April 8th
2009
9:39 AM
I was on Humira about 16 months ago and had no side effects at all. I was taken off the drug when I had a resection done last summer (Crohns). My symptoms came back this past January and they put me back on the Humira pen. I got really bad local site reactions: bad bruising, lumps, and eventually scabbing. I went through 3 rounds of the drug this time before the doctors took me off of it. I had my first Remicade infusion one month ago and am keeping my fingers crossed that I would have any side effects.
-- By bostoncrohnie | Reply | Private Message me
November 18th
2008
7:20 PM
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?
-- By capthugh | Reply | (4) replies | Private Message me
October 15th
2008
10:52 AM
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.
-- By navycross | Reply | (2) replies | Private Message me
October 10th
2008
12:58 AM
I have Autoimmune Hemolytic Anemia (AIHA), was diagnosed in Feb. 2008. Have been ill for several years and finally it came to a head in Feb. I had a blood transfusion and then in the hospital 6 days later with a hgb of 4.0. I was so toxic and my blood so screwed up I nearly died. I was given another transfusion then (total of 5 pints of packed red blood cells) and started on Prednisone. For 3 days given liquid Pred injections, starting at 1000mg, tapering down to 250mg., then on the pill form at 100mg. Sweat poured off of me dosing down. I was off work for 2 months. I am still tapering but am now at 1mg. DR. added another drug, Danazol, after getting to about 10mg because my blood started going crazy again. My side affects with Prednisone have been, Euphoria, no depression, LOTS of hyper brain activity, thoughts running a 100 miles an hour but body at slow speed.Visual problems and a feeling of being highly drugged. 2 to 3 hours of sleep each night, compulsive behaviors and a lot of pacing back and forth. Couldn't hold my concentration because my mind wandered so much. Extreme Tremors in my back, hands and head. Wanted to talk constantly, if no one was around I talked to my Chihuahua or the TV. My cheeks puffed up and became hard and had a fat pocket puffed up on left side of my neck. My dog thought I was crazy, she was tired of the lights being on at 3 or 4 in the morning. Legs looked skinny but didn't gain weight until I got to about 60mg. Gained 25 lbs total. Tapering caused bad spasms in my calves, feet and hands. Thigh muscles would get extremely weak each time I went down a dose. At 50mg I started getting sleepy and could hardly stay awake. Went back to work at 35mg and couldn't remember how to sign on to my computer. Some memory problems since I was in the hospital, couldn't remember how to spell words I knew as a young girl. Started having hip pain about 3 months into the Pred, that hasn't stopped. At 10mg feet, knees, shoulders hurt deep in the sockets, muscles below my neck knot up, may take a while to totally get off this. Read on a couple of blogs where people cut a 1mg tab into 4 pieces to taper off the Pred. because of side effects. Had thrush in the beginning and break outs of shingles. I hope to God I never have to get back on this drug again, it is so HARD on the body but it did do what it was given for, to repress my immune systems. My next step is Spleen surgery, hope this is a cure for me, am sick and tired of being sick and tired. Wouldn't advise anyone to take Pred unless it's a life or death situation. It's prescribed too liberally and people have multiple problems, worse than I have experienced. I've probably forgotten some things, but there's enough I've mentioned to give you an Idea it's not good, but if Pred is all you have then you do what you gotta do!! My puffy cheeks have went down though, now my hair has become curly but at least I have hair and my chihuahua stills loves me!!!
-- By linn | Reply | (4) replies | Private Message me
April 4th
2008
9:13 PM
Right after I started taking Lisinopri in May 2007, I had a major flare-up of my Psoriasis. I have had Psoriasis for over 35 years and it was only in certain areas, now it has completely spread over my entire body. I also have constant ringing in my ears, never thinking it could be related to the Lisinopril. Sometimes it works to lower my blood pressure and other times it seems not to help. Occasionally I experience dizziness. These are all symtoms I never had before, I am not overweight and do not smoke. I had been healthy except for borderline hypertension prior to taking Lisinopril. I am not taking any other medications. My dermatologist is pressuring me to start Raptiva and I have agreed, not realizing that maybe just stopping the Lisinopril might ease the symptoms of my psoriasis. I just started researching Lisinopril in the last few days when someone I work with casually mentioned that there may be a link between Lisinopril and Psoriasis flare-ups.
-- By edigirol | Reply | (3) replies | Private Message me
March 7th
2008
11:46 AM
Been on Prednisone for 3 years now for ulcerative colitis. At first tolerated the drug quite well. But after a few months started to gain weight, acne. After 3 years of yo-yoing between large and low doses, each increase in dose made me feel worse. I am now at a state of osteopenia and of extreme tiredness and brain fog. I see 80yo with more energy than I. I cant walk up 10 sets of stairs without feeling tired out. I need to sleep 3-5 hours a day just in order to function. As mentioned before brain fog is amazingly bad. I'm a scientific researcher which can no longer work.
Prednisone has introduced to me what panic attacks are, mood swings, joint pain and swelling, extreme muscle fatigue and wasting, blurry vision, in habitual eating habits, depression.
