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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Doctor says Remicade- I am terrified


08-19-2010, 11:00 PM   #1
YogaGirl
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Doctor says Remicade- I am terrified

Hello, All.

So glad to find this support group. This is my first post. I have had Crohn's for six years. Was first diagnosed in Texas then moved to Atlanta, Georgia. Went through a terrible two years, then went into remission for three years (simple over the counter probiotic put me in remission), then the disease came back a year ago. These last few weeks have been horrendous. Pain and bloating. Had a colonoscopy two weeks ago that showed "No signs of anything wrong" (?????) then had an MRI yesterday that "seriously suggested Crohn's" (If not Crohn's, then what is causing this horrific bloating and pain?) The doctor said it looked pretty bad in the terminal ileum. No blockage, but lots of stenosis- possible fistula.

I just started my Prednisone tonight, and the doctor wants me to start Remicade next week. I am so scared.

This medicine seems like such a risk. I know that I have to do something about this most recent attack. I cannot live like this. The pain makes me want to die. But I have to stay strong, as a I have a beautiful little three year old girl who needs me.

I am considering suggesting to my doctor that I try LDN prior to the Remicade. It seems like there are fewer side effects, and since my Crohn's was in remission for so long with only a probiotic pill, I keep hoping that I can find a medicine with few side effects that will help me.

What do you all think? Should I push for the LDN, or should I just suck it up and accept the Remicade? Has anyone ever been on both meds at once?

Right now I am only on prednisone (which he is going to wean me off of as soon as I start Remicade). I was on Pentassa, which did not nothing. Then I was on Bentyl, which made things worse. I also take Ultram (Tramadol) for pain, but I hope that the prednisone will alleviate the need for that. I know I can't take the Ultram with the LDN and am willing to give it up if my doc will let me try the LDN.

I need my life back. My daughter needs her mom back. I really appreciate any ideas.

Thanks so much!
08-20-2010, 12:48 AM   #2
Scifimom
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I am just on the same position as you are so I can only offer {{{{Hugs}}}, I am currently of prednizone for fighting a flare and my doc suggested remicade Flat out in our last meeting. And I am scared SHITTLESS of Remicade and the side effects. I am also new in Crohns (diagnosed last year) and I think there are other possibilities first before I have to try the scary stuff.

On the other hand there are lots of people here who are having remicade infusions regularly, there is even a Remicade club where you can take some very good input.

So welcome and well... {hugs} again.
Scifimom
08-20-2010, 04:43 AM   #3
DustyKat
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Hi YogaGirl and

I'm glad you found your way here. As Scifimom said there is a Remicade Club on here and if you haven't already found it here is the link..........

http://www.crohnsforum.com/showthread.php?t=4544

This is a great place with loads of friendly people, support and info. Would you like to post in the Your Story forum so you can properly welcomed 'cause you would be a very welcome addition to the forum.

Welcome aboard!

Take care,
Dusty
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08-25-2010, 07:12 PM   #4
crazycanuck
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Im sorry but what side effects are you afraid of exactly?
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Diagnosed October 2007
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Tried Budesonide (april 2010-july 2010) & Asacol (october 2007- dec 2009) & Imuran (Dec 2009-Dec 2011)
08-25-2010, 07:28 PM   #5
YogaGirl
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I am afraid of the severe reactions some people have. I suppose I am mostly scared of the company's warning in bold black letters from their website:

There are reports of serious infections caused by viruses, fungi or bacteria that have spread throughout the body, including tuberculosis (TB) and histoplasmosis. Some of these infections have been fatal.


Taking a medication that is known to result in death is a bit concerning, even where death is a very rare side effect.

Are you about to go on Remicade? You have no concerns?
08-25-2010, 08:13 PM   #6
Lisa
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YogaGirl - I have been on Remicade since the fall of 2005..and so far the only adverse affect I have had is the weight gain from being 'healthy'!

So, for all the bad stories out there, remember there are also good ones!

As for the serious infections - that too worried me at first, but to tell you the truth - my husband and daughter have been sick more than I have been! Yes, I have been sick a few times....common cold (still went to work)...about 3 years ago pneumonia, this past year strep then lost my voice a month later....that is pretty much it for infections!

Remember - death can be a side effect of ANY medication! Depends on how a person reacts to it and of course the amount they take (in the case of an overdose).
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
08-25-2010, 08:46 PM   #7
YogaGirl
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Thanks, Pasobuff!

