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Enbrel, Etanercept

Problems w/Remicade switched to Enbrel

Posted in the Enbrel, Etanercept Forum

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Showing posts 1 - 18 of18
Natalie

Goodlettsville, TN

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#1
Feb 21, 2007
 
Hello. I was diagnosed with Psoriatic Arthritis when I was just 13 years old. I am now 30. I have been on Methotrexate for the past 15 years and it has stopped working. So last March my Rheumatologist started me on Remicade and it was a miracle drug at first. But after 6 months it stopped working as well and wore off before my next scheduled infusion. Then, the week before Thanksgiving, I got very sick, very fast. I woke up that morning feeling fine, that night I was in the hospital. I had pneumonia and sepsis. I was very sick and spent 5 days in the hospital. So my dr. took me off the Remicade and wants to try me on Enbrel. My fear is that Remicade, Enbrel, and Humira are all the same class of drugs and all have the same side effects. I am very scared of getting so sick again with Enbrel. Sepsis kills people. So, my question is, have any of you tried more than one of these drugs and had side effects with one drug and then done fine on another? Any feedback would be much appreciated.
Dan

Saint Joseph, MI

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#2
May 31, 2007
 
I have not been on Remicade yet, but ny Rheumatologist wants to try me on it. I was diagnosed with Ankylosing Spondylitis about 4 years ago, I am now 33. I've been on Enbrel which I think is losing its effect now, but worked well the first couple of years, except I've been sick more than ever since it lowers yours bodies ability to fight infections. Just like you though, I'm
unsure of switching, since they are in the same class with the same side effects, I'm sorry to hear what you have gone thru, I would get all the information possible from several professionals. Good luck...
Cathryn-Remicade

Phoenix, AZ

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#3
Jun 3, 2007
 
Hello, all. On 5-3-06, I lost my father to congestive heartfailure. He had been taken off of enbrel, which was working wonderfully for his rhumatoid arthritis, and put on remicade. The day before my father's doctor upped his dose to the maximum, prior to this he was taking a 3rd of that. My dad died I believe as a result of taking remicade. We werent warned about the side effects of it at all. I believe from the research I have done that the remicade worsened my fathers congestive heart failure.

Below is part of the information I found about remicade:

In the warning letter sent to doctors, Centocor warned:
Patients with CHF should not start Remicade therapy.
Those with CHF who are taking the drug to treat Crohn's disease or rheumatoid arthritis should be reevaluated.
Doctors should consider stopping Remicade treatment in patients with CHF, but if they decide to continue, patients need to have their heart function closely monitored.

So to those of you who are thinking about taking remicade, dont do it. It has been known to cause congestive heart failure in those taking it that have no family history of heart problems. It has also been known to worsen heart problems as well.

I took care of my dad for almost 13 years and in an instant he was gone and I believe Remicade was responsible.
Sam- Embrel

Rockaway, NJ

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#4
Nov 9, 2007
 
My wife recently died from Sepsis while being treated with Enbrel. She was 42 years old and being treated for RA and when she complained to her RA Dr, they suggested she go see her regular general Dr. She dies the next day after having been on Enbrel for less than 12 weeks. I trust Enbrel as far as I can throw a piano.
Christine

Slidell, LA

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#5
Jan 26, 2008
 
My sister is in the hospital and is fighting for her life. She has sepsis and her organs are not working. Her RA doctor prescribed Enbrel and she has been sick ever since. My family believes the Enbrel was a direct cause.
Unknown

United States

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#6
Mar 28, 2008
 
Hello all. I was diagnosed with RA when I was 16 (2002). I've been on Methotrexate, Prednisone, Cortisone shots, Enbrel, Humira and am now on Remicade. Have also used pain killers such as hydrocodone (vicodin). My medications caused my RA to worsen, also caused infertility and pleurisy. Humira messed with my stomach very bad also. Couldn't keep any food in or any fluids. Made my stomach feel like acid was eating it up inside. Just had my first Remicade infusion March 26, 2008. I'm truely scared because I've read and heard nothing but bad things about it. Also, since I took it, I've had about 100 degree temp., chest pains and trouble breathing (can't catch my breath). Anyway, my rheumatologist and nurse told me that all these meds will be fine and nothing serious will happen, BUT they said it makes me more apt to get infections. And also, that's another thing...I've been getting UTIs, Bladder infections and Vag. yeast infections constantly and I KNOW it's because of these medications! So please please please....everyone be very careful!!! Trust yourself and your body more than anything! If you think your doctor's wrong....they probably are! I'm not saying never listen to your doctors, but I am saying to be very very careful and trust in yourself and your own body no matter how much somebody tries to convince you otherwise! Good luck to all! God Bless! Take care!
deirdre

