Remicade

i don't really know about the side effects to be honest. i've been taking it since late march and until my last infusion it worked great.

what side effects are concerning to you?

Munchkindd, I recommend you give "Balancing the Risks and benefits of Treatment for Inflammatory Bowel Disease" by the Crohn's and Colitis Foundation of America a read:

http://www.ccfa.org/assets/pdfs/risk-and-benefits-transcript.pdf

Slide 21: Main Side Effects of Anti-TNF Treatment
So going to malignancy first. And, again, I think these are the most concerning to both patients and providers and families when you think about starting a medication that might actually cause cancer, which is a scary thing to think about. But to remind you of the baseline risk, meaning those people walking around on no medications at all of non-Hodgkin’s lymphomas, about 2 people out of 10,000 (or 0.02%). On the immunomodulators, it’s about 4 people out of 10,000 (or 0.04%), as I mentioned a few slides ago. If you’re using anti-TNF medications along with immunomodulators, although the risk is a little bit higher, it’s still about 6 people out of 10,000 (or 0.06%). So, again, the new story would be a triple risk from 2 to 6, but still a very, very small number.

Slide 37: Putting Risk in Perspective
We also need to put this in perspective, that just being alive and walking around the planet, we have risks of bad things from happening to us. Although very few of us have either been struck by lightning or know somebody who’s been struck by lightning, it happens. But look at these numbers for other things that we do every day. The chance of dying over your lifetime from a biking accident is 1 per 5,000; drowning, 1 per 1,000. And believe it or not, in the US, the chance of dying in a car accident is about 1 out of 260. The chance of dying from cancer is 1 out of 8, and the chance of dying for heart disease is 1 out of 5. Now, remember this isn’t patients with Crohn’s disease. This is people in general. So when we’re talking about side effects of medications on the order of 1 per 10,000, 6 per 10,000, we’re taking extremely small risks to help make you feel so much better and get the quality of life back to where it should be.

Thanks, I will check it out. The internet can give you alot of information, sometimes too much. Good luck Michelle, when are you starting Remicade?

Never go to Dr. Google to read about possible complications. It can scare you badly lol :)

I've been on Remi now almost 2 years. No issue yet. Though I did have a glitch after my 3rd infusion. It made my hands swell up and it was extremely painful. But now I premedicate with Benedryl and Solumedrol and I've not had that reaction since. The only side effect I get now is some nausea, mild stomach pain and leg cramps the day of the infusion. But I found that by drinking lots of fluids during the infusion as well as eating tends to make these side effects not so bad.

I've been on Remi since March 2006 and still in remission. I have had no side effects other than mild tiredness the day of the infusion, but was always able to return to work if I had my infusion in the morning.

I've been on Remi (and 6MP) since early March of this year. It's been awesome--together with hydrocortisone enemas, I'm in symptomatic remission after a very long flare.

The only side effect I've had so far is that I'm very tired for a week after each infusion. However, I didn't have that side effect until we upped my dosage and frequency.

The possible side effects are pretty serious, but they're also VERY rare. In contrast, pred side effects are serious and very common. I'd take immunosuppressants any day over pred!

(Also, hi, neighbor! I'm in Boston!)

I was on it for six years and it worked great but over time seemed to become less effective. Switched to humira then cimzia before discovering how to overcome my illness with just natural farm fresh non gmo foods and removing the toxic chemicals from my daily use products.
The worts part of all of the above medications were the insane headaches they caused.

My daughter had 4 1/2 good years on Remicade. Few side effects from the infusion and a colon that functioned very well. Several serious infections over time, and now it seems to be losing effectiveness. Same as you, jac51584.Awaiting an antibody test to see if she needs an increased dose, or a switch to another biological. Fingers crossed. I would try the other classes of drugs first, and this last. Options are limited.

5-ASA's are newer topical anti-inflammatories for the GI system. Mesalamine and Balsalazide are the most commonly used for UC; Pentasa is sometimes used but is more specific for Crohn's disease. Mesalamine also comes in newer time-release form, Lialda being one brand name for this product.

The most common immune suppressing drugs are Imuran and 6-MP, which are closely related. These carry their own risk of lymphoma; indeed, many if not most of the cases associated with Remicade occurred in people who were also on one of the immunosuppressants. These have typically been the second line of treatment for at least the past 20 years.

The "biologic" drugs are those that suppress one particular component of the immune system, referred to as TNF. The most common ones used for UC are Remicade and Humira. There are a number of others used for other autoimmune diseases, such as rheumatoid arthritis and psoriasis. Both Humira and Remi have a very small statistical risk for lymphoma, and a small number of people develop other serious side effects. Many gastroenterologists are now using the biologics as their second line of treatment, as they feel they are more effective and less likely to cause serious side effects than the drugs that suppress the general immune system.

I'm glad to see you're on rectal meds; these can make a big difference in getting that final step to full remission. And it's common for people to see what look like complete Asacol tablets in their stools. Asacol has a thick waxy coating to prevent it from dissolving in the stomach or small intestine. Often this coating will pass pretty much intact even though the medication inside has dispersed in the colon and done its job.

Hope this helps. It's a lot of information all at once, I know.

Just got back from the Rear Admiral's office, feeling a little better than before. She said my most recent lab work looked a little better, so between that and how I have been doing with the mesalamine enemas, for right now I can stay on the mesalamine enemas every other night and I am going to be very vigilent about taking 6 azaulfadine tabs each day. If things get worse she would like to start me on 6mp which she said usually takes around 3 months to start working and she would use cortenemas to help get me through til the 6 mp starts working. She ordered new lab work for the genetic testing to see if I am a candidate for the 6mp (something to do with enzymes being able to break down the 6mp) that way if the need arises we won't have to wait for the test results to come back.

Yes what a big relief. Have been taking folic acid all along with the sulfasalazine. Rest? what's that? lol.........not in my genes.....although this week is vacation, so enjoying it....

ive been on remi since and 6 mp since april and so far no side effects at all. i feel tired alot but i think thats from running around after my toddler lol. i was scared at first too but i could not get this flare under control and i had a hard time stopping pred. remi got me off the pred and ive been off of it since 03 of june. ive seen a bit of blood since but ive taken pentassa and its gone away. i hope it works for a long time caue myt next stop is surgery. i never knew that pregnancy would of made my UC so much worse.