Anyone concerned about the poisonous effects of Remicade, and Humira ?

I would like to know if people who are taking Remicade, and Humira and maybe even all the other poisonous drugs out there are concerned with what may happen in the future? I have had Crohn's disease for over 30 years. The first 15 years I was hospitalized a few times and misdiagnosed. What a blessing. I never took the poison, I had 3 healthy (big) sons and always got better on my own. When I was 33 years old I was very ill. I had a 104 temp. and was severely dehydrated. I was admitted to the hospital and finally diagnosed. I was treated with Prednisone on and off for ten years. 6 MP (Purinthol) 3 years then again for 3 months. Asacol throughout Penatasa, and sulfasalazine. After getting Pancreatitis from the 6MP in 2006 I was removed from this drug and had surgery. They removed almost a foot of my lleum and Cecum. I had about a month as I weaned off the Prednisone of feeling decent. Crohn's came back. I was no longer a candidate for many of the drugs because of the Pancreatitis. I had no problems other than your typical Crohn's symptoms everyday which is a walk in the park if you have ever had Pancreatitis. I have 5 major cases of Pancreatitis recently ( all within the past 2 years) My Amylase and Lipase were 9000 the first time and every time after that they have been in the thousands. I just found out I have biliary strictures and have gone to the world renown Pancreas Center in New York. I was also told yesterday that I have PSC You can look that up. The concern to me is that I had a lousy GI doctor who when I asked about the Pancreatitis being from Crohn's he said it is called PSC don't look it up, it is a horrible death sentence. Your Pancreas turns to stone and you die. SO? Get off the poisons. Climb up your GI doc's butts and don't just listen to them like they are GODS. Would they give those drugs to their own family? Maybe you feel good today but 10 20 years from now when you are losing your vital organs will it have been worth it? Not trying to be a Debbie Downer. I just want everybody to make sure they have tried other forms of treatment that are not as toxic. If you ever see the commercials for those drugs. They tell you all the horrible things that will happen to you if you take them. There are more bad things than benefits.

Edit:  I gave your thread a title.

Post Edited By Moderator (stkitt) : 5/9/2014 11:47:30 AM (GMT-6)

I'm also very sorry for what you're going through. It's really horrible. You've been dealt a raw deal. But...like Gumby said, this is a complicated disease and it's different for everyone. The docs definitely aren't gods and hopefully anyone who deals with a chronic illness would take the initiative to be their own best advocate- to research their meds, to ask their doc questions, and to get a new doctor if you don't feel like your current doc is helping. These doctors never know how any given med is going to affect any given person. They do what they can with what they know and hope for the best. And we hope for the best. There are no guarantees.

I have been on biologics, steroids, and DMARDS for over 20 years. There was no other route for me to try. Diet changes have helped, but would not have saved me. Because of the meds I've avoided surgery, I've had 3 beautiful children, and I've been able to live a life I couldn't have otherwise. So, while I don't know what is down the road, I certainly wouldn't have what I have now if I didn't take the meds.

I'm really sorry for all that you're going through. I hope your current docs can help you with the best medical care possible.

Stef

I just want to reiterate what everyone else has said. The drugs are intense, yes, and some can cause some pretty harmful side effects. But those are rare. I'm so sorry that you're one of the few that had that happen. However, I know for me, the decision to take them was based in the fact that I could either die of Crohn's now by it not getting treated (diet, etc. was not enough to get it under control and I was SICK) or have the possibility of getting something that could kill me later.


Edit: And I, too, had pancreatitis from medications. I had a feeding tube for a month even months after stopping the meds because we couldn't get my lipase down. This past January, almost two years after stopping the meds that can cause pancreatitis (meslamine and imuran), I had a flare-up of the pancreatitis. So I do know to an extent a bit of what you're going through and feeling.

Please forgive me for how angry I sound in my post. I believe that is why I made the Debbie Downer comment. I am not trying to tell people not to take the meds. Just beware. I only have my own experiences to go by and 15 years I was not diagnosed. Ironically I actually was diagnosed in 1982 by a group of doctors who I used for a time. My diagnosis was a malabsorptive disorder. Possible Celiac sprue. To soon to tell. That test was never repeated. Upper GI with Floroscopy. Every time I was sick after that they would do a Sigmoidoscopy. I never had a colonoscopy. I would ALWAYS get better on my own. Until 1993. Pretty good run no drugs. I have been there. If somebody offered me rat poison and said it would help me I would have taken it. That is how sick I was.