Cincinnati, OH

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#7
Sep 8, 2008
 
Hello I have been diagnosed with Ankylosing Spondilitis and Had my first Remicade treatment on 08/26/08. I felt dizzy and light headed, penetrating bone and muscle aches, a major migraine which I still have, the inability to keep food down, a red blotch on the right arm bend where the IV was administered. Has anyone else experienced these symptoms? I called the doctor (RA)and I feel as though she does not believe I have had a migraine this long. I also contacted my primary doctor who referred me back to the RA. I am very leery of doing another treatment so I called the RA back to say I did not feel right about another dose of Remicade but she makes it sound as though there is nothing else for me to try...suggestions and advice would be appreciated....Thank you
Judy

Singapore, Singapore

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#8
Sep 9, 2008
 
Hi, I have been on remicade before. I recover from my still disease after using for 1 year. However, I got a relapse after stopping for 2 years. I tried to go back on remicade after the relapse but have antibodies reaction.
So now by doctor ask me to try enbrel. I will be getting the injection on enbrel tomorrow.
Kristen

Paramus, NJ

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#9
Sep 22, 2008
 
I have tried everything, first Enbrel which worked great until I got food poisoning (eating the same food my entire family ate and nobody else got sick) and was hospitalized for 3 days. All my medications were stopped and my psoriasis came back worse than ever within a week. Next I tried Humira. The first shot landed me in the ER with severe chest pains and difficulty breathing. All tests proved that it was not a heart attack, but an allergic reaction to Humira. When I asked the Humira rep that came to see me at my dermatologist's office if I could try to take Humira again, she said that then next shot would likely kill me. So that was that with Humira.
I started Remicade infusions and after a short while, the results were amazing.
However, the 8 week period between infusions was way too long for me and my psoriasis has come back. My dermatologist said we could try 6 week intervals, but that too is proving to be too long to wait. My psoriasis it back to "horrible" status again and starting 3 days ago, my fingers are starting to tighten and ache, after being without joint pain for several years. I am at a loss as to what to try next since I believe i have tried everything.
I wish everyone the best with whatever treatments work for you, and pray for the ones like myself who can't seem to get anything to work.:(
Nancy

Asbury Park, NJ

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#10
Sep 26, 2008
 
Wow - I feel really lucky that up until now I've had no side effects from either Humira or Enbrel. The Humira worked great for about 3 months and then lost effectiveness. I've been on Enbrel since last December (9 mos) and this week developed a rip-roaring vag yeast infection. After reading that they were common in women w/ compromised immune systems, I thought it might be related to the Enbrel. Bingo! My question is - what have you done for treatment? I used to use Monistat OTC. This time I've found it not has effective. I'm doubling up dosages and hoping that will do the trick. Any suggestions?
Lisa

Denver, CO

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#11
Jan 7, 2009
 
Hi all, I have been taking Remicade for Crohn's disease for three years and have had no Crohn's symptoms. I have had some irritating side effects but nothing as bad as the Crohn's was. I chronic sinus infections, always 10 days after the infusion and yeast infections on my skin that are tough to control. Other than that I am on the lowest dose possible and am premedicated with a steroid and benedryl before each infusion. I am sorry to read about the negative outcomes that some have had but Remicade has saved my life.
Natalie wrote:
Hello. I was diagnosed with Psoriatic Arthritis when I was just 13 years old. I am now 30. I have been on Methotrexate for the past 15 years and it has stopped working. So last March my Rheumatologist started me on Remicade and it was a miracle drug at first. But after 6 months it stopped working as well and wore off before my next scheduled infusion. Then, the week before Thanksgiving, I got very sick, very fast. I woke up that morning feeling fine, that night I was in the hospital. I had pneumonia and sepsis. I was very sick and spent 5 days in the hospital. So my dr. took me off the Remicade and wants to try me on Enbrel. My fear is that Remicade, Enbrel, and Humira are all the same class of drugs and all have the same side effects. I am very scared of getting so sick again with Enbrel. Sepsis kills people. So, my question is, have any of you tried more than one of these drugs and had side effects with one drug and then done fine on another? Any feedback would be much appreciated.
Jan

Midland, MI

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#12
Jan 10, 2009
 
I have had Ankylosing Spondilitis for 20+ years. I'm only 42. I have been off and on enbrel for 5 years. For the most part it has been great. I have had to go off it at least a couple times a year for sinus or yeast infection. This year has been tough with about 8 yeast infections. The only thing that seems to work anymore is the boric acid but I am now on a 30 day treatment. Kills the sex life. I can tell you every time I go off it, I am very much reminded how much it does work. It doesn't get rid of all my pain. I still take celebrex and darvocet. I also take a muscle relaxer to help me sleep. It is managable though. If I could never be on enbrel or a similar drug, life would not be managable. So I will continue to deal with the side effects till they find a cure for the desease.
Ort

AOL

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#13
Jul 24, 2009
 
Hi all. I have Crohn's and Psoriatic Arthritis and have been taking Remicade since 2006. I have also tried Methotrexate (did nothing but make me lose hair like crazy),Prednisone (which also did nothing but make me fat!!), and Asacol, which I currently don't take, and am currently on Immuran. I have gotten 2 yeast infections in the last month, and now am having some headaches that are less than pleasant. It seems to be sinus or migraine, depending on the day. More sinus than migraine though, thank God. Am I going to continue these yeast infections and headaches? I can't live like this if it's going to get worse.

