on 40mg and now down 2 15 the last week my ankles have swelled up and now my right ankle is so painful to touch and walk on, and nothing is making it better, pain killers don't work, massaging it doesn't work, putting deep heat on it so to night i iced it for 15 mins and put a heat pack on it several times the pain went away for 10mins and came back its so painful im almost in tears, im down 2 15mg now so im not eating as muchas i was b4 i wasn't getting full i just keeped eating, my mood swings arnt as bad iv got moon face as they call it and i hate it as theirs no shape at all 2 my face, im getting pimples as will iv retained all this fluid and i feel like a marshmallow can someone please tell me that this pain will go away or is their something i can take 2 make it go away this is the worst medication in the whole world when i get off the prednisone and i have another flar up id rather have the runs and stomach cramps then all this drama iv been having in the last 3weeks iv also changes my whole diet and its made a huge difference 2 how i feel

I was put on 20 mg twice a day to combat my Crohn's Disease. A few days in, I began having trouble sleeping because of a heart beat that was making my whole torso and head throb. Exactly one week in, I woke up with a bad headache and nausea. I got out of bed and my heart started racing. I couldn't take my pulse at the time, but my estimate is about 150 beats/minute. The doctor accelerated my tapering in response to this episode. Right now I am taking 30 mg a day, but I still experience a heart rate in the 130's and chest pain several times a day unrelated to physical activity. I will say, however, that all the symptoms of my Crohn's Disease have really been diminished by this drug, and so far I am willing to accept these side effects.

I was diagnosed with Rheumatoid arthritis at the end of 2007 and have been on prednisone since then. I started on about 105mg a week and am currently trying to reduce it but it is really hard as the moment the dosage goes down I lose all mobility and cannot even get out of bed. I am only 23 years old and really feeling the disease to the extent that I cannot even cope with my life. The prednisone has really taken its toll on me and the side effects are crazy! I just want to go back to my old self as I am finding it sooo hard to get through a single day. My side effects include:

Insomnia, tooth sensitivity, depression, anxiety, mood swings, moon face (my face is so swollen that I cant stand looking in the mirror anymore, dizziness, temper, feelings of uselessness, nightmares, night sweats, water retention, and to top it all off the arthritis is getting worse and I am in constant pain. Is there anything anyone can suggest then please help me!

My daughter received her first vaccine in Dec. 2007 at 15 y/o. We really didn't notice anything out of the ordinary until she received her second shot in Feb. 2008. In March of that same year she began experiencing severe abdominal pain and an unusual rash on her feet and ankles. We have been through many different tests from acid reflux to testing for Ulcerative colitis to Crohn's disease. We do not have a diagnosis as of yet but I recently realized that all of her symptoms began following her second shot. Her symptoms are severe abdominal pain (more severe while on her period), nausea, diarrhea and spotting between her periods There isn't a day that goes by that she does not have pain. She developed the rash on her feet and ankles and itching under her armpits that comes and goes (one doctor states it may be eczema) Nothing is clear to us as to what is going on. She will not be receiving the third shot! There is nothing worse than watching your child suffer as I have watched her suffer! My heart and prayers to all you moms out there and children going through such a horrible ordeal!

I originally posted about my 9 year old son on January 5th. Refer back to this for the symptoms. He had his upper and lower endoscopies on the 12th, and the lower showed numerous ulcers in the large intestine and at the beginning of the small intestine. The doctor insists that it has to be Crohn's disease based on just this and the blood work, which showed eosinophilia and elevated sedimentation. He is insistent that this has nothing to do with the Singulair and the dosage change. It's just a coincidence .... He' in the hospital for a week now. Watch for those stomach complaints! His started with poor appetite, complaining that he was full when he had hardly eaten, and vague complaints about eating giving him a stomach ache. It progressed to occasional diarrhea. It got worse quickly after that, just a few weeks.

I have Crohn's disease and have been on birth control since before my diagnosis. I use to have flare-ups of the disease every now and then (I was on Mircette). Then last year, I was put on Nortrel and my disease started acting WAY up. I was put on the NuvaRing two months ago and I am having even more flare-ups now. Is there anyone who has a digestive disease and have had their symptoms worsen with the NuvaRing?

After being treated for two major crohn's flares since 2005, I have had all the regular treatments for crohn's. Remicade gave me a liver abscess so the only choice left for Mass General Dr. I see from the MGH Crohn's and Colitis Center was Humira. It is helping to keep me in remission after a long bout early spring, but since Humira Pens were added to my treatments and medications I have had short term memory loss, lack of concentration and foggy head. I have been off and on Prednisone without the memory loss, but have had a bit of a fog due to it. This has been bad enough that after attempting over a month to get back to my teaching job, I have had to ask for a leave. Has anyone else complained about this problem with Humira?