It is great to hear positive stories like yours. I hope you continue to have good results.
08-25-2010, 08:58 PM   #8
Pirate
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Hi YogaGirl, I was in the same position as you back in Febuary. I was really scared about whether to do the infusions or not. Thanks to the great friends on this forum I went ahead and started the infusions and I haven't regretted it at all. I haven't had any bad reactions from it other then I'm scared of cats. lol. Remi is made from mice dna/protien or something like that.
It has been a god-send for me as I have had CD for the last 24 yrs and the only thing that really helped was the steriods and thier side effects are worse to me.
Good luck and have fun with the Remi. You can really have fun with it and other people when they find out your taking something from Mice. I do.
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Current meds:REMICADE (CATS SCARE ME), Pentasa, Nexium, Probonics.
08-25-2010, 09:04 PM   #9
YogaGirl
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So glad to hear it, Pirate. Steroids have thus far been the only thing that have helped me, too. That and large doses of morphine and tramadol.

The mice thing bothers me a bit, as I actually feel terrible for the mice and don't want to be the reason that other animals lose their lives, but I know I can't continue to suffer and be a largely unproductive human being. If I go on Remicade and it helps me feel better, I will find a way to make it up to the Mouse Kingdom.
08-26-2010, 06:25 AM   #10
crazycanuck
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Yeah I'm about to be on Remicade quite soon and I'm actually very very excited about it. I've done the TB test and I'm all clear there to start. unfotunately those websites dont put all the good stories about Remicade on there which is why I try not to worry as much. Whats the alternative anyway? stay as I am? haha nope I've lost 14lbs in the last week and a half....Pred? heck no! that scares me more than anything... So its remicade or humira and I will not stick a needle in myself so we are left with Remicade. There are cases of severe and at times fatal reactions to tylenol, advil, or many other over the counter drugs but thats really nothing I can control so I try not to worry about it. This is my best shot at getting healthy, and sooner than later because university is just around the corner here and I can't be missing time like I did last year. I'm suprised I even passed haha.
08-26-2010, 06:55 PM   #11
YogaGirl
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Good for you, Crazy. I really hope the Remicade helps. Best of luck with university, too. That is a wonderful time of life.
08-26-2010, 07:46 PM   #12
acg101
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Hi YogaGirl and Welcome to the forum.
Like you, I was so scared to get on remicade. The more I read the more I was worried. My CD symptoms got worst and worst and my doctor was not pushing but letting me make my decision. True, Remicade has many potential side effects but it could be a miracle drug if it works for you. I was on it for over 3 years, out of which 1.5 years in 70% remission, which for me it was a god send.
good luck
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1. Diagnosed with Crohn's UC 1995
2. Flagyl/Cipro Imuran in 80%remission 1997 2005
3. Used 5mp, asacol, 6mp, remicade, imuran, Cimzia, entocourt, Flagyl/Cipro and enemas/suppositories until 2010 with periodic relief.
4. July 9th 2010 total ProctoCollectomy surgery! Free at Last!
08-26-2010, 08:24 PM   #13
Pirate
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Yoga, just watch out for the cats. The night I had my first treatment, I went out on my porch and ALL the cats from around was sitting at the bottom step staring at me. I was so scared all I could do was squeak. I could actually feel my nose hairs quivering. My ears were twitching and I couldn't move. Thank goodness my wife saved me with the broom.
08-27-2010, 09:25 AM   #14
Becky
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I have been on remicade for 3 yrs and not had any side effects. I was even on it during my pregnancy. I havent been sick besides a common cold here and there. With 2 little boys I thought I would be sick a lot more.

Good Luck!
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diagnosis- Oct 2006

remicade every 6 wks
09-04-2010, 05:12 PM   #15
JUSTINtime.
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yogagirl - welcome!

i was on remicade for just over 2 years. it put me into remission very fast but only for about a year. still worth trying! don't worry about the side effects really. only a super small amount of people actually get them. my GI told me the percentages are so low they don't even matter (she said less than 1%). the black box warning is only there for your knowledge.

plus if it doesnt work, you can try humira. i was afraid of it at first but just had my first injections. virtually painless and WAY quicker than remicade. 10 seconds compared to 4-5 hours.

its funny how your okay with taking pred. i am terrified of steroids! the effects are scary!

i wish you luck! don't be afraid! be strong for your beautiful daughter!
09-04-2010, 06:24 PM   #16
Crohns08
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Yogagirl, I know how you're feeling! My doctor flat out told me he wanted me on a biologic! I am not a fan of them and knowing my bad luck I would be the case that would get an infection (especially since I'm going to a big university, HELLO!) or develop cancer. SO, I'm doing everything in my power to try and subdue this disease. I'm trying diets, other less risky medications (LDN), nutritional shakes, you name it!
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09-06-2010, 04:04 PM   #17
YogaGirl
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I really appreciate everyone's support. After long discussions with my doctor, we finally opted to try 6-Mp before going on Remicade.