I am just very angry that this is my outcome. I am not blaming the doctors. I went to one doctor who gave me 6MP and I was doing great until I got Pancreatitis. I literally stopped taking the drugs again and never took anything once again other than Asacol. (not everyday) and then not at all for 7 years. I did get very sick again went to another GI doc who told me they had developed a sensitivity test for 6MP. I could take it again. He did not feel the 6MP caused any of my illness (Pancreatitis). 3 months later my enzymes liver and Pancreas shot through the roof. So I was removed and told I am not a candidate for any of these drugs. Remicade and Humira are the same type of drugs. They scare me. I have heard very scary stories about them. Prednisone as toxic as it is has been the only medication that actually helped me. Once again, I am sorry I insulted people with my post. I was not blaming my doctors other than my last doctor who has been wrong about every thing that is going on with me. It is my own situation as somebody else said. I was just dealt a raw deal. Sorry I offended anybody.

Thanks for explaining your situation further, and thanks to Tom for the nice post.

Well, unfortunately Crohn's being left untreated can be just as deadly. It's a catch 22. No one knows what the future will hold for us. All we can do is live for right now, and right now I need relief. To have some quality of life. Looking towards the future I feel it's better to try and treat the Crohn's, and try to keep the damage to as minimum as possible.

I've had pancreatitis, just this past March, from Imuran (sister drug to 6mp). One time was it for my doctor, those drugs are on my allergy list now. I know how awful that is, and my heart goes out to anyone that has dealt with side effects from the drugs. But that doesn't mean everyone will, and it doesn't mean all of the drugs will effect us bad when one has.

I wish there was another way to treat this, that I actually could believe in. I don't think any of us are happy that we have to take these medications. But I also know that Crohn's is a serious illness, and not something to mess around with either. Everything comes with risks unfortunately.

Ironically I had a history of yeast also. At my age 54 and also because of the medications, I am post menopause since the age of 40. I have not had a yeast infection since.

I used to smoke cigarettes. Doctors have been telling me to quit for years. They tell me it makes Crohn's disease and Pancreatitis worse. I think today they would tell you smoking causes everything. Almost 5 months ago on my 4th Pancreatitis attack I almost died. I was in the ICU. I had to have a central line put in because all the fluid they gave me to treat the Pancreatitis 3rd spaced. I literally had every electrolyte washed out of me. I have no memory once the pressors were put in my neck. I was told that all I did was try to escape to smoke. That was enough to make me quit. Back to the point. I chew a lot of gum because I quit and it helps when I want to smoke. I think I have yeast on my tongue from all the gum. If it is not that. I don't know what it is.

I always wondered the connection between yeast and Crohn's and I would get excited about your misdiagnosis but I had a foot of my intestine removed in 2006 and it was biopsied. I still believe there is some kind of connection.

You are very lucky hldgood.

Just lucky I guess...if you call getting Crohn's at all lucky at any age! I had IBS-C since childhood...I suppose it could have been very mild Crohn's, but I don't really think so. I think we have a genetic propensity for the disease and then something triggers it. I was diagnosed with Crohn's very shortly after my mom was diagnosed with cancer...it was a very stressful time, but who really knows???

I'm so sorry to hear what you've been through. I didn't realize until today all of the awful side effects these medicines can cause. I just recently got off of Prednisone which caused some superficial side effects like face swelling and facial hair growth.

I'm now on Azathioprine and after some research I read a huge list of horrible side effects, including the fact that it's a known carcinogen. It's also been making my hair fall out (not as important in the grand scheme of things, I know, but still depressing).

My doctor also mentioned Humira as a possible next treatment but after reading about peoples' experiences with it and the side effects I am not going to bother.

I am just so depressed. I'm only 20 and was just diagnosed with Crohn's about six months ago. After trying treatment after treatment, and reading about the complications from Crohn's and people's personal stories, I feel as though I have been given a death sentence. Like my life is already ruined.

I know we should always have hope but after seeing my brother go through a six hour surgery last summer (he's only 26) from his Crohn's and knowing that even after everything it always comes back, and there is no cure..I don't feel particularly hopeful about the future. Especially since I have decided to quit taking these drugs and just try to deal with my disease on my own.

