Infusion symptoms and conditions

I'm a 56 year old male. I'm taking pred as a trial therapy for CIDP, which can be described as MS "lite". The treatment has been three days of one gram per day methylprednisolone infusion, followed, for the rest of the month, by 20 mg prednisone a day. Then another three days of infusions, etc. It's called "pulse treatment." Side effects have been a bit of insomnia, mainly during the three-day period of infusions, feeling a little hyper, slightly hoarse voice, huge appetite. I seem to be able to control these rather well, and haven't gained weight, so far. I'm told I look a little flushed, but don't have a Barry Bonds face, noy yet anyway. The two side effects that have been problematic: Flatulence. Ever read Confederacy of Dunces? I feel like Ignatius O'Reilly. The most problematic has been the urge to pee, which is most intense a couple of days after the infusions are complete. It's really intense for two or three days, then subsides a bit, but still makes me get up in the middle of the night, something that I've only rarely experienced before. Tests for urinary tract infection are negative. Will do this treatment for a few more months and then get spinal tap and EMG test to see if there's an improvement. Haven't noticed any so far, but that's expected.

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.

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?
I 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?

im just a kid. ive had 4 remicade infusions for chrones disease. and i have a terrible headache on the lower middle section of the left side of my head that spread to my left eyeball. has anyone else had these problems with remicade? or are my sleeping habits giving me these.

My 14 yo son has UC, he has had 2 infusions and now the MD wants to try to go without it and stay on Lialda only. Which sounds great, but for the past 2 days he has had a severe headache and fever, wanted to know if this is related or not its been 7 weeks since last infusion.

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 have been on remicade for 4 years. I never had any allergies until 6 months ago. I don"t have reaction to remicade it self but is it possible that remicade is creating all of this reactions to other drugs. First it was benadryl. I was given benadryl prior to remicade until 6 months ago after I got benadryl developed tremors, tachycardia and feeling very dizzy. All this prior to remicade infusion. I was treated with solucortef and IV fluids and it went away. 2months later I restarted taking paxil. 5 days into it, same symptoms but more severe and I ended in hospital. Lasted for about 5 hours. 2 months after that I took valtrex that I take as needed. Same thing. K dur 10 meq caused severe diarrhea. I am to the point that I am afraid to take any medication in fear of reaction. Could all this be caused by remicade. If I stop will it go away. Any suggestions?

Has anyone experienced multiple pulmonary emboli (blood clots in the lungs)?

I have MS and FINALLY tried the Solu-Medrol. 3 days infusion and then once a month for the next 5 months. I have been on it for 3 months. The pain in my joints goes away almost completely, though it comes back sooner now than at first. It feels great not to hurt. The metallic taste and bloating is worth it. The first several years after being diagnosed, I would not take it. Now I can hardly wait for my next infusion. I also take Betaseron injections every other day.

My 80 year old mom is going through Chemo for Bladder Cancer. She is also diabetic. Bacteria was found in her urine so the doctor gave her 4 tablets of Levaquin. Saturday night of Labor day weekend mom took the first pill. Sunday she woke up almost BLIND! She panicked and, thinking it was her diabetes causing the problem, took her blood sugar numbers. (She was so scared that she can't recall what the numbers were, just that they were 250+). She started taking her fast acting insulin. She couldn't get the blood sugar numbers to come down after numerous injections. She called me so confused and not knowing what to do. Thank God I wasn't gone that weekend. I rushed 18 miles into town. I calmed her down. We just kept watching the numbers and she kept taking her injections. About 6 hours later the numbers were down to normal for her. We narrowed the cause down to either the Levaquin or the infusion of platletts she had on Friday. We called the pharmacist and he said that Levaquin could cause blurriness of vision. She didn't take any more Levaquin.
It had been 10 days since she took that one pill and her eye sight is still messed up. When she tries to read the newspaper the letters jump around. She has a hard time reading the dosage numbers on her syringes now. She is so scared that her eyes won't get better and she will have to be dependent on someone.

I had my 4th infusion about 10 days ago and had a really bad reaction. I had just started the infusion when I felt uncomfortable cramping in my upper left arm then the pressure in my chest started. The nursing staff noticed right away and called the doctor who ordered them to stop the infusion. Just as they gave me a shot of benadryl to help control the bad reaction, I started to shake and pass out. Since that time, I've had terrible headaches and a very painful stiff neck. So painful that I haven't been able to sleep. It has been 10 days and I'm still experiencing the stiff painful neck and terrible headaches. I won't ever take this again. I'd rather suffer with the affects of RA than with these horrible headaches.