I don't like that it takes at least a month to see if it works, especially since I am having a tough time now and am on 20 mg of Prednisone which is not working very well, but am hopeful that it will work without having to go on Remicade.
09-07-2010, 08:09 AM   #18
acg101
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I really appreciate everyone's support. After long discussions with my doctor, we finally opted to try 6-Mp before going on Remicade.

I don't like that it takes at least a month to see if it works, especially since I am having a tough time now and am on 20 mg of Prednisone which is not working very well, but am hopeful that it will work without having to go on Remicade.
Hi Yogagirl- it takes 6mp quite some time to become effective in ones system, about 6 weeks.
good luck with your journey.
11-23-2010, 09:30 PM   #19
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I am afraid of the severe reactions some people have. I suppose I am mostly scared of the company's warning in bold black letters from their website:

There are reports of serious infections caused by viruses, fungi or bacteria that have spread throughout the body, including tuberculosis (TB) and histoplasmosis. Some of these infections have been fatal.


Taking a medication that is known to result in death is a bit concerning, even where death is a very rare side effect.

Are you about to go on Remicade? You have no concerns?
I soooo know where you are coming from! I was first offered Remi before it came on the market as a test subject. Insurance wouldn't pay for it but the drug company was going to. When I read the side affects, it scarred the living you know what out of me. I wouldn't touch it with a 10 foot pole. That led to many years of suffering and surgeries for the fistula.

I have now been on Remi for about 6 years and have not looked back. Take my premeds of 1 benedryl and 2 tylenol, have a 2 hr nap and feel better. I am on it specifically for fistula and it has been a miracle drug for me. I went off it for 18 months to try Humira as it was cheeper for me. It didn't work as well so went back to the Remi. Been back for just over a year and am so glad I changed back. It is a god send for me. I have never had a bad reaction.

I go to a major medical center (cancer treatment center) to have my infusions. At my last infusion just last week, I asked the nurse if they ever had anyone have a bad reaction. She said they give Remi infusions left and right and have not seen any yet.

So, as someone else here said, there are bad reactions to any drug and if you ask enough people you will get the negative answers. I am here to give you my positive answer and hope it helps.

You will make the correct decision for yourselt. Hang in there!
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11-23-2010, 09:33 PM   #20
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Yoga, just watch out for the cats. The night I had my first treatment, I went out on my porch and ALL the cats from around was sitting at the bottom step staring at me. I was so scared all I could do was squeak. I could actually feel my nose hairs quivering. My ears were twitching and I couldn't move. Thank goodness my wife saved me with the broom.
OK, now that's funny! Maybe that is why I am currently trying to type over 2 cats! Always wondered why they really like me these days....
11-23-2010, 10:22 PM   #21
kslade
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Have you tried Azathioprine? That's another option as well. It works for some, and doesn't for others. Fortunately for me, it has worked. I am currently taking both Remicade and Azathiprine now.
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11-30-2010, 11:44 AM   #22
Lydia
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I was in your position too. I have a 2 year old. I was really sick. In a lot of pain. I didnt even have pain medication stronger than tylenol. I was close to need surgery. I developed a few fistulas. I was bad off. I suggested LDN to my GI doc but he said the study group wasnt large enough for him to recommend it. He wanted to give me something that would give fast results because surgery was my only option if it didnt work. I told him my worries about getting cancer. He said untreated crohns is also a cancer risk.

I took the remicade and I went into remission in 4 days. 4 DAYS. I can eat what I want, although I still eat healthy. I mitigate the cancer risks with green tea and green smoothies. If I feel myself getting a cold I take herbal immune boosters. I take vitamin C and D every day. My immune system is still good enough to handle a cold or stomach bug. I recover at the same rate as my husband and daughter.

As for side effects i have none for the most part. I do get random abdominal pains about every month or 2. They last for a few hours and then I am better. I am not 100% sure its from the remicade, but if it is, I will take that over the hell I was living before. My premeds are claritin, solu-cortef, and tylenol. I feel a little tired on infusion day and then I am fine.

I never knew how bad the pain was affecting my parenting until I felt better. I have so much more patience and energy. We are a much happier family because of it. I take every day as it comes and I am grateful for each day that I am not in pain.
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