Crohn's Disease. I took 80 - 100 mg of this double-edged sword of a drug for over a year. I never noticed the side-effects (moon face, mood swings, permanent fat tissue swelling). I was so very ill from the Crohn's that nothing else existed.

Prednisone worked wonders in the short term, but trying to get off of it was an entirely different story. This drug plays an integral role in the body and touches critical systems and weaning off of it is awful. In the past 10 years, it seems that doctors are more careful about prescribing it, but too often I think people find themselves on the other side of it and seeing how the long-term effects and side-effects have severe impacts on their life.

If you haven't started taking prednisone, make sure you read and research it before you do. It took me at least a year to get used to living without it, and I needed surgery to remove the fat-tissue under my eyes because it was so swollen.

Like many of you, I thought that the Mirena was going to be GREAT! My doctor had NOTHING negative to say about it! I have had my mirena in now for almost 2yrs. I just have to say, the weight gain is enough to depress anyone, I have even been on the slim fast diet & ate lean cuisine meals with it and I DIDN'T lose not one pound!! I am bigger now than what I was at 9 months preg.!! After I had my son, I had lost all my baby weight, all but about 3-5 odd pounds, but after I got the mirena put in, its been nothing but weight gain!!! It just keeps coming on!! I am ashamed of my weight! I also get horrible migraines, headaches, have depression for no apparent reason, really weird mood swings, I also used to get a pimple from time to time--NOT anymore, I have acne constantly and have even bought the Proactive kit and have had very little results, I feel like I am 82yrs old instead of 28!!! Haha, you want to talk about a sex drive, I no longer even have one!!! And when I do have sex, it hurts if my husband goes near my cervix, and lets not talk about the after sex pain, never mind, lets talk about it, its HORRIBLE! It feels like I am having contractions, it hurts so bad that get doubled over in pain, end up in fetal position for about 1-2 HOURS and even the following day I hurt & bleed!! And should I go on about my newly acquired MUSTACHE!!!! Oh yes. I have facial hair now as well!!! So, to any of you girls/woman who are considering getting the MIRENA---THINK HARD ABOUT IT!! Seriously!! My experience with it has been horrible! I will NEVER have them replace it when it comes time, in fact, I am opting to having mine taken OUT!!!!

Hi everyone,

i need to tell you about what just happened to me, because it seems most people are definitely not informed of all the possible side effects of prednisone - not only just relating to the dose of prednisone you take but also for how long.

I have been using prednisone for almost 14 years now, the doctors all tell me i'm unlikely to ever get off prednisone now because i've been on it too long. I know all about it's usual side effects (water retention, mood swings, thinning of all tissues including blood, acne, anemia, etc etc).

One side effect i was not advised of, not even in any educational material about prednisone either, was that long-term dependence can lead to Acute Adrenal Crisis. Which is deadly if not diagnosed and treated promptly. Thus i nearly died two weeks ago. I became rapidly ill with vague symptoms that i now know are symptoms of acute adrenal crisis. *THE ONLY REASON THE ACUTE ADRENAL CRISIS OCCURRED WAS BECAUSE OF LONG-TERM USE OF PREDNISONE*. Not many doctors will warn patients in advance of this. It is however, very very important that people are aware that long-term use of prednisone needs to be very carefully weighed with the benefits of using prednisone (i was started on prednisone in 1995 to treat severe Crohn's Disease).

Acute adrenal crisis can happen over weeks, months or years - in other words, it can come on so slowly that by the time you know there's something wrong you're already very very ill and in great danger.

I am very glad to have found this website and i hope you will all refer anyone who has any experience with prednisone to this site - education and knowledge is power - the power to stay alive.

(by the way, the treatment for acute adrenal crisis is to load up on prednisone - seems i'll probably never be free of this drug unless i can get my adrenal glands to begin working again (as prednisone "takes over" for the adrenal glands and they effectively go to sleep, and this is especially true for long-term use)).

My sympathies to everyone who has to go through the many nasty experiences with prednisone, especially the young children (I had to start it when i was 16). It really does mess with your body and mind, and in my case, became lethal.

