My son's girlfriend has Crohn's, and her Dr. is suggesting either Remicade for treatment, or he's really leaning towards Humira (which I guess is still experimental for treatment of Crohn's). Both are extremely expensive, but after reading information on side effects of Remicade, they say it can't be taken long term as they don't know long term effects, and the Humira side effects sound pretty severe. Is anyone familiar with either of those treatments for Crohn's? Thanks!
Humira and Remacade are pretty intense drugs, usually used for the most severe crohn's. I have had crohns for about 4 years and I take pentasa, which is a mild moderate crohns drug...pentasa is in a family of drugs called mesalamines. Above that is milder immune suppresive drugs that try to calm the inflammation, like imetrex and a few others. If these don't work they move on to the heavier immunosuppressents, like Humira and Remacade. Usually, these are only used when the other drugs have not worked. Hope this helped...ask anything else is you need.
Thanks for the information. Her Dr. is supposedly the best one we have here in the City we live, but after I read the side effects of both Humira and Remicade, it scares me to see her go on either. But she hasn't responded to the other treatments, I guess. I'll have to ask her if she's tried the ones that you mentioned. The Humira would be approx. $2000/mo, and $3000/mo for the Remicade! That's ridiculous, but the side effects, and that the Humira is experimental, is the thing that scares me. Like I said, I'll ask her if she's tried the ones you mentioned. Thanks again for the response. I have IBS, but I sure don't envy you dealing with the Crohn's!
i have crohn's and been on remicade and its ability to put crohn's in
remission out way its side effects,been on it for about a year and i perfer
it over humira. i got good results after the second transfusion and my
treatment is every 12 weeks now and i am in remission. its expensive
but it works and surgery is the only other option.if you doctor is already
indicating these drugs the other will not work and the most critical thing is
to not let your condition continue for a long period of time, it will get worse
and you will end up having more complications.the expense it high but the
objective is worth it to me,hopefully i will keep me in total remission so i could avoid any surgery.
Thanks, Lodgen, for the info. I know she's already had about 1 1/2' of her intestine removed. For some reason, I know the Dr. is really leaning towards the Humira, so she is, too. From what I'd read, and I realize everybody reacts differently to medications and treatments, the Remacade sounded at least like more studies had been done on it, and that it had been used for treatment of Crohn's, and that Humira is experimental. You're definitely right in the fact that the cost is worth it if the results are positive. I'm happy that your Crohn's is in remission, and I will pass this information on to her! Prayers to you that yours stays in remission!
Hello! I recently joined and have read your messages. I thought my experiences and my future experiences would be helpful! I'm 35 and have had Crohn's since 2003. In June of 2005, it became 'active'. Since then i have been in the hospital 10 times, 1 major surgery for fistulas, abcess, and a little portion of diseased intestine removed in Nov of 2005. Also 2 or 3 'little surgeries' for fistulas and 1 surgery in August of 2006 to reverse the 'bag'. My most recent surgery was May of 2007, where I had to have a hernia repaired. My experience with drugs, well believe me it has been an experience. For example, Asacol did nothing for me. Imuran gave me pancreatitis. Prednisone helped with the pain but left me 40 pounds heavier because of my increased hunger. So I was put on Remicade in October of 2005 however after six LONG months on that I developed 'drug induced lupus' so I was real happy to get off that. Well, after that I was placed on Methotrexate (fall of 2006) which isn't really helping. I am also on Lomotil and Pentasa. Well, i am starting on Humira on Monday. So this drug will hopefully help me! I am interested in hearing about anybody's results, good or bad!
Almost the same story as Lisa. I have crohns disease went through all the drugs, Pentasa did nothing, Sulphasalazine made me sick, Azathprione gave me acute pancreatitis, Went on Remicade and i went into remission, fantastic then i developed Drug induced Lupus with full blown clinical disease, so i am not allowed to have it again. I am having weekly injections of methotrexate which makes me ill and am being referred to a proffesor as my consultant does not know what to do next, I forgot to mention due to other health problems i am not considered fit for surgery so my choices are limited. From various literature available Drug induced Lupus from Remicade is extremely rare although it could cause a flare in a person already predisposed to it, albeit dormant. regards stephney
I have read about HUmira, and it seems like less is known about it than Remicade.
I am starting on Remicade in two days. My doc says that I have Crohn's that is limited to the rectum and anus, and he says Remicade is particularly effective in that area. He also says it has become more of a first line treatment than it used to be. I was concerned about the possible side effects, such as lymphoma, but my doc advised that they are finding people with Crohn's are more susceptible to that anyway, and it may not be the Remicade that is causing it in studies where it was present.
BTW - I tried 6-MP for 6 weeks and noticed no improvement. I am on Pentasa, and I don't really see much benefit from that either. The only thing that has helped with the perineal problems seems to be Flagyl and Cipro, but my doc says that antibiotic treatments are dangerous if done over a long period of time.
Hi Everyone, I hope it is okay that I am joining your conversation. I think this is a really good forum and I have appreciated what you all have been sharing. I really was in particular touched by Lisa1701's entry about her treatment. I work for a communications firm, and our client is involved in Crohn's research and awareness. I've been trying to pass along to them what I feel Crohn's patients want most and what they need. So I have been reading the forums and attempting to gain perspective. But I really feel your opinions are more valid than mine. Is there anything you would want me to share with them?
Hello everyone! I have just started humira end of october 4 injections. Today i do my next two injections and then every other week. Right now im on pentasa 3 times a day, sol medrol dropped today to 8mg, and the shots of humira. The only side effect i got was being tired after the shots. But it could also be the drop on the steriod my body trying to adjust to it. This year i have been on and off predisone. I have the hardest time getting off i flare every time and get sick. Pentasa isnt strong enough to keep me in remission. I feel good right now i dont know if it still steriods or the shot.
I hope the new therapies work well for you. One thing that I only found out about Pentasa when my wife was trying for baby was that it is a folate antagonist. This means that it strips folate out of your body and you need to supplement it through diet (usually green leafy vegetables) and pills.
Basically, an average person needs 400 micro-grammes of folate a day whilst someone trying for a baby who is on Pentasa needs up to 2milligrammes i.e. 5 times more!
This will also apply to people who are not trying for a baby. They will need to increase their intake of folates. They should consult their health professional to get a recommended dose.
Folate is used by the body to synthesise amino-acids and DNA (the building blocks of the body). A deficiency can cause megaloblastic anaemia. The body uses folate to heal itself, therefore, it needs to be replaced if it is being "stripped out". An appropriate level in your body will likely contribute positiviely to your management of your condition.
Anyway, that's enough for now. I hope you find this information useful.