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Ulcerative colitis symptoms and conditions

Here are side effects posted by other members, that mention ulcerative colitis.
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200 Side Effects posted for ulcerative colitis

November 6th
2009
11:46 AM

Just wanted to let everyone know that you can get Intal Inhaler overseas. It is simple the best asthma med I've ever used and it has been around for 30 years. You can ask you doctor for a prescription. I got the 5 mg. I take 2 puffs 4 times a day, but you can take it up to 8 times a day if you need to.

Did the Singulair, Flovent, Flonase and I developed panic attacks, panic disorder, agoraphobia, depression and ulcerative colitis. Slowly got off of all of them and not only am I almost back to my normal self, I can breathe!

I get my Intal Inhaler at Panther Meds, butotherplaces offer it too. It takes about 3 weeks to get as it's coming from overseas. Please note - Europe's drug process is much more severe than ours. The prescribed Intal more than any other asthma medication. They say the corticosteroids should only be used with extreme, uncontrollable asthma due to all of the side effects.

-- By thecocoapod | Reply | Private Message me

October 26th
2009
5:57 PM

I've been on prednisone for nearly 3 years continuously for Ulcerative Colitis. I've been on 60 mgs for quite a while but I am now down to 4 mgs. Once I went below 10 mgs. I started experiencing severe itching on my entire scalp and then upper back, ears and collar bone. I went to a dermatologist but she can't see any reason for the itching. Has anyone else had this side effect while tapering? It's making me crazy!

-- By catcraze | Reply | Private Message me

September 26th
2009
6:35 PM

I am 44 years old and have been taking singulair for about 4 years. 3 months ago I started experiencing crushing chest pain, tingling in my lower limbs, and felt very stressed out. I went to the ER last Thursday and was checked out for angina - the ER doctor told me I was suffering from chronic severe anxiety. I took Ativan for 4 days and felt better, but now the drigs are gone and I again having constant chest pain. In doing some research I found that anxiety can be caused by imbalance in adrenaline, and so started looking online to see if any of the allergy/asthma meds I am taking (adviar, singulair, allegra) can affect adrenaline. That';s when I found this website. Although i find the testimony compelling, I wish more folks would have poted about how their symptoms improved (or didn't) AFTER discontinuing singulair. Also I've noticed many of the stories are about children not adults; many people are taking more than one med for asthma, and most people's symptoms seem to come on right away whereas I have been taking sinulair for years and only recently have anxiety. I will stop singulair tonight and see what happens, but am wondering if anyone has come across further research that correlates singiulair with anxiety? My job life is really peaceful, I am otherwise happy, work can get hectic but that's true of any job, and I am out of ideas as to why suddenly at age 44, when I eat right and exercise - why get anxiety? Thanks for the posts, I'll try to remember to follow up after I am off Singulair for a few weeks.

-- By icanhike | Reply | (5) replies | Private Message me

August 28th
2009
5:59 PM

Well, I have had 4 infusions for Ulcerative Colitis. I have had several side effects but none that seem to serious....I don't think. Anyway, I keep having problems with my ankles after each infusion. Once they swelled up and a large red spot appeared and I was unable to walk on it for 24 hours then the swelling went down and a week late it happened to the other ankle. The next infusion a blood vessel in my ankle swelled so large I thought it would bust I elevated it and that helped. Then swelling went down after a few hours but the area turned black and blue and took a week to go away. Now I have a cough and sour throat..... so I really don't know. I go for my next infusion the end of Sept. We'll see what happens then.

-- By bumblebee1956 | Reply | Private Message me

August 6th
2009
2:05 PM

I'm 28 years old woman...
I was prescribed Ulcerative Colitis 5 years ago. I have been on prednisone 4 or 5 times since then for periods of three to four months experiencing the typical symptoms and side effects. I had a new flare up and 2 weeks ago my doctor prescribe prednisone again, but this time he told me to take 40 mg a day for 7 days and then stop it, TOTALLY.
He said that it was safe and even better than the old strategy of reducing the dosage slowly over a 2-3 months period, so I accepted.
I've never felt so bad in my life, not even when I was a moody teenager.
These days I have felt so miserable, so depressed...I am an optimistic person, really positive and easygoing but these last three days I have changed completely: anguish, anxiety, panic, alienation, it's like living in someonelse's body,...
Yesterday morning I couldn't go to work, I just sat for breakfast and start crying in front of my boyfriend in a desperate way...I spent two hours crying because I couldn't establish a connection between my body and me, I felt that I was trapped in a strange body...
The funny thing is that my doctor doesn't really acknowledge these sensations, he thinks that the emotional distress is due to sth else and not prednisone!
Apart from that, my bones, muscles and joints hurt terribly...

