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So dependent on Remicade!

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Posted 9/8/2009 12:26 AM (GMT 0)
I was 7 weeks past my last Remicade and had the WORST flare ever - they thought it was c-diff at first but it was just my UC.
I got the Remicade and was better that night! It was like a miracle. So now I am bumped up to 6 week intervals. It's hard to handle the thought that
this is the only thing that keeps me in remission. I sure hope it doesn't ever stop working!
Posted 9/8/2009 12:34 AM (GMT 0)
I hope it continues to work for you. smurf
Posted 9/8/2009 12:41 AM (GMT 0)
I hope it keeps working for you. I wish it had for me.

Jen O
Posted 9/8/2009 12:45 AM (GMT 0)
hi shellies, i had my third iv of remicade aug 27. today is the 7 of sept. i feel more pain than before. i have a rash like poision ivy that comes on my body either face or arm after a week of iv. i am wishing and praying that it gets better. a family member told me about joint juice at walmart that has helped with my pain and stiffness. i am glad you are doing well with your treatment , me , not so lucky. i have been moved up to seven wks. it seems i have morer pain after each treatment was that the same for you at first? i stop taking taking the ibuprofen 500mg 3 times a day

because of the heart burn.i am still on the prednisone 5mg ,methotrexate 6 wkly and folic acid 2 daily for mouth sores. so good luck to you.

Posted 9/8/2009 7:54 PM (GMT 0)
Msmatt, so sorry to hear about your pain! I had my 5th infusion today and never had any pain after treatment. I don't take any other meds at all other than multivitamins. I was so nervous about Remicade in the beginning and apprehensive but I know without a doubt it works like a "miracle" for me! I wish you the best of luck finding something that works!
Posted 9/8/2009 11:11 PM (GMT 0)
thank you so much shellies, i am glad it is working for you. will be glad when i can say those words, soon i hope. wish you the best on your treatment.
Posted 9/9/2009 12:06 AM (GMT 0)
Because of the Remicade, I had a crash in my immune system, I wound up in the ICU and my parents were told to prepare for the worst. All because of a medication that was highly reccommended by multiple Doctors. Hope no one else has issues like this...
Posted 9/9/2009 12:38 AM (GMT 0)
Shellies, after about nine months on Remicade I needed to be bumped to every six weeks. Now I should probably be every 4-5 weeks as that's when I start to have symptoms again, but I just deal with it until the 6th week as I don't want to be taking monthly infusions.

When it stopped working so well I was finally able to seriously consider surgery. I found a lot of information online, and this site was particularly informative, it details several types of surgeries, how it all works, what you can expect during all stages of surgery and recovery:
http://www.colorectalcare.org/ipaa.html

You may not feel mentally ready for this step, I know it took me a good few years to even consider it, but from everything I have read and post-surgical j-pouchers I have talked to, their only regret was not doing it sooner. Learn what you can and consult with a surgeon -- the Remicade is buying you some time to be ready for the surgical option should it be necessary. Having the surgery while you are healthier from the Remicade will increase your chances of success.

I am planning on taking this step in January (I own and run a one-person business and it makes sense to wait until after the holidays to shut down for my recovery or I would do it sooner). It's a very personal decision, good luck.

Meesh
Posted 9/9/2009 1:06 AM (GMT 0)
     I've heard more horror stories about Remicade than any other UC med.  Soooo glad I refused it when my GI doctor tried pushing it one me two years ago.  Even his associate who took care of me when I was hospitalized last year told me I was NOT a candidate for it...whew.  Come to find out they had two fatalities in their practice with people on Remicade.  Think I will just stick with the 6MP for now and hope for the best.
Posted 9/9/2009 1:40 AM (GMT 0)
firegirl i wish u the best, i did not hear about any horror stories about remicade until my second iv. which this is my third. i thought i did research but i guess not enough. i just found this site a few days ago which has enlighten me , thank God. i am refusing my next iv wondering what my next med will be. the pain has been worst since i been on remicade. hope u stay well and positive and prayed up . thank you for your input.
Posted 9/9/2009 1:41 AM (GMT 0)

Both my GI docs said same thing - too dangerous - especially with mild to moderate as I have.  The new specialist said too dangerous for someone my age especially - he mentioned serious complications like infections.

ElaineNY

Posted 9/9/2009 1:43 AM (GMT 0)
Jen O , what were you on at the time ? If remicade what happen, may i ask?
Posted 9/9/2009 2:41 AM (GMT 0)
I thought Remicade was generally well tolerated. There are always one or two patients besides me getting Remicade whenever I am at the infusion clinic (there are two rooms, four chairs each room, I only ever know what's going on in whatever room I am in). So far mostly for Crohns or UC, although one woman was there for RA. Some need Benedryl, but all have had decent results with the medication. For Crohns patients, where a surgical "cure" is not really an option, it is especially a real Godsend.