Sending good vibes to you and everyone else who has to deal with this awful disease.

ETA: Not trying to insult anyone who does decide to take the drugs. I'm sure for some people they help immensely. As another poster said, we all have to decide by weighing the risks and making the best choice for us. If these drugs have helped people I am glad. I am just trying to make the best choice for me, not speaking for anyone else! (=

Post Edited (marmaladechainsaw) : 5/14/2014 11:03:05 AM (GMT-6)

I was diagnosed with Crohns when I was about 10 years old. I was treated for a couple years with the asacol and 6MP and still had some symptoms. When I was around 13 my doctor told me about Remicade and I started getting it every 4 months (16 weeks). By the end of each 16 week period I was starting to have very minor symptoms but nothing awful like before and after the next infusion I would feel great once again. This went on for approximately 8 years then I switched to a more local doctor who advised me to go for Remicade every 8 weeks as that was the accepted norm. I did this for about 5 years without a single issue from crohns or other side effect until 2 years ago I had hip/groin pain and after a long time and many trips to multiple doctors they found that I had a giant cell tumor of bone in my femoral head. I went in for surgery to have it removed and was told that the chance of recurrence is very rare. 6 months later the tumor had recurred. The surgeons went in and removed it once again removing the tumor and more surrounding bone/tissue than would normally be done then froze the remaining tissue which is supposed to kill any remaining tumor cells. Once again, 6 months later and I had pain and found that the tumor had recurred. At this point I started to wonder what environmental and diet changes I could make that would help my odds of beating this tumor. I started eating a healthier diet and started juicing carrots, kale, ginger, spinach, apple, banana etc 3X a day. I also wondered if my Remicade treatments had anything to do with tumor growth and re-growth so i discontinued use of Remicade as at this point my hip and leg use became a much greater concern to me and I didn't want to be using any foreign drugs that I didn't need to. This third surgery my surgeon told me there really wasn't enough bone left to save my femoral head and that a hip replacement would be my option to keep use of my hip and also have the best chances of keeping the Giant Cell Tumor from returning. I agreed and I had a full hip replacement done. It has now been 2 years since that final surgery and no sign of tumor yet. I have great use of my leg and am regaining my muscle strength from the 3 hip surgeries nicely. However, my  Crohns has returned now and juicing seems only to inflame my condition more. My doctor has advised to stay away from raw fruits, veggies etc which I cant deal with as I want to eat healthy and boost immune system. I don't want to go back to Remicade (or possibly now to Humira if I have developed anti-bodies to Remicade) but I also can't go through life not eating immune boosting things I love like raw fruits, veggies, nuts etc... Not sure what to do or if there is anything more natural I could try first. I have no idea if my Remicade use had anything to do with the original tumor growth or the recurrences but it was an extremely scary situation and I don't know that I'm ready to try it and just hope it had nothing to do with it. My doctors all say there is no known link between giant cell tumors and remicade. But that obviously doesn't mean there isn't  

Donttrustthe meds

I think your message is still correct "Climb up your GI doc's butts and don't just listen to them like they are GODS."
The only person who really cares about you, is you (and your family). Given this you have to be in a position to make your own decisions. Right or wrong, I see the doc as one source of information, but most certainly not the only source and for sure not the decision maker.
Also, your second point that the medication is dangerous, and needs to be seen that way, is consistent with my understanding. It scares the hell out of me. That is why I try to do anything I can to avoid it.
Many go to the doc, who tells them, the only thing that can help is medication. They believe it and do not even try other things that have helped many.
I teach my kids all the time, they have to be responsible for their health and they should not blindly trust anyone when it comes to really important health decisions.
So sorry with what you are going through, and thank you for taking the time to share
David

hmm, when someone talks in the forest and no one is around to hear, does it still make a noise???
Thanks
Dave

Well, CD left untreated is not an option..Some drugs can lead to other problems ruin your pancreas and liver ect while in some people it doesn't..I don't think predisone is a more dangerous approach than biologics..I got from 2008 till today on it without damage..I know that statement might make some people on the board scream..but I may opt for a biologic at a later date..but there is a risk..I see it as I read death files for a living..I honestly feel your pain and acknowledge this happened to you..This is my argument about this DD and has been since 2004..what is worse the DD or the drug options that are given..You remove one part you get it another..There is not one line of treatment that works for everyone..and there are risks ones that are greater than this DD..