If you feel depressed, prepare herbal tea. It cleans your body and your sprit. Good options are mint and lemon zest, orange zest and chamomile

-- By katiuskin | Reply | Private Message me

August 3th
2009
12:37 PM

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.

-- By trucker | Reply | (4) replies | Private Message me

June 16th
2009
2:26 AM

22 years old i have had Coltis for 5 years,flair ups pretty much the whole time, i have been on Prednisone a lot this last time has been the WORSE!!! All i can say is i hate it!! i was put in hospital the 4th time steroid thou the iv for 5 days sent home got worse again back to hospital then to try Cyclosporin thou the iv and also the steroid thou the iv. Ten days later they sent me home on prednisone coming off the iv was hard the pain in my legs was unbelievable!!! finally i was sent home on prednisone,coliform anemas,salfak anemas,and salfak granuls,i thought the worst was over but it was far from it... I turned in to a complete loony,crazy women i don't even know myself anymore my poor partner and kids. Having to deal with the pain and everything eles that comes with having a flair up but then also going though the side effects of the prednisone and the coliform was unbearable, i just wanted to die! My flair up was not getting much better and i hated myself as i felt i did not know myself with the mood swings, the crazy flip outs,crying all the time.My partner has been great having to pick me up off the ground and turn the crying reck into someone half normal. I hate the moon face,weight gain, im hungry ALL the time,night sweats,sleepless nights sore teeth,I have come off it now its been 4 days, so now all i need to stop its the coliform then i will be steroid FREE!!!!! i cannot wait!! For my face to go down and to be normal and back to the good old me! I forget what shes like... Coming off the Prednisone has been hard with the leg pain,muscle aches,head aches,mood swings,nausea. Its just hard as no one around me understands what im going though or what it feels like so i just sound like a sookie cry baby or a raving loony. does anyone know how long it takes for moon face to go away??? I wish everyone luck with there battles with Prednisone, its one of the hardest things i have had to deal with. =) your not alone. stay strong and be positive even throu your lowest times.

-- By roxy8_7 | Reply | (2) replies | Private Message me

May 20th
2009
2:51 PM

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.

-- By sbl315 | Reply | (6) replies | Private Message me

May 2th
2009
7:33 PM

First off, let me say that I have been on Depo for 3 years now. I actually like it but I realize that I may be doing something potentially dangerous. I have no idea what else to do though because like many on here, I have atrocious periods and cramps. I am a small petite 95 lb woman, but I would have heavy periods in which I would have to go through a super plus tampon every two hours at some points. I had ulcerative colitis in high school which made me anemic for a while so I decided it wasn't good to be having such a heavy period and losing so much blood. But really it was the cramps that were the worst, they would keep me from work/school. I have had no periods in about two years now which is awesome. I had tried one of the pills back in my past and I seemed to have allergic reactions to it, but the depo seems to work BUT......

There are some things you should know about before you go on this. It DOES decrease sex drive. For the first two years I was on my depo I was still having sex, but for the past year I'm like Meh. I think it partially has to do with the fact that my last relationship was HORRID (I'm paranoid of men now and their intentions), but I also think its the shot contributing to the lack of sex drive. Also, if you are skinny/slender and you get on the shot, its likely that you will remain the same (at least I did), but if you are normal sized or on the heavier side, you will gain weight. I know some women who gained 40 lbs off of it. I also know some who have had worse side effects from it, like, nearly fatal, so I had to think a lot about things before I got on it.

I do have to say the worst side effect for me, and this is embarrassing, but hey, its the internet, right?.... was it made me smell not so good down there. I had never had a problem like that before, I had never even had a yeast infection or anything weird, and from the 4th month or so of being on the shot up to the 10th month (a 6 month time), lets just say it was horrible. I think that also decreased my sex drive because a guy DID say something about it and you can try to explain to them that its your hormones trying to adjust to B.C. but they don't understand. I stuck with the depo because I had a feeling that it would eventually go away, and it did, but good God that was horrible.