I've never needed premeds, I haven't been ill (even though I work with animals), although I do seem to take longer to heal. Like, bug bites, if I should scratch, stay scabby for a few MONTHS (ick!). Mostly my GI is concerned about long-term effects, especially since it is not keeping me in 100% remission. His thoughts were that it is worth the risk if it is keeping me in remission, but since it's not, it's time to consider surgery. He said no big rush, but definitely within a year.

Statistically, more than one fatality in a practice is huge, and possibly indicative that they are not administering it properly or to the right candidates.

Meesh
Posted 9/9/2009 3:11 AM (GMT 0)
Two fatalities due to Remi in one practice sounds fishy.... I know that your post was not a survey request, but Remi has saved my daughter's colon. The studies for it being used on R/A are numerous. Even the overall Lymphoma risks are smaller than that! Of course there are folks that this drug does not work for, and for them I am sorry. When you get to the stage of needing the big biologics, you are almost out of tricks. The rash does not sound good either. Please consider checking with another practice about your condition and treatments. Good luck
Posted 9/9/2009 9:03 PM (GMT 0)
Going for my 3rd treatment of remicade. I have not had any side effects but I have not had a lot of positive results either. Deaths due to remicade are actually pretty rare. I have done a good bit of research and decided to take remicade after my GI made a great point. The odds of getting cancer or another major side effect of remicade are lower than your odds of getting colon cancer if you dont get your UC into remission. People on remicade should only be taking it as a last step before surgery. I dont think spreading horror stories in these forums is helpful to anyone. Its easy to read a forum with a couple of negative responces and formulate your opinion but that isnt complete research. msmatt make sure you look at reputable websites and look at both sides of each arguement. Also dont be afraid to take conflicting information into your GI.
Posted 9/9/2009 9:10 PM (GMT 0)
This is just another one of those times where you have to decide what risks you are willing to live with. For me I am glad that Remicade was not around and that I exhausted my medical UC care at 6MP. I had surgery and for the past almost 9 years have taken no medication. I know had Remicade been available to me I would have taken it; I would have taken anything. I guess the one thing I learned is that surgery was the best option, although I didn't know it at the time. I wouldn't trade my life today for a life with even well-managed UC.

Sue
Posted 9/9/2009 9:15 PM (GMT 0)
Going for my 3rd treatment of remicade. I have not had any side effects but I have not had a lot of positive results either. Deaths due to remicade are actually pretty rare. I have done a good bit of research and decided to take remicade after my GI made a great point. The odds of getting cancer or another major side effect of remicade are lower than your odds of getting colon cancer if you dont get your UC into remission. People on remicade should only be taking it as a last step before surgery. I dont think spreading horror stories in these forums is helpful to anyone. Its easy to read a forum with a couple of negative responces and formulate your opinion but that isnt complete research. msmatt make sure you look at reputable websites and look at both sides of each arguement. Also dont be afraid to take conflicting information into your GI.
Posted 9/9/2009 10:35 PM (GMT 0)
Raysare#1, thanks for the very sane post. Yes, spreading horror stories does no one any good at all. I was pretty apprehensive about starting Remicade and it's been very helpful.

Suebear, I am very much looking forward to joining your "club" and being colon and UC free, but I know it's going to a long road before I am back to myself, with the two surgeries and the adaptation period. I was in no way ready to take that step, so I am glad that Remicade was available.

When my flare was at its worse my daughter was in a residential treatment center and we were participating in her recovery and therapy, requiring several trips out each week (50 miles each way). If I was having surgery and in the hospital there's no telling how her stay would have turned out, she's currently in college and doing very well. For the better part of a year I have known that I would need surgery as the Remicade is being less effective. I was able to save as much money possible so I wouldn't be too stressed out about money while I am recovering and unable to work. While I hope to be one of those who has a speedy recovery and returns to work within a month, I need to plan as well in case I am not.

Remicade, used correctly for the proper candidate, is a very helpful medication.

