Chickening out on Remicade?

Hi all!

Some of you know that I just had my first baby two weeks ago so some of this may be due to post prego hormones messing with me. However, I'm freaking out over starting Remicade this Friday.

I keep reading all of this awful stuff (people getting cancer etc) on this Remicade Facebook group. Ugh, it makes me want to back out especially now that I have a baby who needs me around! Is the cancer risk really that huge? There are so many stories!

it's been so long since I was on Remicade but I remember my GI saying the cancer risk was extremely rare. Talk with your doctor and see what the percentage risk is for developing cancers and any factors that would lead you to be more prone

I think some of the groups are hyped, but I have no 1st hand experience.

But you ask your doc for the latest/best risk profile. Maybe even explain how many stories you are seeing. Then you either trust them or not.

Congrats on your baby.

There's risk in everything, but putting that risk into perspective is key. I've seen one case of non-Hodgkin lymphoma posted on healingwell due to a biologic in the last 4 years. The person discontinued the biologic medication and was able to get his/her lymphoma into remission. During that same timeframe, I've read many discontinuing mesalamine due to intolerance, heart inflammation, blood abnormalities, etc. Any medication has a small amount of risk, usually the odds of benefits far outweigh those risks.

As far as actual odds go. The odds of lymphoma are 6 in 10,000 (or 0.06 percent) compared to 2 in 10,000 ( or 0.02 percent) for the general population. Assuming you're on biologics and immunomodulators simultaneously. Of those who get lymphoma, 66 percent are able to put their lymphoma into remission. The only cases in which it occurred during the initial clinical trials was in adolescence males (2 cases, I believe) who were also on imuran/6mp at that time. So, often gastroenterologists will say to their adolescence male patients, be on either immunomodulators or biologics, but not both concurrently to lower their risks.

To put the odds into perspective, the odds of death by car crash in the US are 1 in 133. The odds of death due to heart complications are 1 in 5. So the odds of biologics causing trouble comparatively are quite low. The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

My gastroenterologist said they've never had a case, themselves, within their practice. They have offices in two towns in my state and almost a dozen gastroenterologist specialists.

Maybe the Dr would let you at least try to see if the Lialda will hold you now that the pregnancy is over. You can also add in Rowasa (if you can tolerate it). You could always keep the Remi in your back pocket if things don't work out. Also it takes time but if you are in remission now and have some time.... Entyvio could be an option. Supposedly it is gut specific so it shouldn't effect the rest of the body.
B

I completely understand your fear! I swore up and down I would never use a biologic. My friend on humira said...just wait and see when things get bad. Wel, things got bad. My dr suggested remicade for months. I resisted. I anguished. I cried.

Then I had a flare that wouldn't stop. I sat in the hospital for 4 weeks. Going to the bathroom 25 times a day. They refused to discharge me because I was considered high risk for toxic megacolon. My dr came in and offered remicade and I caved and haven't regretted a moment. He said same things about odds as ipoop gave you. He also mentioned that men aged 14-30 were higher risk.

As far as skin cancer. I see a dermatologist twice a year and she watches my skin carefully. I also take extra precautions in the sun.

I think you'll feel better once you make a decision. The longer you agonize the harder the decision.

Hugs to you and baby!

It's a low chance of cancer when you look at the statistics. In reality, the concern of missing out on your child's life is much larger with active UC flares, than the chances of developing cancer from remicade. The real question is, are you better because your hormones are controlled, or are you better because of steroids? The problem with waiting, is that some of these drugs work better when symptoms are somewhat controlled (entyvio) - but i don't think that's the case with remicade necessarily. It seems like that either works for you, or it doesn't. I guess if I were in your shoes, I would see if I could maintain with the Lialda and only go to remicade if things are getting worse. I wouldn't wait long if I noticed anything worrisome. It could spiral out of control quickly. It's possible your UC could let up now that the preganacy is over. I have a girlfriend who said her's got much more manageable after giving birth.

Might as well wait till you need it. I waited and when I finally used it, I was a nonresponder. At least in my case, I was 100% sure I was a nonresponder because I was having symptoms when I started and there was zero improvement. With entyvio, I started it when I was 100%, and on steroids, I failed that too. It didn't keep my symptoms away. I got worse as time passed.

Thank you all so much for your comments. I had my post op appt today for my csection and discussed this with my obgyn as well. He suggested contacting my GI and explaining my thoughts...always a good idea. He thought that if I do this under duress that I could end up with a post partum depression issue. I'm obviously super stressed over it.

So, I contacted my GI's nurse via their messaging portal. I also cancelled my infusion for tomorrow bc I can't deal with it tomorrow..I need answers first. The nurse got back to me and said that my GI would call me to discuss further but that "this was the plan."

I am so frustrated bc I feel like this is the only option being offered and I am obviously not ok with "the plan." I guess we'll see what the phone call brings.

notsosicklygirl said...
What option are you hoping for? Can you try imuran or 6mp? Would you be more comfortable with one of those? Since you're doing well, you may be able to wait the time needed for one of those medications to work. I think you're smart to not rush into starting something. You need to feel comfortable. No reason to rush. Just don't wait too long and let the UC get out of control. I am all for hoping for the best with the minimum amount of drugs, but it never worked for me, so I try to be realistic.

Thanks notsosickly. I would love to see if I can get off of prednisone and go back to just Lialda, Canasa, and Uceris foam. I'm wondering if the pregnancy was what made me flare to begin with and if, now that it's over, I could remain stable on those meds.

Thought I'd jump in to encourage you give a good look at the stats.
In my view it is worth the risk.
I got UC symptom free quickly. I was kicking myself for not starting it earlier. Plus I stayed symptom free for over a year after I had to stop it.
I was just in that very small % who had an adverse effect. But I recovered from that. Even looking back on it, with all I went through, i'd do it again.
Remi has been so effective for so many!

I'm guessing you were not able to breasfteed , or were you able to ? I could not bc its iffy to do it at this dose of prednisone and plus I needed bentyl for my cramps.

GMSAF said...
Im in such a parallel situation as you , thanks for posting. I'm on prednisone now in the middle of a postpartum flare, trying hard to taper prednisone. Delzicol had been subtherapeutic during my pregnancy so they switched me to Lialda too and I'm crossing my fingers that when I taper the prednisone it will hold me in remission so I can avoid the biologics , I have the same fears and concerns as you. Unfortunately the prednisone taper (sucks so bad to be on steroids when you have baby weight to lose, yes??) isn't going well. I'm stuck at 30. I hope we both are just in post pregnancy hormonal hell and that once our bodies normalize the biologics can wait another day ! But if you need it , better to feel better and enjoy the little ones than suffer unnecessarily long.

So sorry that you are dealing with this too! The real issue for me right n is that I'm feeling good so it's very hard for me to rationalize starting a biologic at this point. I don't want to do it unless I really need it. Btw, I am able to breastfeed on pred...was told it's totally fine by every doctor. Maybe check to see if you can? You might be surprised!

So I had cancelled my appointment for last Friday's infusion and had emailed my doc with my concerns. I was contacted immediately by his nurse who said they would be in touch that day...still haven't heard anything. So, I'm still hanging out with all of these unanswered questions/concerns and I have no idea what my next move is. Maybe it should be to find a new doctor who cares that I'm freaking out about the plan...