The mental side effects didn't really affect me. In fact, I feel that depo made me more sane. It seems that for me, the side effects level out after a year or so, but for the first year it may be hell at times. It's completely possible to be a positive, happy person on depo. I have learned as I have gotten older that happiness is sometimes a choice that isn't easy to make, but is necessary. Usually I find that if I am depressed its because I'm spiritually dead or I just went through a time of emotional trauma, but then again I guess thats situational depression and not clinical depression. I did suffer I guess what you would call an emotional breakdown while I was on depo, I don't think it was the depo, it may have had a little to do with it but it was mostly a bunch of stuff that happened to me a while back. During this breakdown I realized that I either had an impetus to change for the better or I could keep fading and negating myself, and I chose the better option. Sometimes a change in mindset will make all the difference in the world.

-- By mynameremainsamystery | Reply | (1) replies | Private Message me

March 14th
2009
10:08 AM

closing throat, sweats, swollen glands, no menstrual period, leg pain, severe headaches, chest pain. I have been taking 100 mg for over a month. I have ulcerative colitis and I am using colocort enemas and canasa, but would like to know by when will I get the befits of imuran?

-- By iamfire | Reply | Private Message me

March 13th
2009
4:22 PM

I was recently diagnosed with ulcerative colitis and was hospitalized in March 2008 for pancreatitis - a reaction I had to Asacol. A week later I was discharged then went back to the hospital a day later for a severe flare-up. There, they started me on antibiotics and prednisone through an IV. When I left the hospital I started taking 40mg. The initial side affects were severe sweaty palms, racing heartbeat and dizziness. Within 2 weeks I started experiencing insomnia, acne, hair loss, extreme mood swings, depression, anxiety, and was OCD on top of the sweating to where the skin on my palms was starting to peel. It suddenly got out of control fast. I became suicidal - nearly attempted suicide twice. I was paranoid, had severe lack of concentration to the point that I felt cognitively delayed, couldn't do anything on my own, lacked emotion, and felt that I WAS crazy. Luckily my family was very supportive. During the second suicidal attempt they begged me to stay at a psychiatric hospital. I did and was there for about three days. A week later I was finally completely tapered off prednisone. Within 2 weeks I was completely normal and back to myself. My three months of hell was finally over. I tell myself I will never take prednisone ever again but the truth is it might be the only thing down the line that can save my life. I hate this drug and I don't recommend anyone take it unless it's the last option you have.

-- By colitissufferer | Reply | (1) replies | Private Message me

March 10th
2009
6:59 PM

I was diagnosed with Ulcerative Colitis in Aug of 2005 and in remission for 9 months. I came out of remission in May of 2006 and have been on prednisone since then until right now. I would go on high dose of steriods, try a new medication, and try to ween off and get sick right as I went off the steriods, so I'd have to do this rollercoaster all over again. For a year now, I have been on steady, high doses between 60-100mg daily with no break. I tried to go below 20 and got really sick again and have run out of medication to try, so I had my colon removed. Right now, we are trying to ween me off the prednisone (since i dont need it for my disease anymore) but have to go over 3-4 months and very slowly since I've been on it so long to prevent the body from doing all the fun things it does when you stop prednisone cold turkey, like a coma and stuff. I'm SICK of the side effects this drug has had on me! I have had countless sleepless nights, heartburn, night sweats, weight gain (i went from 140 lbs to 215 lbs right now), the moon face to where i can't even recognize myself, red face, weird skin, sensitive teeth, thinning hair, hungry ALL the time, stretch marks, all the weight is in my stomach, the buffalo hump, high blood pressure and high eye pressures etc. These are all the side-effects that have been horrible on this miserable drug. I'm sure there are a lot more I am forgetting, but these are the ones that come to mind. Hopefully they will go away once I am able to finally get off this drug!

-- By atolo22 | Reply | Private Message me

February 24th
2009
8:07 PM

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!

-- By jobugg55 | Reply | (1) replies | Private Message me

February 24th
2009
2:33 AM

I had open heart surgery August 23rd 2006 for a conginital heart defeat (Aortic Valve replaced with mechanical St Jude valve). I wanted a bio valve but Drs insisted I should have the mechanical valve because of my age (45 at the time).

Prior to my heart surgery I was a performer, singer/songwriter/actress/comedianne and I loved what I did. It was my life. Now, after 2+ years post-op and on Warfarin (7.5 mg daily for life) I feel like life has ended and I'm just a walking dead person. The effects I feel daily are as follows...