Please pass on all your information relating to use of prednisone to everyone you can - it really is that important and seems to be the only way to avoid most of the disasters related to prednisone use.

take care everyone,
Linda
(Australia)

I too have been on a regimen of 750mg of Levaquin for an infection on my leg. On day 2 I could not figure out why my upper keft arm was hurting me so much. I as so many others, wrote it off to hanging drapes and cleaning out my pantry. Four days later the pain started in my right arm and again, I was trying to figure out what in the world was going on. It's an intense pain like I've never had before. I have Crohn's disease so I wrote some of it off to that as well. I saw my Doctor today and didn't even think about telling her about the Levaquin (different Doctor prescribed it). As I lay in bed this evening unable to sleep I decided to do some research on Levaquin as it was the only thing I could think of that was causing problems. Boy, did I discover something. Thank you all for posting your issues on this website. I will be seeing the prescribing doctor tomorrow and will let her know the outcome of the drug and will make sure that I will never be taking Levaquin again. Too bad we can't get this word out to everyone being prescribed this drug. It's dangerous and hardly worth it. There has to be something else out there that we can take. .

All that I can say is anyone taking this medication, be prepared. I am 24 years old and was diagnosed with Crohn's disease. I was in a severe flare up and was prescribe Prednisone. I looked like a balloon in the Macy's parade. Along with looking like I was 500 lbs in the face I was a woman on a rampage. I would blow up at the drop of a hat. I could not sleep, I was not the person to be around. Even after I was taken off of it, it took some serious time for me to be back to my normal self. This is an absolutely HORRIFIC drug and whomever invented it should be jailed for what it does to the people taking it.

I was diagnosed as having chrones. My doctor prescribed me with Endocort.

After taking it and still have problems I got a blood test and showed my sugar level had gone to 340- I now have diabetes.

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 been on it for two months due to severe psoriatic arthritis. I'm taking the max infusions every four weeks, methotrexate injections and prednisone. I'm tired, sleepy, sweaty and somewhat nuts a lot. However, after last week infusion, I have some type of rash-little red dots that feel like pin pricks that itch somewhat. I feel like a thousand fleas are attacking me all at one time! Has anyone had this type of feeling? PLEASE reply-it is driving me nuts.

just another update on my other 2 postings. Things have really hotted up here, lets just say the doctors surgery will get a nasty surprise in the post!! I urge anyone who has been conned into taking this drug to make a stand, sooner or later the medical community is going to have to listen. Websites like this are a godsend, but....POWER TO THE PEOPLE!!!! Give them what for, they can't brush this under the carpet for much longer and they have no right to make anyone take this drug. My doctor behaved as if nothing had happened, I nearly pegged it and they treated me like a nutcase! The most annoying thing is that I already have Crohn's Disease so I should never have been put on it, but they completely disregarded that fact, something they have been aware of for many years...NO EXCUSE at all. There is a definate cover up, have you seen the news this week??? More people are to be started on simvastatin because the government wants to save money on heart operations!!! They are either incredibly stupid (no surprises there), or have been completety sucked into the statin hype. There is going to be a massive strain on the NHS because of all the other health problems this drug causes, I saw 3 different specialists because of my sudden ill health, do they really think it will save them money??? Any one from the Government reading this?? get your bloody finger out and do something! Apart from not saving money, what cost to all that have been put on it??? what about their health? and by the way, I am the patient but I HAD to ask the doctor for a test for muscle wastage even though he knew this had been occurring, non admition of guilt then? National Health? NO National Joke and we are on the recieving end. I am not a lab monkey and don't want to be a test subject for these poxy drug companies and neither should anyone else, get RID of these awful drugs!

Hello- I am having my yearly physical tomorrow with my doctor. I am seriously considering having my Mirena removed. I have had it for 4 years now and thought that everything was going good. I have just been prescribed antidepressants for the third time in the four years. I was told that i like a lot of people cycle through a depression but now I am thinking that it is due to this. In the last year I found out that I have Crohn's disease. Could somehow this IUD have caused this? I wonder. In the last year i have gained 45lbs and cannot lose it no matter what. I have had no bleeding other than a little spotting now and then but nothing major. I do have headaches very often. I cannot believe that I was not told of these side effects when I had it inserted. My sister-in-law, who is now pregnant, plans use this birth control after she delivers. I will point her this way and let her know what I have learned. I am so glad that there are sites like this one. I will learn more about my birth control before I begin using any now. Thanks to everyone who has posted.

Hi everyone,

I am a 25 year old female who was diagnosed with Crohn's disease one year ago. I stumbled on this website and wanted to share my experiences to let others know they are not alone and that their side effects due to Prednisone are completely normal.

In Nov of 2007, I was in the hospital for a Crohn's flare up and was put on prednisone through IV (240mg/day). After a three days I was released, but one week later, had another flare up and was back in the hospital in December of 2007. This time, I stayed for 6 days and was on 240mg/day again through IV, along with taking Flagyl and fluids for my flare up and infection.

