Side affects from Remicade Treatments

by Sally
(Milton NH)

I was just diagnosed with Crohns in the beginning of August of 2009. After a 15 day stay in the hospital, I went home with 7 meds for Crohns. I had a remicade treament in the hospital, with no side effects, well least I think none. I had my next remicade treatment Sept 1st, and my 3rd treatment Sept 30th.

It was the 3rd treament of Remicade that really went through my body, from head to toe that afternoon. By 9pm that night, it felt that there were a millon people in my body, tearing it apart. No one could even touch my skin. It was found out that any arthritis that I had in my body, (which is everywhere) was made 10 times more painful as a result of one of the side effects of Remicade. I also had a total knee replacement in March of this year, along with surgeries for a rotator cuff repair and a bicep muscle that had been ripped. Both of these surgeries, were severely affected by the 3rd treatmemt of Remicade, with the artritis flare up. Now they're more painful then they were before the surgeries. So we wait to see if I need more surgeries on my knee and shoulder.(cute)

So now no more Remicade treatments for me. At the end of November, I will start the Humira treatment.

I was at a Rumatologist yesterday, to see if I had Rumitoid (sp) Arthritis. Which I don't. which is the only good news I have had medically this whole year.

I have some questions, as far as other side affects that have been happening to me. They started right after the 2nd Remicade treatment. But according to info that i've read, which according to things that i've read are very rare, but would explain a lot.

I have lost mobility and funtion with my pinky, ring and middle fingers on both hands . They're always and yes I mean 24/7 tingly, with severe weakness. Along with numbness in my right foot, and my ankle, along with tingly and severe pain on the front of my right leg from the knee down. My leg feels heavy, and I can not flex my ankle as I could before.

With both of my hands and leg,foot, the more I attempt to use them, the worse they hurt and the heavier they feel. Items will drop out of my right hand. It gets to the point that I can just about lift my right foot. Which really isn't to good when I am driving. I can use my hands for driving with out a problem but they do start to hurt a lot more, andI can't start the car with my right hand, I have to reach over with my left hand.

I do have an appt with a spine/neck Dr a week from today to see if any of this is from pinched nerves. If he says no, then it is onto a Rumatologist.

I really would like some help, to see if any of this has happened to anyone during their Remicade treatments.

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remicade

by Tracy
(San Antonio Texas)

needs info on Remicade. Who is on it and are there any bad side effects?

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remicade question

I may be changing my medication from Sulsalazine to Remicade what do you think about that. Is Remicade a good choice to put my chrohn's in remission?

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6mp from Sulfa
by: Anonymous

Thank you Tod for your comments. I will be starting 6 mp meds soon and I am excited. I hope to get my life back soon on these new meds. Sincerely Jawanna
Remicade
by: Tod

I have had CD for over 40 years and it wasn't until 3 years ago that i started on Remicade and 6mp. All i can say is that i wish remicade was an option years before because it is the best thing that has ever happened to me, ever!

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remicade for fissures

does remicade deal with fissures?

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surgery verse remicade

My daughter is 15 and presently at childrens hospital and they r wanting her on remicade and my daughter is wanting to do surgery they explain the surgery as incisions put in her small intestine and that gives it room to expand

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Remicade and Flare ups?

by Rick
(Canada)

While on Remicade, can you still have flare ups? I have been on Remicade for abour 7 months. Everything seemed to be going great but the last few days, I have been having some troubles with many trips to the washroom again. Feeling like I have to go but can't or only a small movement? Always feeling like I have to go. I am on Remicade and wondering if these symptoms should still be happening?

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remicade & tatoos

My son is currently getting Remicade treatments and has been wanting to get a tatoo. Anyone have any insight on this? I know with chemotherapy for cancer, they ususally won't do it.
Also, the effects on your body with alcohol and Remicade.

