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Ulcerative Colitis
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Posted 7/10/2009 12:59 PM (GMT 0)
I made an appointment to start remicade on July 23rd.  I just need to vent here.  I'm really scared about all the side affects on remi.  Whenever I say something to someone(even the doctor or PA) they kind of blow me off like it is no big deal.  I am told that remi is my only option left.  I'm really scared of getting cancer.  The PA told me you have a 1 in 1500 chance of getting lyphoma cancer.  I had a grandpa, uncle and cousin all die of lyphoma cancer around age 50.  The doctor said that remi doesn't give you cancer you get it on remi if you are pre disposed to get it.  Well, it runs in my family I could be pre disposed.  I don't know if I'm just freaking out here but they told me they won't do the surgery without me doing the remi first.  I really don't want the surgery either but as my moms says I have no choice about the remi and if that don't work then I will need surgery.  Any support would be great.  I HATE UC.... devil   One more thing I was also told to get the Garvasil shot(HPV) because if you are on remi you have a higher chance of developing cervical cancer on that too.  Are all the side affects(infection, MS) really low odds?  Thanks
Posted 7/10/2009 1:06 PM (GMT 0)
good luck. i think the odds are low that serious side effects will develop. i can see your worry with the family history of cancer, though

about the gardasil, that would depend on your relationship status. I have never been offered the shot because I am 26 (they recommend it for younger girls) and am married. You only need to worry about it if you are in a position to get an STD. It prevents HPV, which can cause cervical cancer, but it doesn't prevent cervical cancer that is not caused by HPV
Posted 7/10/2009 1:12 PM (GMT 0)
I'm married with three kids.  She just said I should get it to be on the safe side.  I don't know.  I'm do for a Pap in a few months.  I wil see what the OB says.  Also, I know some people had questions about pregnancy with remi.  I was told you can be on remi get pregnant and stay on it the whole time you are pregnant.  Just thought I would throw that out there too.  I'm not having anymore kids but just thought someone might want to hear that.  I can't imagine having UC and dealing with trying to have kids.  I got UC(well the symptoms started when I was about 5-6 months pregnant with my third child).  So I never had to deal with that. 

Posted 7/10/2009 1:32 PM (GMT 0)
well, you don't HAVE to go on Remicade, despite what your GI says. And I think you would have no trouble getting a referral to a surgeon without having used Remicade- you may have to see another GI, but there is no protocol re. meds that must've been tried prior to getting surgery.  With your family history you're right to be concerned- although the risk is extremely low. The side effects concern me, but what bothers me more is the possible unknown long-term health issues that may arise from using Remicade. After all, it hasn't been in use very long, & we're basically the drug companies guinea pigs right now. But..... I still go for my infusions & have no desire to stop them. I figure, I can worry about what *may* happen down the road, or I can chance it & live today. I hope it works out for the best! I have never heard about a link between HPV & Remicade use- no one has suggested I get Gardasil. I am married though, & 38, & my pap's always come back ok with no signs of HPV. Which is odd, because I was told I had HPV when I was in my early 20's! Don't feel pressured into doing anything you don't want too- what meds are you on, or have you tried, so far?

Posted 7/10/2009 1:55 PM (GMT 0)
You always have a choice.

As Eva Lou points out, you may have to find another GI but there are other treatment possibilities, and there's nothing set in stone that says you must have tried Remicade before surgery.  In fact, there are medical practices that suggest just the opposite; surgery is preferable to Remicade.

Frankly, I would be reluctant to trust a doctor so flippant to my concerns.  Your family history is an important consideration, which seems to put you in the category the doctor suggests is at risk.

Maybe a second opinion on Remicade is in order?

Posted 7/10/2009 5:03 PM (GMT 0)
I have been on the brink of surgery twice.  The first was 5 years ago.  I went on Remicade for 5 infusions and went completely into remission.  Things were going so great that I actually stopped the infusions for 4 years (cost was too high).  But last year I had another horrible flare and had to start again.  I'm now in remission am staying on it.  Remicade did it.

I have never felt a single side effect and although being cautious is understandable and your choice, I personally choose not to live in fear.

Posted 7/10/2009 8:36 PM (GMT 0)
The meds I've tried are Asacol(allergic), Lialda(

allergic), and Imuran(allergic).  I'm on 20mg of pred right now until I get through my first three rounds of remi.  I also don't want the surgery.  I don't know what scares me more the remi or the surgery.  The doctor told me the surgery risks are alot greater then the remi risks.  I'm just nervous because lymphoma runs in my family.  I asked her about other meds and she said 6mp is the same as imuran if I'm allergic to that I will most likely be allergic to 6mp and same with the 5asa's.  She also said that my colitis is very severe throughout my whole colon and I need the "big Guns" to get my flare under control.  She said I don't have 3-6 months to wait for the other meds(methotrixate) to kick in.  I've been flaring for a year and a half now.  I don't know if I'm just being paranoid about the remi.  I know I can't predict the future but I have three kids that need their mom.  I know they also don't need a mom who is sick all the time either.  I have a one year old so surgery right now would be tough.  Thanks for the replies.  Also,  this is the second GI I've been too and they both said remi is my next option.  Thanks

Posted 7/10/2009 8:41 PM (GMT 0)
I have been on Remicade for two years, no side effects, no problems. But it hasn't gotten me completely into remission, and while I feel A LOT better with Remicade than without, I am researching the surgery and will probably go that route at this point.

