What are side effects of Humira and Remicade?

[loriwithchrons]

So, Ive had Crohn's and colitis for 25 plus years, luckily, no surgeries yet. My GI Dr. has really been pushing Remicade and my friendly surgeon Dr. said if I were to try remicade it would change my life....the thing is....I can't get the GI to explain how it works...One of my previous GI Dr. told me the treatment cost $100,000 as if that were a reason I would want to try it....Im so frustrated as I have read the possible side effects and do not want to risk having a seizure or getting tuberculosis or lymphoma....to treat my Crohn's, knowing there is no cure....I can't seem to get a straight answer out of them about these two drugs...I have used prednisone to control the inflammation and about 13 years ago was told I have to stop because it was destroying my bones...medication induced osteoporosis....Recently the Remicade infusion nurse told me if I were to get Lymphoma that I would then be treated with chemotherapy....AS IF ALL I WANT TO DO IS BE MEDICATED....I DON'T... I have a hard time with the side effects... I am very sensitive and so far using diet and alternative I have managed to not have any surgeries...Although my stress level has been at an all time high these past few years...Im just stuck....frustrasted....sick as a dog...consumed by pain day and night...and I would like to hear from those that have used Remicade and or Humira for Crohn's and or Colitis, as I have both....
Anyone??? Side effects....benefits??? Thanks....

 

[FrozenGirl]

Welcome!
I would recommend posting under the Humira or Remicade forum for best response.
A TB test is usually done prior to ensure the don't active latent TB. Lymphoma has been seen in some anti tnf patients but it is a very small increase in risk and most doctors believe the dangers of untreated crohns/ UC is worse. I'm currently on Remicade and for me the potential benefits outweigh the small increase in risks.

 

[Chica]

Hi, I know several people, including myself, who have been on it for a while & it is quite simply life changing. As Frozen girl says, the benefits far outweigh the small risks. I also know a lovely chap who is high up in Pharmaceuticals who was involved in Remicade's development. He says it's one of the cleanest, most direct drugs out there & he'd recommend it to his own sister. Good luck : )

 

[alyssa519]

I am on remicade and it gave me my quality of life back. I've been on it for almost 1 year and look forward to my IVs every 6 weeks.

If you have good insurance, they will cover it. If you live in the US, there is also a program called remistart that helps cover the difference if your insurance does not cover the whole thing. They are great.

New studies are showing that those on biologics are not at a higher cancer risk

I have some fatigue right after my infusions (I am also premedicated with benedryl, so I'm sure that's mostly why.) I sometimes have pain in my legs for about 24 hours following the infusion, but that has been the worst of my side effects. Compared to what my disease was, I would choose remicade again and again

 

[ronroush7]

It is very rare but Remicade gave me folliculitis.

2

 

[Alley2231]

I've been through the introduction period and it has helped me tremendously! Outside of the normal fatigue from Crohn's and diet restrictions, I don't even feel like I have Crohn's Disease anymore (unless I introduce a new food and my body decides to not like it...but it has given me the confidence to start introducing foods back into my diet again!). Not that it's going to make you feel any better, Remicade is actually considered a type of chemotherapy. I do feel tired while getting the infusion, but then I'll get super hyper a few hours after. The day after my infusion I am tired and have joint and muscle pain. Being on Remicade also suppresses your immune system, so there are vaccines they require you to get (wasn't happy about that, I'm not a big vaccine fan, if it's not necessary), but luckily - knock on wood - I've been okay and I work in education with a bunch of germy kids! :tongue:

My infusion center charges my insurance a little over $7,000 per infusion, so I'm not quite sure where the $100,000 total came from, but I guess every place is different. I only have to pay a $20 co-pay. I would recommend trying it! I hope you and your doctor can come up with something that works for you!!:smile:

 

[kmblanco]

I just had my first remicade infusion this past Thursday. I experienced some fatigue but I can already feel like I am becoming healthier. To me putting and keeping my crohns in remission far outweigh the possible side effects. Good luck!

 

[Anny]

I've just started Humira (somewhat similar to Remicade) Friday June 20 and I woke up a brand new woman the next morning....! it is honestly the first time I use a prescription that has so few side effects and such a positive effect on me. The regular Crohn's meds usually give me nausea, vommiting, beak out in acne, bloating, upstet stomach, etc...
I was not walking up or down stairs in my own home because the arthritic pains were so bad. That's my first sign Crohn's is back. Did the 4 injection starter pack before bed and the next day I was shocked to have had a full night's sleep and to be rested, pain free and able to move about normally.
I even went shopping for new heels...!

Don't get scared of the possible long term side effects of this class of drugs. My own brother has been on it for the last 8 years (Psoriasis) and he has not had issues. None. No cancer, no TB, no rash, nothing. Healthy as any 53 years old man.

I've had numerous GI doctors over the last 35 years and each will have his/her own opinion about meds. Some are proactive and some are living in the dark ages. I personnaly will only deal now with the proactive kind as dark age kind of GI almost killed me on one occasion (almost had peritonitis from an about to burst abscess on a 98% blocked small bowel) The surgeon who operated on me got me a new GI specialist immediately after the surgery so I would get better treatement, he was appaled at my condition.

Anyways, just try it, wether Remicade or Humira. I have a friend who for the last 7 years was sick almost every other week with ulcerative colitis. She's now the picture of health after a couple of years on on Remicade, leading a very active and full life.

Good luck!

 

[IofNewt]

I started on Remicade in August and I am not feeling any better yet. I am only 2 treatments in and honestly, I feel worse than when I started. I am not blaming the Remicade for that, I just don't think it has started to work yet. I was told by the nurse that it can take 3 or 4 treatments before you notice a difference, so I am waiting.

Other than a wicked case of dry-mouth, I am not having side effects either.

 

[my little penguin]

Remicade takes all three infusions and then some to work for DS.
He is currently on humira ( he had allergic reactions to remicade - but he is a very allergic kid( food grass drugs etc)
No side effects works wonders on his crohn's
It just takes time to work-humira took longer close to 4-5 months.