Meesh
Posted 9/9/2009 11:35 PM (GMT 0)
I was hospitalized 3 times this year. Was scared to death to try Remicade. I have tons of anxiety and all I needed was to hear risks of lymphoma or serious infection. Two days after the 2nd infusion I was in the hospital with pleurisy and I was convinced it was from the Remicade even though the docs said no. They said most likely it was an opportunistic infection because my immune system had been suppressed by prednisone. In any case, I was going to refuse future infusions, but at 5 1/2 weeks I had symptoms. Nothing had been as bad as being sick and basically bed and hospital ridden for 3 months so I changed my mind and did the 3rd Remicade. My symptoms went away immediately and I was UC free until the next infusion. It turns out I had a really bad flare at 7 weeks (was going 30+ times a day, 102 fever too). I had the infusion and everything was gone that same night! As much as I hate the thought of being on a serious med like Remicade, when you are very very sick anything is better than being bed ridden with UC, being on prednisone or being in the hospital. With the Remicade I have a completely normal life and completely forget I have UC. I take no other meds at all. Maybe eventually I'll need surgery but this seems like a much better option for now.
Posted 9/9/2009 11:35 PM (GMT 0)

Guess that I am happy both my GI doctors and primary care say I am not a candidate for Remicade or Humira or ?  Since I am 69 I am hoping to "manage" this disease - testing for cancer when necessary, etc.  For those of you younger - getting second and third opinions is very important and not "jumping into" anything you will regret! 

ElaineNY

Posted 9/9/2009 11:45 PM (GMT 0)
For me, the risks of Remicade (which actually are pretty small, by the way) are worth it for quality of life. I spent five years in a horrible flare, going 20-30 times a day, heavy bleeding and a lot of pain. I'll take that miniscule chance of lymphoma, because without the Remi I just wondered why something that made me so sick couldn't at least put me out of my misery eventually.

If you have a positive TB screening, you can either take pre-treatment or decide not to take Remicade. Every drug has bad effects for some people. Just because one person has a contraindication to a drug doesn't mean it's unacceptably dangerous for everyone.

I agree, spreading horror stories has no place in any discussion at this board. I've been on Remi for more than 3 years and have never heard that anyone in the practices I have gone to died from it. A small number may have adverse reactions such as allergies, and a tiny number may develop lymphoma. But if my doctor's practice had two people die from any of the drugs we take, I'd be looking for a new doctor.
Posted 9/9/2009 11:46 PM (GMT 0)

suebear said...
This is just another one of those times where you have to decide what risks you are willing to live with. For me I am glad that Remicade was not around and that I exhausted my medical UC care at 6MP. I had surgery and for the past almost 9 years have taken no medication. I know had Remicade been available to me I would have taken it; I would have taken anything. I guess the one thing I learned is that surgery was the best option, although I didn't know it at the time. I wouldn't trade my life today for a life with even well-managed UC.

Sue

Sue this is very interesting to me. How bad was the surgery? How long were you "in bed" and how hard was it to keep everything clean before the j-pouch. Obviously this is the next step for me and I'd like to know more about it. The idea of being on Remicade forever is not appealing to me!
Posted 9/10/2009 1:09 PM (GMT 0)
Surgery is surgery and it is invasive and does come with significant recovery. I went back to my desk job at 3 weeks post surgery; most people wait 6 weeks. I was never "in bed" except for the first 24 hours post surgery. After that the surgeon's kick the patients out of bed to walk, walking is great for recovery. It took about a full year to recover and adapt but that was not a full year of sitting around. Six weeks after surgery I went camping/hiking. Three months post surgery I traveled through Europe and at six months I did a half marathon. My biggest complaints were fatigue that came due to the 2 years of being sick and joint pain due to prednisone use. Both of those took about a full year to resovle. I napped every day after work and just gritted my teeth during the joint pain. If nothing else you might want to consider a surgical consultation to learn more about your options as well as visiting www.j-pouch.org If you opt for surgery at some point, email me as I have more helpful advice.

Sue
Posted 9/10/2009 1:47 PM (GMT 0)
I've been on Remi for four years now; last month I had a clear colonoscopy with no inflammation, ulcers, or polyps...in total remission thanks to Remi. When I first started the Remi, I was so sick, and it gave me my life back. Now I'm looking forward to treatments every 12 weeks instead of 8 and then eventually will be taken off and moved to maintenance meds. I've read (and my doc believes this) that starting with the big guns to get things under control and then weaning down to a lesser med is not such a bad idea. I'm sorry some folks cannot tolerate the Remi, but I've been moderating this forum for many years, and a lot of folks who had success with the Remi are no longer posting...they are out living their life.

Posted 9/10/2009 3:58 PM (GMT 0)

Suebear - You did really good and very happy that it turned out so well for you. I have personally know of others who had great results.  I always say I would not have surgery except to save my life - probably yours saved your life.  If I were younger I know I would think differently.  At age 69 I know I think of UC differently.  I just want to be comfortable to do some things I can't do now - traveling and shopping.  You mentioned pain from using prednisone.  Does that pain ever go away and does it return each time you use prednisone and taper off it?  What about someone my age using small doses of prednisone to control the UC and arthritis?  I did quite well even down to 20 mg. or 15 mg. 

When my specialist told me he would not consider me for Remicade or others like that - he mentioned risk of infection because of my age - have you seen this?

ElaineNY

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