I did feel that I had to try all he medical options first before having such major surgery. I am sick of feeling run down though and my GI says the long term effects of Remicade are just not known yet. He's comfortable with it for patients who are benefiting from it, but in a case like mine where it got me so close to remission but not all the way, he thinks getting that colon out is the way to go.

You DO NOT have to try and fail with Remicade before getting surgery. Find another GI.

You may want consider the Remicade though. It can actually heal your colon and if it works for you it can really be a godsend. With your fears though, you need to balance if you will be comfortable having the infusions or if you will be always worried and anxious. If you are healthy the surgery may be easier -- you may want to consider Remicade to get healthier prior to surgery.

Or if you're more comfortable contemplating having the surgery, go find a GI who's thoughts on the matter are compatible with yours. Does your insurance require a referral? if you have an open access policy just to find a surgeon. If you need a referral your primary care physician can probably give it to you and you won't need the uncooperative GI.

Some people are frightened of the surgery, some are frightened of the medications -- there are options and you need to do what feels right to you.

Meesh
Posted 7/10/2009 9:26 PM (GMT 0)
As stated, your GI doesn't make the decision as to when you can choose surgery; you and the surgeon make that decision. If it makes you feel better my tax accountant was taking Remicade and she did develop lymphoma. She was immediately taken off Remicade and her lymphoma went away. If you opt to start Remicade I would also encourage you to have a consultation with a CR surgeon so you know your options. If you ever have to make the decision to have surgery you will be better informed.

I think Guardasil is only for teenagers?

Sue
Posted 7/10/2009 11:02 PM (GMT 0)
maybe the gi means it will be harder to have your insurance cover a surgery until you've explored the other drug options
Posted 7/10/2009 11:51 PM (GMT 0)

I would get a second and even third opinion before doing anything.  Find one as I did - with years of experience!

ElaineNY

Posted 7/11/2009 2:28 AM (GMT 0)
Just wanted to let you know that with me I was on Remicade and had horrible side effects with it. But.. with having that issue with it, it gave me an open door to being able to take Humira. For now, Humira is an approved drug for people with UC who didn't respond or has stopped responding to Remicade. There are options, just need to know all the info before thinking that there is no other option. When I was VERY sick with UC, my GI told me that Humira is my last choice, but not that I have been in remission for a while, I'm thinking that I have more options because my flares have been very minor. Hope this helps.
Posted 7/11/2009 2:33 AM (GMT 0)
Hi, it's Hopeful4UC here.  I was very, very scared to try Remi, but not ready to jump into surgery yet.  I just had my second infusion yesterday.  The side-effects (immediate) have been mild for me.  Just tired, but I get relief from my UC symptoms not perfect yet, but the meds are trying to work and to get my colon functioning.  I too have pancolitis, pretty bad, low blood count.....basically the colon is so inflammed that it barely functions.  I see why you are very concerned about the risks of lyphoma  with the familly history.  As the previous post "Suebear" as far as some lyphoma cancers once you are taken off the Remi, the lyphoma cancer goes away.  A second opinion may help ease your mind a bit to help you make a decision thats more comfortable with you. 

Also, have you researched Remicade under the web site...UPTODATE, it's a site that gives you the stats on cancer, etc.?  Just speaking with friends Remi has been out there for awhile treating RA, another autoimmune disease with much success with minimal or no side effects for some.   This helped me decide to move forward with Remicade.  Hearing good effects of Remi may help you as well. 

Will be praying for you with what you decide.   :-)   

 

Posted 7/11/2009 12:57 PM (GMT 0)
Thanks everyone for the replies.  My doctor did say if the remi doesn't work I could maybe try the Humira but only if I'm not really sick.  Otherwise she would recommend surgery.  This is the second GI that told me remi is my next option and there will be a time when meds don't work for me and I will need surgery.  I'm not ready for surgery now either.  I know the GI that I see now is highly recommended and she specializes in UC.  She isn't forcing me but she said I really have no other options besides remi or surgery.  She said the remi is better then the surgery right now.  She said I could be one of the people that goes on it and it works really well for me and I can be on it for years.  She said why not try it.  She said humira isn't approved yet for UC and I can only try that if remi fails.  She doesn't see any signs that I have crohn's to get it approved through my insurance.  Again, thanks for the replies.  I'm just nervous but it's not in my hands.  I can't live in fear, right?  I really appreciate everyones opinions.

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