Dizziness
Severe Headaches
Blurred vision
Memory Loss
Fatigue
Weight Gain
Trouble concentating
Fluttering effect in my head/ears- Hard to explain
Hair loss
Unexplained pains in chest & left side of my body
Unable to sleep well
Tiredness- even when I've done nothing to be tired for
Nausea
Gas & Diarrhea off and on
teeth pain- Like I've drank something very cold
feeling in my head similar to a brain freeze- like you ate ice cream too fast
Night bleeds in my month- wake up with a mouth full of blood daily
What do think, is that enough??

I'm going in tomorrow for a cat scan because the headaches have been so bad they feel I need to be checked for brain tumor and/or internal bleeding. When I tell the Drs I think this is due to Wafarin they pratically laugh in my face as if to say, "Silly silly woman, don't be foolish! We know whats best for you. Remember, we saved your life!" Really? Did you?!

I want nothing more than to get off this rat poison and regain my life, but to do so could mean a stroke or heart attack. I would go under the knife again to have the mechanical valve removed and replaced with a biological valve, but do you think my insurance company (Kieser) would pay for a "silly" thing like that? Right!

Welcome to the greatest country in the world!

I'm going to start a website to help people like us. I want your stories, please send me your info, together we might make a change, what can it hurt to try? Email me ******

B.

-- By beverly4help | Reply | (8) replies | Private Message me

February 3th
2009
3:56 AM

I was diagnosed with Ulcerative Colitis when I was 20. (i'm now 26) I was on 80mg of prednisone for about 2 years. I again about 45 lbs, between water retention and just an increase of appetite and extra calories. I developed moon face and all the other horrible side effects. I was sweaty, bitchy and fat. Needless to say I was miserable. My doc put me on Remicade as an experimental drug, and it seemed to work well. We were able to wean myself off the prednisone and within 6 months the weight came off with the help of some Weight Watchers. 6 years later I'm back on the prednisone, but only 40mg this time, and hopefully for only a couple weeks. It's only been a week and I have insomnia, night sweats, mood swings (my poor boyfriend) rapid heart rate, and weird dizzy/nausea spells in the afternoon. My face seems a little bit fuller, but I think I'm being overly critical since several people have told me I look like I've lost weight in the last week. (it could be due to my flare up making me lose weight) My suggestion is that although this drug is horrible and makes you think you are losing your mind, it does help. Try and breath through the mood swings and remember it's not you. Ask your doctor for a tranquilizer if you have too. (The first time I was on prednisone, my dr. prescribed Xanax because I was so bad. It helped a lot) As for the weight gain, it's hard, and I'm trying to snack on carrot sticks and fruits instead of a whole bag of cookies. One good side effect I have noticed is that my complexion if the clearest it's every been. It's really incredible to be honest. Please know you aren't alone, and although you might not look like how you used to, your loved ones (hopefully) understand that this is a side effect and see you for how you've always been. It sounds sappy but sometimes we need to be reminded of that. I know I do. Good luck to you.

-- By erikalynn916 | Reply | Private Message me

November 12th
2008
9:36 AM

I was diagnosed with ulcerative colitis in 2003, have been treated with Asacol ever since, and was in remission for nearly 5 years. I flared in December of 2007, and had my first experience with prednisone; I was on 40 mg/day for nearly 6 months. I gained 35 pounds, got the moon face, double-chin, tummy fat, muscle aches, extreme mood swings, excruciating headaches, night sweats, and UNCONTROLLABLE hunger. I, too, noticed the sensitive teeth, and now I feel like my enamel is really thin...almost see-through. Anyway, I've been off prednisone for about 5 months. The moon face went away for the most part, but my cheeks still seem a little chubbier than before, and my double-chin is a lot smaller, but still there. I've lost about half the weight, but only after joining weight watchers and working out 6 days a week. I feel like I can't lose any more weight to save my life. Does anyone have any suggestions? I never struggled with weight prior to taking this stupid drug. I'd appreciate any input.

-- By cmfournier17 | Reply | (1) replies | Private Message me

September 30th
2008
1:33 PM

THIS IS A HORRIBLE DANGEROUS DRUG!!!!!
Doctors prescribed this to my mother for 5 years!!!! Because of it's devastating side effects it is FDA approved for short term 4-12 weeks and only as a last resort. And NEVER for Parkinson's patients. It is unclear if Reglan caused the Parkinson's like symptoms or if she had it prior. Either way the doctor was so wrong to prescribe this medication to her. She is completely disabled can't walk or even get out of a chair had a auto accident and falls one time a metal frame fell on her head causing a hospital visit another time she fell into cactus! I was horrified to learn that no one caught this error. Not one doctor or the drug store told my parents REGLAN could cause her to end up using a walker and unable to function even the simplest daily tasks and that these symptoms could be permanent.

