HealingWell
Search Close Search
☰

6-MP, Remicade, and Lymphoma

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/4/2017 12:32 PM (GMT -5)
I mostly need help in suggestions of who can advise me on something, but some of you may have the answers already.

My new GI suggests Remicade, not 6-MP, may be better for me. I need help figuring out whether to make the change (he will support me, either way). Here is a bit about me and my thinking.

I am fortunate to go years in remission. I'm symptom-free right now and have had only a few episodes over the past six/seven years since the most recent surgery. That surgery was a strictureplasty. Except for a month of issues after a colonoscopy, episodes are pain that passes in one night and is clearly caused by gas.

The first surgery I had was about 35 years ago. They removed the ileosecal valve and that point is and has been very narrowed for a long, long time. Eat the wrong things, and gas gets stuck there, causing terrible pain.

Doctor's notes from a recent colonoscopy are almost identical to notes from one ten years ago: that area is tiny, has some ulceration. Most recent notes also say there was "moderate" inflammation.

I've been on 50 mg of 6-MP for over 15 years now. In that period, I did develop new problems and had a stictureplasty, which means 6-MP has not been perfect. Nothing is, right?

I also use hookworms (for about 4 years now), which seems to help a lot. The time in which I have few episodes is more than doubled at this point. However, their effect probably does not go as "low" in the intestine as the ileosecal area.

The issue is how Remicade compares to 6-MP.

They both have warnings about lymphoma. Question 1: If I have not developed lymphoma so far with 6-MP, does that mean I am less likely to?

6-MP has not fully prevented inflammation and the eventual need for surgery. Question 2: Since I go so long without problems and don't have symptoms now, how would I know Remicade is working better?

The very narrow part right at the end of the small intestine is essentially a mechanical problem but inflammation there surely makes it worse. Question 3: Which medication is better at preventing/treating inflammation way down there? (Remember, most recent colonoscopy notes include "moderate" inflammation.)

I have a very bad feeling about Remicade, but I only recently learned 6-MP can also open us to lymphoma. This ties back to question 1 but I'll add this question 4: If I FEEL I will get lymphoma if I go on Remicade, doesn't that mean I should avoid it?

What kind of specialist or advisor can help answer those questions? What are your thoughts? Thank you, in advance, for your help.
Posted 8/4/2017 12:36 PM (GMT -5)
I forgot some things. This note from the most recent colonoscopy may be important:

"NO polyps seen. I did biopsies of your small bowel and colon to look for how severe the inflammation is.

The small intestinal biopsies show some, acute inflammation though the type of inflammation is different than the type of inflammation we see with Crohn's."

Also forgot to say the GI who did the recent colonoscopy was new to me (GI retired) and we did not communicate well. The GI who suggests Remicade is the newest. He seems to be a keeper smile
Posted 8/4/2017 3:00 PM (GMT -5)
Remicade is more effective than 6MP and the lymphoma risk is lower with Remicade than it is with 6MP. I wouldn't worry too much about lymphoma either way: it's a remote risk no matter which med you are on. It's even debatable whether Remicade raises the risk in a Crohn's patient at all.

Here is an interesting Reddit discussion if you are interested: /www.reddit.com/r/CrohnsDisease/comments/1hp70k/remicade_related_lymphoma_questions/

It's up to you but I know I'd go on the Remicade >_>
Posted 8/4/2017 3:10 PM (GMT -5)
Thanks, nice cuppa! I will look at the Reddit.
Posted 8/4/2017 3:17 PM (GMT -5)
Hope it helps!
Posted 8/4/2017 3:33 PM (GMT -5)
Thanks again, nice cuppa. I've looked at the Reddit and its references...and still don't know how to figure this out.

Considering how much Remicade has been pushed in recent years, I'd hope for a more recent study than 2009. (It's the same study many have referred me to, including my doc.)

How would I even know if Remicade is working "better"?

What makes us think the risk is higher with 6-MP?

We'll see what others may have to say.
Posted 8/4/2017 3:42 PM (GMT -5)
There are more recent studies for other autoimmune conditions if you google Remicade and lymphoma.

I'm sorry, I'm afraid I just don't really understand the problem. Life is full of risks; out of all the things I have to worry about, getting an extraordinarily rare side-effect isn't one of them. Every time I drive I am running a much, much higher risk of death or serious injury than I am by taking 6MP (I used to be on Remicade but not any more). Yet people who are scared of medication presumably get into cars without a moment's hesitation.

If Remicade gets rid of your inflammation and 6MP doesn't, then it's working better. You might be able to tell from symptoms alone but you would need a colonoscopy to confirm it.