This drug has ruined my life. I would have preferred having surgery to remove the colon and going to the toilet 10 times a day rather than not living as brain fog and tiredness that makes my life a dream-state nightmare.
-- By geemgumgomgum | Reply | (3) replies | Private Message me
February 4th
2008
8:35 PM
I have been taking Remicade for years. At first it was getting the job done. I started having severe pain that seemed to migrate to different places in my body. Sometimes the bottom of my feet would get so tender I could barely walk. My finger would bend while sleeping and I could not straighten it for days and it would hurt real bad. Knees and ankles would do the same things and then move onto other parts of my body. I thought it was more of a tendon problem, but the pain could also be in any random spots on my body, like shins or maybe a random place on my back. My wrists seem to be a favorite place too. The pain can set in fast and sometimes leave fast. Prednisone is the only thing that seems to help these symptoms. I have been taking 5mg a day for years and when I am having problems that is not enough. I went to a Rheumatologist and he says it is not the Remicade but another antimmune problem. My family doctor thinks it is a side affect of the Remicade and I tend to agree with him. I am going to have my damaged pouch removed in hopes of getting off all medications. I have been living with a colostomy bag for the past three years and it is the least of my problems. Before that I had all my large intestines removed and a pouch which worked well for approx 15 years. I am one of the early people to receive that kind of surgery. I can only pray for all of you that are suffering and lend hopeful advise to your journey.
-- By jbill | Reply | (4) replies | Private Message me
March 7th
2007
4:29 PM
I began a new dose of Prednisone yesterday. I was diagnosed w/ RA about 3 years ago. I have been on Embrel (didn't work) and am now on Humira and Methotrexate. I have been having extreme difficulty the last month and finally returned to my doctor for relief. (I have been on Prednisone before and had only the headaches) I was prescribed a higher dose this time (60 mgs 2 x daily) and have been battling with a racing heart that beats so hard it hurts. I have now taken my second dose and cannot walk more than 10 feet without feeling like I am having a heart attack! While it is helping the RA pain in my joints, I am so scared to move and so uncomfortable when I do, I am not sure what is better. The disease or the cure? Has anyone else battled with the racing heart? Oh and I also have high blood pressure and the Prednisone is making it higher even with my meds!
My only other instance with this effect was from a steroid injection about a month ago. That episode placed me in the ER receiving medication to lower my heart rate.
July 16th
2005
3:22 PM
I was diagnosed with rhuematoid Arthritis in 1986 so I've had it for 19 years, I was 27 years old at that time and I am currently taking methotrexate & Humira injections, but occasionaly I have a flare up and need to be on prednisone, But this time after coming off of it the side effects were horrible, My right leg feels so stiff and the knee is all swollen and both thighs hurt just to touch them, also my arms feel like I just worked out for the first time in my life, I got sores in my mouth and once they were gone the top of my mouth feels like I burnt it. It's smooth and hurts to brush my teeth, I don't know what is going on, I have never had symptoms like this before and In 19 years I have been on and off prednisone a dozen times but have never been in this much pain after coming off of it! Has anyone else had any of these symptoms before???? I am also very fatiged I feel like I have fibroymialga.
-- By june321 | Reply | Private Message me
April 28th
2005
2:27 PM
I've been on Prednisone for 5 months now for pyoderma gangrenosum (big ugly skin ulcers on the lower calf) and it has been the only effective treatment to stem the inflammation. I also underwent a steroid pulse therapy for 3 days taking 20x the typical daily, oral dose. Hospitalization was reguired for monitoring purposes. The etiology of PG is unknown and there appears to be a casual relationship with Crohn's. Fortunately I don't have Crohn's. The many side effects that have been mentioned I have and the mood swings and the lack of sleep are the most dreaded. I'm also on Methyltrexate and Humira in hope of getting off prednisone. Yes, like many of you, there's a love/hate relationship with this drug.
-- By jtappel | Reply | Private Message me
PredniSONE (5) Remicade (2) Humira Pen (2) Lisinopril (1) Imuran (1)
August 17th
2009
4:28 PM
I have no idea if these are side effects from Remicade or not- because doctors always dismiss it as "probably just you". Definitely HEADACHES. I would occasionally get headaches before, but since being on Remicade the past year, I get really bad headaches. Neck/scapula pain/strain. I have woken up with immobile neck 3 times now in past 2 months. It's getting ridiculous. The doctors just say I need PT or to stretch. But I really wonder what's up and why I've never had that in my life until now. Also flushing with inital infusion, but that really is no biggie. I definitely feel STUPID. I've heard of "chemo brain"- does the same thing happen with Remicade?
-- By scaredycat | Reply | Private Message meI am 31 and taking this for inflammatory condition NOS. I have an autoimmune/inflammatory eye condition NOS that left me with significant Retinopathy. I did Prednisone, Methotrexate, Humira, Cyclosporine, Tacrolimus, Cellcept all for a few years- and nothing helped except steroids. Which obviously you shouldn't take long-term. Plus I HATE them, they make me fat, hairy and psycho! So Remicade has been a god-send in some ways. But I am a mother of 2 and love my husband, and worry that I may not go blind but will die young from side effects of this medicine. But why should I worry? Every health care professional says there are "NO" side effects. What's the deal?