Thanks for any input

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tattoos
by: preggoWcrohns

Hi I've had crohns since I was 3 (am now 23) my sister paid for us to get a tattoo while I was on double doses of remicade every 6 weeks. Didn't have a problem at all, and I usually ALWAYS have problems, lol. It's strange but getting a tattoo gave me a sense of spirit while I was otherwise in a burnt out place. Hope this helped, my GI hadn't raised any concerns either.
tattoos
by: BillieP

I have had crohns since 2003 and had gotten a tattoo after being diagnosed. I started remicade and it worked beautifully. Got a tattoo and ended up in the hospital with a wicked flare-up. I don't regeret the tattoo but I did spend 3 days in the hosptal.
tattoos
by: BillieP

I have had crohns since 2003 and had gotten a tattoo after being diagnosed. I started remicade and it worked beautifully. Got a tattoo and ended up in the hospital with a wicked flare-up. I don't regeret the tattoo but I did spend 3 days in the hosptal.
I would wait
by: Vanessa

HMm that is a good question. I took Remocade for more than 1 year and a half and I know that with this medication, you have to be very careful with of infections. So if I was him, I would wait or ask my I specialist.
Good luck :)

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Remicade, the miracle drug, has come to an end.

by Matthew Gross
(Knoxville, Tn)

I have currently been without Remicade since Nov.2010. I have health insurance through work but it would only cover $1500/ year. Yeah, so no thanks; that would mean about $17,000-$18,000/ year out of pocket. By the way, I work in a kitchen as a grill cook. I don't know what to do, and i'm afraid that i'm going to flare up, it is just a matter of when. I feel like i am in the middle of the ocean in a small boat without oars, and the seas are steadily rising. If anyone knows of any foundation, a new way of providing insurance, or known miracles, please contact me. I am not looking for a handout, just a decent chance.

Matthew Gross
email: grossed83 @ gmail.com

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Options...
by: Peter Bray

You look for what options where you can find them...put your son's malady into the search engine preceded by " alternative meds for" and see what there is on the planet---you become a 23 year lnog advocate for your child, you become a lay doctor...you learn what you can about biology and nutrition and every researcher on the planet...my wie's daughter had Fanconi's aplastic anemia as a toddler, was NOT suposed to make it---my wife became her advocate and gave her 35 more years until an aggressive cancer on top of the anemia and pseudomonas did her in at age 40--we have NOT been on the planet long enough to have all the answers...ewe have to push the envelope daily...doctors are NOT the only ones with brains and determination...join support groups and become a lay researcher for your son's needs...share with others what you know and have learned..there are others in your trail, knowing less than you---good luck, stay in touch, the world is round for a reason, what goes around, comes around...Peter Bray, Benicia, CA
loosing Insurance for Remacade
by: Anonymous

My son is in the same boat . He has lost his medicare for his remacede treatment and now we our at a loss .. Trying to find insurance the Childrens hospital will accept . Dont know very confusing .. His treatment was the 24 of June . H e did not recive it . he hasnt has a flare up for five yrs and he and nemocycstics Phemonia and the remacde did heal the 12 holes in his lungs so may not be good for some but my son has survived because of it .. What are we to do now in this state of arizona . Where do we turn?
Useless Remicade...
by: Peter Bray

Sorry...my daughter was on Remicade for 5 useless years...preceded by 18 years of other useless meds...she now has a temporary looped ileostomy following recto-vaginal fistula surgery and is on probiotics and aloe vera...see www.crohns.org and www.johnes.org and www.paratuberculosis.net and draw your own conclusions---also see the IBD videos on www.YouTube.com, join every support group on the planet and see what other people do to cope...e-mail me at PetrBray@AOL.com and I'll send you 9 columns I've written on the subject---

Western Pharmaceutical houses are NOT after a cure, they're after symptom suppression and drug sales while the pathogens run amuck---Peter Bray,Benicia, CA

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crohns disease and baby on remicade

by Tiffany
(vancouver)

I have crohns disease, ive been on remicade for two years id like to have a baby soon, is it ok to have a baby while on remicade or do i stop taking it??

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conceive on remicade

by Jessica Sanchez
(Greeley CO)

When on remicade is it harder to become pregnant?

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Remicade and severe joint pain ??????

by Rick
(Canada)

I have been on Remicade for about 6 months. It has been working very well. After my last treatment, I have been suffering from severe joint pain. Every joint in my body hurts. I couldn't move. The pain was from head to foot. I was hospitalized for a day and given a shot for pain. Many tests were done and they showed nothing. A couple days later and I am still having some pain. Dr says its a side effect of the Remicade? Has anyone else had this pain from the Remicade??? How long will the pain last???