I am on the highest dose of Remicade and I get it every 4 weeks. Before he raised my doseage, my right thumb was deteriorating, and my left ankle and right knee were bad. Now, they are better. I now have neuropathy on the outside of my left thigh, and it bothers me. I guess the good outweighs the bad, but Remicade still makes me nervous.
About Enbrel and Remicade

Sarajevo, Bosnia and Herzegovina

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#14
Aug 6, 2009
 
mrshollyhocks

AOL

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#15
Sep 11, 2009
 
I am very sorry about the loss of your dad. I'm on Remicade now and the hospital makes me hear the same speech on the risks, for every infusion. I think if my little hospital does this, then the medical field must have gotten better. I am super sorry about the loss of your dad. I miss mine too.
Cathryn-Remicade wrote:
Hello, all. On 5-3-06, I lost my father to congestive heartfailure. He had been taken off of enbrel, which was working wonderfully for his rhumatoid arthritis, and put on remicade. The day before my father's doctor upped his dose to the maximum, prior to this he was taking a 3rd of that. My dad died I believe as a result of taking remicade. We werent warned about the side effects of it at all. I believe from the research I have done that the remicade worsened my fathers congestive heart failure.
Below is part of the information I found about remicade:
In the warning letter sent to doctors, Centocor warned:
Patients with CHF should not start Remicade therapy.
Those with CHF who are taking the drug to treat Crohn's disease or rheumatoid arthritis should be reevaluated.
Doctors should consider stopping Remicade treatment in patients with CHF, but if they decide to continue, patients need to have their heart function closely monitored.
So to those of you who are thinking about taking remicade, dont do it. It has been known to cause congestive heart failure in those taking it that have no family history of heart problems. It has also been known to worsen heart problems as well.
I took care of my dad for almost 13 years and in an instant he was gone and I believe Remicade was responsible.
mrshollyhocks

AOL

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#16
Sep 11, 2009
 
On Remicade. Also, having all the same trouble with the "woman trouble". I think I'm getting a UTI and I keep a vaginal infection. This last treatment (yesterday) seems to have really helped my Crohn's Disease. Please, don't knock any treatment before you try it. Everybody's body is different and reacts differently.
Ort

AOL

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#17
Sep 11, 2009
 
Thanks for the reponses.:) I'm not knocking any treatment, it's just that if I'm going to keep getting these yeast infections and headaches, it's a pretty miserable future. As for helping my Crohn's, I'd say I'm way better than I used to be, although I still use the washroom anywhere from 4 to 8 times a day. A lot of things just go right through me, even after 3 years on Remicade. With the Psoriatic arthritis, I can honestly say that I don't notice a difference with my pain and inflammation. I hurt day in, day out, and it never stops. I have just learned to live with it.
I do know, however, that I am not getting any joint deterioration so that's a major plus. Not looking forward to joint replacement at my age (42) so I guess I'll keep taking this indfinitely.
CRIS

Coeur D Alene, ID

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#18
Tuesday Dec 8
 
Diagnosed w/Rheum Arthritis 1997, I was 51 yrs old, now 63. Took Methotrexate until 2004, self-injections to avoid stomach. Worked well, but I couldn't stand giving myself shots so would put it off, instead of 1x week got to 1x about every 10 days. Moved, new Rheumatologist put me on Remicade & continued Methotrexate 4x 2.5mg / 1xwee and Remicade every 8 weeks. Worked great for me. However, I did end up getting cellulitis in my lower legs, turned into something else?..no one really knows? Sent me to infectious disease specialists, dermatologists, and off the TNF drug/Remicade, until made sure not infected since "had open sores". In Atlanta, RA doctor said all the inflammation was caused by RA, cellulitis, will go away when back on drugs! Then moved again, had to go through the entire thing again, each doctor to prove it all out. So have gone through this twice, tried Enbrel, never worked, on it about 3-4 months. Back to Remicade, for me like a "magic pill? however not sure the cellulitis wasn't overall caused by these weird, high-tech, drugs? So, now off of Remicade since 8-5-09, taking Methotrexate again, very, very stiff in hands, wrists, shoulders...feel like I'm slipping into that dark place where no one wants to go.....but, and losing insurance at end of 2009 so trying to figure out what to do? If I can get back on regular Methotrexate through next year, then after I'm on Medicare [if it even exists for seniors??]...then I can address taking a TNF again then, if I'm able to get around. I ask for all of you to pray for me! That is the only sure thing! OK...that's all for me.
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