Post Edited (NiceCupOfTea) : 8/4/2017 2:47:13 PM (GMT-6)

Posted 8/4/2017 3:50 PM (GMT -5)
Certainly we all get quite nervous when we start looking at the potential side effects when considering a new medication. Words like lymphoma can scare us spitless as it is only human nature to assume the very case scenario and that it would happen to us. I was worried when first starting these medications, as most are. What helped me was comparing the risks versus the benefits. Let's start with the benefits, the odds of 6MP or Remicade improving your Crohn's symptoms are about 65-70 percent. Now let's look at the risks, the odds of getting lymphoma from these medications, very, very slim at less than 1 percent odds. But let's get a little more accurate. Let's look at the odds of the average, healthy person on the street (who doesn't take any medications) of getting lymphoma, it's 2 in 10,000 (or 0.02 percent odds). Second, let's look at a Crohn's patient on 6mp and their odds of getting lymphoma, it's 4 in 10,000 (or 0.04 percent) odds. Third, let's look at a Crohn's patient who's on both 6MP and Remicade's chance of getting a lymphoma it's 6 in 10,000 (or 0.06 percent odds). Now what happens if a Crohn's patient was to get that specific type of rare lymphoma associated with the warning label, the odds of getting that lymphoma into a remission are 66%. For the sake of comparison, what are the odds of death in a car crash within the USA: 1 in 133 odds, death due to heart complications is 1 in 5. So those are pretty long odds, and low probability. We hop into a car each day without worry, and we assume that ticker of ours is going to keep on ticking without worry. Somehow it is these darn immunomodulators and biologic medications that are scary despite the very, very long odds of something bad happening.

The Crohn's and Colitis Foundation of America is the source for these statistics:
Webcast: programs.rmei.com/CCFA139VL/presentation/player.html
Transcript: http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf
Posted 8/4/2017 4:01 PM (GMT -5)
Thanks for the numbers, iPoop. They help me to put things in context at least. I don't think people get a sense how low the actual odds are. Obviously if you're one of the 6 in 10,000 who get lymphoma then that's cold comfort, but the chances of you being one of those 6 are very low to begin with.

But the way some people speak, I get the impression that they think Remicade or 6MP increases their chances of getting cancer to 1 in 2, or something - like, they seem to think it's literally 50/50 instead of 6/10,000. It frustrates me and I do think a change of approach is needed. The drug information leaflets are useless (bored? Then read this article. It provides a very readable explanation as to why drug information leaflets are useless. It's for antidepressants but can easily be extrapolated to other types of medication).
Posted 8/4/2017 4:44 PM (GMT -5)
SG, I was on Remicade & Imuran for 3 1/2 yrs & never felt better. It was my saving grace believe me. I did my infusions every 4 weeks at 10mg, that worked the best for me. Sometimes the infusions have to tailored to the patient.I had a reaction on the 3rd infusion & was given IV Benadryl & Soluable Medrol prior to the future infusions. I had zero problems after that.

To be honest, if you read the potential side effects of Tylenol you would probably never take it again. Sure, it scares people with these medications, but the true stats are what you need to be looking at. Ask your dr questions, educate yourself about any medication. An example, I have a history of congestive heart failure, my dr was very much aware of this. There was a big warning about CHF, well the 2 people that died of CHF during the trials failed to tell the drs they had this condition. That is how CHF became listed as a potential side effect. During a trial if one person has an issue, it becomes listed as a potential side effect.

I was healthy while on Remicade & did not get sick with infections, colds, none of that. Actually, I had fewer sinus & upper respiratory infections those years I was on it. Yes, there is a chance the immune system can be lowered, but it does not happen to everyone. My advice is, be aware, however, do not drive your stress level through the roof thinking I have a sniffle it must be the Remicade causing it. That anxiety will drive you bonkers & takes so much out of a person. Be realistic & don't let yourself fall into that trap, its unhealthy. Yes, you mentioned hearing stories from other people, some people really like to do that, just talk to be heard. And they have not bothered to educate their self.

Take care.
Posted 8/4/2017 5:26 PM (GMT -5)
Thanks to all for your thoughts and perspective!
Posted 8/4/2017 6:00 PM (GMT -5)
Hi SG I agree with everyone on this and believe me I was terrified of these drugs to begin with. I am now on both 6mp and remicade though. I went through a lot before getting to that point but I found doctors I'm confident in to help me manage side effects and make sure nothing goes wrong. I'm not a fan of docs that completely brush off side effects because yes thought I 100% agree with the numbers mentioned above and the low risk, all you have to be is that one person.(and I've been that one person with a lot of things) I don't think that is enough to warrant not taking the medication though, as long as you have doctors willing to listen to you and address your concerns. remicade is very helpful and for me, more helpful than 6mp. I am currently only on a half dose of 6mp because of side effects but it theoretically keeps the remicade more effective. you could easily transition to both and then off the 6mp if it shows that the remicade has healed that area. it really isn't doing any good to have continued inflammation which can do more damage.

Post Edited (Labradorite) : 8/5/2017 10:22:17 AM (GMT-6)

Posted 8/4/2017 6:16 PM (GMT -5)
Thank you yeah
Posted 8/5/2017 10:50 AM (GMT -5)
Re what Straydog said. I was on Remicade for a year and on steroids for much of that time as well. I got one cold on Christmas Day, but that was it. People get an infection on Remicade and immediately link it to that, without being able to know for certain that it was the Remicade which caused it. The winter before last I wasn't on anything, and got cold sore after cold sore and a cold that went on for about 2 months. Last winter, I didn't get many cold sores, or a cold, but got several flare ups of uveitis - it might be connected to the 6MP or Entyvio, or it might not. I think I'm just run down, partly because of stress and anxiety, partly because of the continuing sh!t weather and not getting any sun, and partly because of the draining effects of Crohn's inflammation.

If your immune system was reduced to zero, you'd know all about it: as people with AIDS do unfortunately.
✚ New Topic ✚ Reply