-- By utoh | Reply | (4) replies | Private Message me

September 25th
2008
9:07 PM

I was prescribed the 4mg methylprednisolone pack along with 50 mg tramadol for acute tendinitis in my wrist. I took the first 3 days of the prednisone and only 2 doses of the tramadol over the three days. For a total of 60 mg of prednisone.

The first day I had hot flashes and insomnia but attributed it to the tramadol because I had never taken it before and had taken the prednisone several years ago for poison ivy with no adverse reactions. I didn't take the tramadol the second night and then took it again last night along with my daily dose of prednisone. I had extreme difficulty falling asleep, heart burn, hot flashes; and tossed and turned all night trying to fall asleep. At around 2am, I began to have difficulty breathing, tightening in my chest, confusion, and racing thoughts. It felt as though my throat was closing up on me. My anxiety progressed to the point that I was pacing back and forth. I woke my husband up and told him to prepare to take me to the ER. After calling my insurance's 24 hour help line, it was recommended that I go to the ER. I had an x-ray, blood work, urine drug screen, and echocardiogram. Luckily, everything was negative. The ER doctor told me that I likely had a reaction to the prednisone and commented that some people will experience these symptoms when taking it. He stated that he had a similar reaction when he took it and it felt like he was climbing the walls, which is an accurate description of my experience that night. He recommended that I either stop taking it altogether or call my primary care provider and cut it down. He prescribed me xanax and administered some to me at the ER which greatly helped. The next day I stopped taking the pred but am still having dizziness, chest tightness, hot flashes, and mental dullness. I have decided to never take this medication again. Fortunately, I don't have any of the physical sx that some have experienced, and my heart goes out to you. I think the mental symptoms were traumatic enough for me and can't imagine having both as I would be a basket case. I have mood swings, some melancholia, and am very fatigued.

I think it is imperative to research any medication that is prescribed to you before you take it. Many providers will say that side effects are rare, but my experience is that side effects are more common than rare. My prayers go out to those of you who are going through what I am going through. I hope that it clears our systems quickly because this is no way to live. I'd rather put up with the pain of tendinitis or carpel tunnel than to have these symptoms.

-- By elise1966 | Reply | (5) replies | Private Message me

September 9th
2008
5:06 PM

I was diagnosed with walking pneumonia and my doctor prescribed avelox. 2 days into taking the med I developed cramps in the lower bowel and diarrhea and I was always tired no energy. I figured that the avelox killed the bacteria in my gut and started taking Acidophiles pills. 7 days into the meds I found this page and immediately stopped the avelox and called my doctor. He put me on biaxin and put a note in my record. NO AVELOX! Well it in now going on 4 week later and I still have diarrhea (explosive) and my doctor is baffled. He is sending me to my GI doctor now. I have Ulcerative Colitis. I am worried that avelox may have caused a flare up.

-- By acetek | Reply | Private Message me

August 19th
2008
10:58 PM

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...

-- By jmmm70 | Reply | (9) replies | Private Message me

August 19th
2008
10:10 PM

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!

-- By jeremy2 | Reply | (1) replies | Private Message me

August 9th
2008
9:23 AM

Remicade has totally changed my life. I could barely walk due to ankylosing spondylitis and I also suffered from severe ulcerative colitis. I still have pain, but nothing like it was 10 years ago. The ulcerative colitis has been in remission since my first infusion. If I die from taking Remicade tomorrow, I will be die happy. I was ready to die when I started the infusions!