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Correction to my previous post
by: Laura

Correction to my Sept. 7th post:

I recieve Benadryl and hydrocortizone, not methotrexate (oops) as pre-meds before my infusions.
I had the severe joint pain too
by: Anonymous

I experienced severe joint pain roughly a week after my first infusion. The pains were excruciating and moved around to different joints on different days. Many times I couldn't even walk because my knees, ankles or hips hurt so badly. I couldn't handle this pain so I never went in for a second infusion. The joint pain slowly dissipated over 6-8 weeks once the drug left my system. I opted for ostomy surgery instead (I have UC) and am extremely happy with the results. No more meds or pain.
Do a websearch...
by: Peter Bray

Do a websearch for "arthritis-like pain from Crohns"---it's a side-effect from crohns and prevalent all over the world--5 years of Remicade infusions were useless for my daughter--it's immuno-suppressive, it only suppresses the symptoms while the PATHOGENS continue to devour your bowels--go figure--work on "cures" and not "auto-immune fantasies" that western medicine is not interested in curing--they only want profits from their worthless drugs---23 years later and my daughter has an ileostomy, a looped, temporary one, but it's still an ileostomy---a waste bag glued to her abdomen which leaks...e-mail me and I'll send you the name of her enzyme wich corrected her arthritis-like joint pain--available by internet--become an Internet researcher and activist BEFORE you too need an ileostomy....PetrBray@ASOL.com
I can relate
by: Laura

Several months ago I had a similar reaction to the Remicade. I wasn't hospitalized, but I had SEVERE joint pain the day after the infusion. My jaw hurt so much I couldn't open my mouth. I was also told it was a reaction to the drug. The pain subsided after a few days.

I now have Benadryl and methotrexate as pre-meds before the Remicade and haven't had a reaction since.
Arthritis-like pain from Crohns
by: Anonymous

My daughter has taken an enzyme to eliminate arthritis-like pain from 23 years of Crohns, the last 5 years on useless Remicade--Work on a cure for Crohns, not worthless "immuno-suppressive" drugs that only mask the symptoms while the real pathogens continue to destroy your bowels--Study what the pathogen is in Crohns and follow it on the global Internet: MAP, mycobacterium avium paratuberculosis"--look it up yourself, become your own advocate, look what they are doing to eradicate it in England, Australia and Texas...don't be uselessly duped by BIG Pharma that it's a "auto-immune" disease--that's 1960's thinking! See Dr. William Chamberlin and others speaking at the 10th International Colloquium on Paratuberculosis in Minneapolis in 2009...it's all on the Internet...do a search---e-mail me and I'll send you the enzyme info, artritis-like pain is a symptom of Crohns...do a search, it's all on the Internet---PetrBray@AOL.com
Joint pain and fever
by: Anonymous

My mother has crohn's. Thought the abdominal pain has reduced she has fever and joint pain.

She has had fever forever after being diagnosed for crohns.

She complains a lot about fever. She feels if fever was not there there would be no joint pain and feels she could manage better.
5 years of Remicade useless...
by: Peter Bray

After 5 years of Remicade, my adult daughter Cathy, 43 found it to be useless...preceded by 18 years before that with sulphasalazine, Asacol, Prednisone steroids (with steroid psychosis and hospitalization more than once), and MP6...so now she has a looped, temporary ileostomy with stoma and external bag and continuing arthritis-like pains, which you may find are typical of Crohns...so do a websearch on the Internet for "Crohns and arthritis-like pains" and see what you too discover---Become your own activist and join as many Crohns support groups as you can and see what works or doesn't work for others---PetrBray@AOL.com

Benicia, CA

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Remicade and antibiotics

by richard
(Clovis, Ca. USA)

My son, 26 yrs. old, has Crohns and is currently getting Remicade infusions. He has developed a nasty chest cold. We are afraid it will turn to pneumonia. He had asthma when he was small and had pneumonia several times at that time as well. Should he take antibiotics while taking Remicade? Does it cancel out the effects of Remicade? I know that upper respiratory infections are a side effect of Remicade. Even though they are side effects, how do you treat them? Lots of questions in this situation. All input will be welcome.

Thanks and God bless

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