Hi, I am a 57 year old female who was just recently put on Fosamax to counteract the bone loss caused by Femera that I am taking to keep my breast cancer from coming back. The first two weeks I felt okay albeit I did have stomach ache for two days and loose bowels. Then the bone pain began and I mean pain, not light, not moderate as the labels say, and it was especially severe at night. I found myself also feeling dizzy, depressed, no energy, kinda weird. I couldn't have relations with my husband because my hips and pelvis were so painful, also my neck, lower back and legs. Not fun. I took myself off it....Bone pain subsiding..also gastric upsets were getting worse. I tend toward gastritis and have IBS so this drug did not agree with me. I hate it! Will not go on any of these again, as I have also had lots of jaw problems in the past, and dental problems and DO NOT WANT that horrible jaw thing to happen. Yike... Love Pam

Immediately following the infusion (I was still in the chair), which was administered over 3 hours, my blood pressure dropped to 42/27, with the predictable result - loss of consciousness. This was preceded by extreme joint stiffness (fingers of both hands and both knee joints, elbows, everything). I was put on oxygen and administered IV bolus of fluid. On Day 2 the same thing happened, but it took longer to recover. Infusion 3 was canceled.

I had my first infusion at home 1gram IV at 11am. It is now 9pm and I am having hallucinations of people that are not really there. I'm scared, my heart is racing and I feel like I may faint. I'm thirsty. what should I do, no one to call, if anyone is out there that can help me, please email.

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

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!

Centocor, the maker of Remicade, aggressively pushed physicians to set up infusion clinics, write for the drug and promised huge profits.Most of these infusion suites are run by nurses. The drug dose is calculated by a nurse and mixed into the iv bag by a nurse NOT A PHARMACIST. The drug, which can put patients at risk for serious infections and tuberculosis is not even mixed in a sterile IV hood !!! It is mixed out in the open air and exposed to contamination. In the meantime,Centocor downplayed the severity of the side effects. This drug actually caused LUPUS in a patient who subsequently won $19,000,000 in a lawsuit. The drug can greatly increase the risk of lymphomas and blood disorders with fatal outcomes. But the literature does not adequately educate patients and physicians on how to properly monitor the drug! The drug can cause memory problems, visual changes, and increased sed rate and increased c-reactiv protein.

I've been taking fosomax for 16 months. In the last 10 months I have developed a hoarse, cracking voice that has become progressively worse. An evaluation finds a blister on one vocal cord. I don't know whether it is related to fosomax or not -- but am wondering if anyone else has a similar story.

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.

After 2 years on Remicade I slowly developed SEVERE JOINT PAIN all over my body, including my jaw. It's so bad I can't walk and do simple tasks. I have not been on any other meds.

The only thing that cures the pain and allows me to go back to work is another infusion. It's like CRACK.

Now the DR. has scheduled my infusions closer together and the pain just comes on sooner, like the medicine doesn't last as long.

I want to stop treatment in the worst way but I have been reading that the side effects do not go away - even after treatment has stopped.

Has anybody here discontinued their infusions???? Please help!

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

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

Now a new side effect, I have posted other side effects that were enough to get off the remicade. I went in and had another surgery because the side effects of this drug was killing me.{see other effects I posted under Jbill} So now the Doctors are looking into Brain damage. I am going to have a MRI done to see if this is a reality, I feel as though I have lost my wits. this is not something that I came up with, it is starting to show up in others and is talked about among the doctors that treat us. I used remicade for approx 4 years and feel like it is a dangerous drug. It can work pretty good but would not take it on a regular basis. I will not take it again.

indapamide is causing severe hyponatremia leading to severe hyponatremic symptoms with hypokalemia requiring ICU admission with 3 % NS infusion for coorction. more than 300 patients developed this complication over last 2 yrs.
presentation of such patients is like they develop constipation ,altered sensorium with lethargy to acute confusion.
elderly people are affected the most.
Need to cautioned in elderly.

I'm on my third infusion. Up till recently? It was a wonder drug. I got all my energy back, no more random joint pain and everything was going great. Then my third infusion happened. And I get jimmy arm. It's like jimmy leg, where you can't stop it from bouncing. Only worse. It's like my arm just won't rest. The next night? Both arms. The night after? Chest pains, racing heart, breathing shortness, all kicked off at 3AM with a lack of sleep. This is all very new to me and I'm waiting to hear from my Rheumatologist if I should go to the hospital or not.