-- By livingdead | Reply | Private Message me

August 4th
2008
2:38 PM

hi all. thanks for writing your comments here. it has helped me today, another HORRIBLE day of prednisone hell. i have been seriously ill for 8 months been told ever other week I'm likely going to die from lung disease (i'm 35) and after a painful lung biopsy have been told my lung problems are almost all reversible... after a year on high dose prednisone. i was on 40mg a day for a month a while back and was so out of control from rage and crying and insomnia and panic/suicidality, ravenous appetite, that they lowered me to 30. then after biopsy they said i should be on 100mg to cure me, we settled at 60mg. it's been 24 days. The moon face started about one week in. i've gained 8 lbs. i am an emotional wreck. i have at least one rage filled attack per day where i am screaming and want to kill somebody or destroy something. some days i am so filled with hopelessness and worry i just want to die. my body changes (after just losing 30 lbs and being a work out fanatic my shortness of breath makes it impossible to walk up 2 flights of stairs without resting) face changes, acne, excess body hair (oh my god please make it stop i'm like a chia pet and i'm so afraid it is going to get worse) double chin, puffy eyes and cheeks, absolutely uncontrollable emotions and mood swings, inability to be logical or reasonable. i don't want to leave the house, i'm panicked and scared all the time. i never sleep. ambian gives me minimal relief (just started taking it) i feel like i'm losing everything, except my lung functioning is returning and i'm not going to die from this illness (they assure me THIS week) i understand light at the end of the tunnel, but living like this is unbearable most days, almost impossible the rest of the time. am i alone with the severity of this? or are all the others like me too busy hiding the sharps and crying in a corner to write on this board? thanks for listening :)

figures, forgot to mention what HELPS. no eating after 8 (7pm is better) no salt, no sugar, exercise, even just a walk every day, anything physical, i walk like a grandma on the treadmill but i still do it, sometimes it is the only thing that stops my crying. no alcohol, support and understanding from loved ones, it's not you, its the drugs. good luck.
figures, forgot to mention what HELPS. no eating after 8 (7pm is better) no salt, no sugar, exercise, even just a walk every day, anything physical, i walk like a grandma on the treadmill but i still do it, sometimes it is the only thing that stops my crying. no alcohol, support and understanding from loved ones, it's not you, its the drugs. good luck.

-- By sobbinghulk | Reply | (8) replies | Private Message me

July 24th
2008
12:13 AM

I have been on prednisone for 5 1/2 months now, I was hospitalized starting in February until like the 25th of March for a bad exacerbation(sp) of my ulcerative colitis. I have taken prednisone for 9 1/2 months out of the last 17 months. I have experienced everything from growing facial hair I don't want to loosing what hair I do in a short period of time. Most of my hair loss started after I weaned off the prednisone about one week ago, or lets say it got much worse. I also while on prednisone got have got to experience the lovely side effect of pysicosis(sp) and am on meds to couter react what it has did to me. This is a evil and horrible drug, I hate it with a passion for all the harm it has did to me. I now have joint pain, restless sleepless nights, night sweats, tremors, not to mention the rapid weight gain. And to top all this off I am still not in remission, so this drug was used all in vain. Please be careful using this awful drug and if you have to use it, only use it for a few weeks at the time and not long term...the side effects can be horrendous and sometimes like in my case permanent to some extent. I do wonder about the hair loss, it has been worse this time than ever...I hope it stops soon.

-- By msharig | Reply | Private Message me

July 22th
2008
1:21 PM

Hi all. I would just like to agree that PredniSone sucks but it is the best out there for these diseases especially the auto-immune diseases. Drug companies do not make any money on prednisone because it is generic and there is no patent. I know I picked up 98 10mg prednisones yesterday for $5.00. Believe me when there is a better steroid that works as well and has less side effects it will be available to us all. It will cost tons but it will be sold. Researchers have been working for so many years trying to find an alternative, some have been found but do not work well enough. As bad as the prednisone makes us feel it does work on the diseases. You always have the choice to say no - that is why we should all have a health care power of attorney - just remember that when you decide not to take the prednisone you are agreeing that the disease may worsen and may be life threatening. I hate to sound so morbid but patients must be informed. When you are at the physician ask about the side effects, ask if they can give you something to counteract any mood swings, ask what lotion is best for the itchy skin (AmLactin works well for me and is over the counter). Also, my physician advised me yesterday that the side effects are worse on women due to our precarious hormones. I have told my husband to just stay out of the way and don't piss me off because I am not sure how this next 7-8 weeks is going to fare for him. I am 4ft 10in 110lbs and he is 6ft 1in 200lbs and believe me he is scared for his life. I am using prednisone for my ulcerative colitis so now that I am feeling better physicially I can return to exercise and that has definitely helped. So has turning up the music really loud and dancing and singing poorly. Yelling at the tv helps me whether it be politicians, soap operas or idiots on game shows who get the wrong answers. I also have been keeping a journal of all the rage I have and what kinds of things I could do to people who keep getting in my way at the store, on the road, in line at the pharmacy - I guess I need to put that in a safe place so it can't be used for evidence :}

-- By maryrn | Reply | (7) replies | Private Message me


 

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