At first, I lost about 10 lbs due to the flare up and all of the medication I was on. However, within 3 weeks time, I gained 28 lbs and was a complete mess. I looked different, felt different and was emotionally and mentally drained.

My side effects included: Severe moon face, buffalo hump, increased appetite, hair thinning and severe hair loss, night sweats where I would have to change pajamas 3-4x a night, OCD to the point where I would have to clean my entire apartment (even if it was already clean), restlessness, anxiety, no sleep and sometimes I would go days without sleeping, increased thirst and dehydration, swollen eyes and headaches, depression and mood swings, upper and lower abdomen swelling and weight gain (28 lbs in 3 weeks), suicidal thoughts, unbearable muscle and joint swelling and aching, forgetfulness and memory loss, blurred vision and dark hair growth on my face near my sideburns and underneath my chin and on the bottom portion of my face. Bottom line: it was unbearable and nobody warned me about the harsh side effects of the drug.

When I left the hospital, I was put on 60mg/day and eventually weaned off Prednisone over the course of 2 1/2 months and took my last 5mg dose in mid- February 2008.

It is now 2 months since I have been off Prednisone and as of now, I have only lost 7 lbs, but much of the moon face has gone away and I don't seem as swollen in my chest. My appetite returned to normal the day I stopped taking the drug and my mood swings subsided one week after stopping Prednisone. I still have the buffalo hump, but it stopped hurting and I am now able to sleep through the night. The fluid retention seems to have moved south towards my legs, arms, and lower abdomen. My doctors say that within about 6 months after stopping Prednisone, most of the fluid retention should go away and they recommend walking for 45-60 minutes/day to help with the fluid/weight gain.

Overall, prednisone helped to save my life and put my Crohn's into remission, but is one of the WORST drugs I have ever taken. My heart goes out to anyone who has had to take this drug and trust that you are not alone--and the side effects are real and they are harsh. I am slowly seeing that it takes time for the prednisone to leave your system and my doctors say that every day there is less and less in my body.

Stay positive, stay active & stay Healthy!!

Hi my name is Jessica an I was diagnosed with Chrohn's on 3/4/08. I started with the Entcort for two weeks and that did nothing for all the pain and suffering that I had been going through since November. The put me on Prednisone at 40mg a day. I have been on it for about 3 weeks. After 3 day I noticed the moon face because I had lost so much weight because of being so sick for so long. I still hardly eat and am still losing weight. I can't sleep more then 3 hours at a time unless I take something to strong enough to help me fall asleep and if I sleep for more then 5 hours I will be up for the next 20 before I can even try to lay down. I have OCD which I have never had and cant stop cleaning when I feel up to it (kinda like this side affect). I have been haveing awful leg cramps and walking into stuff all the time. I forget what Im doing or were Im going. BUT the WORST PART is the ACNE... I am an Esthetician and I never had anything like this. I mean I have breakouts during the normal times ect... But this is bad an everyday there are more of them. I use really good stuff on my face to begin with an the things I would use on a client are not the same for treating acne that is caused from this drug so those things are not helping either. Right now my makeup covers it ok, but Im going to be on Prednisone for 3 more months before they will start weening me off and then going on 6-MP drug. I cant go 3 more months if this is going to get worst. PLEASE IS THERE ANYONE WHO KNOWS WHAT TO USE TO CONTROL THIS ACNE ????

I agree, for me this is a horrible drug! This is the 2nd time my allergist prescribed it to me (last time was this past summer and I had severe panic attacks and thought I was losing my mind) this resulted in me returning back to my GP and him putting me back on Paxil (which I had been off of for a year). I was extremely reluctant to use this again but thought i might be able to manage it this time (with the help of Paxil).

My allergist prescribed Prednisone to me 2 weeks ago (5mg 3x's day for 3 days then, 2 2x's day then 1 for 5 days) I made up until the last 3 pills. I had severe brain fog and felt like I was floating through space. I couldn't even remember driving to work and parking my car! Extremely fatigued (I have diabetes (which is under control, but I had to keep checking my bg because I thought my sugar was dropping to low). Now, within the last week of taking the Prednisone I have experienced aching in my kidneys and I think I have a kidney infection.

Can Prednisone do this to you??

I am calling the doctor tomorrow. Today is the first day without Prednisone and I feel like I am totally out of it - really spaced out, dizzy, panicky and a bit nausea.

How long does it take for you to get Prednisone out of your system?

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:
***
Provide 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 !

Remicade did wonders for me, my Crohn's disease went into remission. Still have muscle pain over a year after not taking it. Maybe that is from the Imuran. When I had my infusions I had to have Prednisone before & during because of an allergic reaction.

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!