How Good Is Remicade?

[rygon]

whats your experiences?

 

[moogie]

Right now I can't imagine my life without this Drug. Remicade realy changed my life.

My body accepts the drug wonderfully the little reactions I do get are insignificant compared to the goodness I have. I can now play with my three kids and we can go to the movies play hockey outside in the street. Ic an take them skating regularly. I could not do that before I was so in pain and tired all the time.

Remicade is dangerous but the goodness that copmesfrom it is way way way worth the risks.

That's my opinion

 

[Runner]

Have just gone on infliximab/remicade and immediately lost all pain. Simply amazing at the moment. Will have third infusion in 4 weeks time, experiencing tiny (thus far) side effects, but nothing that i would trade back for the pain relief!

 

[moogie]

Hey Runner, welcome to the club!!|

 

[CRAZYLEGS]

I had my second infussion a week ago and I feel great! I go for the third one at the end of the month and can hardly wait. What a difference it has made in my life, so far. I only hope that I continue to improve with no side effects. I can't believe that I'm actually thinking of going on a holiday! Good luck to all, from Crazylegs.

 

[hoons]

I have been on it for about 18 months now, and have had 1 flare up whilst on it (2 weeks before I was due an infusion). It works brilliantly for me, just a shame it is so expensive!

 

[Becky]

i have been on it for 4.5 yrs. It worked wonderful at first. I got it every 8 wks. After a few years I needed it more often so now I get it every 6 weeks. I also have to take 6mp. I still think it is a wonderful medication that has done wonders for me!

 

[kiny]

+ it's a very strong drug
+ it's long lasting
+ it can inhibit MAP by killing TNF-alpha

-it's a new drug, they don't know what it does with the body, at all, the discovery that it inhibits MAP is literlly hot off the presses, they seriously have no clue why infliximab works so well

-for some people it has been linked to side effects, infliximab has killed quite a few people, but as a percentage the number is really low. But as a percentage of medical drugs the percentage is high, infliximab was responsible for the most medical related drug deaths a few years ago I believe. Many of those happen when peoople go on infliximab and they create antibodies to the drug, they get the drug and the body reacts and they die if the drug isn't removed fast enough.

-some argue that infliximab could make crohn worse in the long run because of it's action on the immune system, the theory of many is crohn is an underresponsive immune system, and infliximab could make this worse (http://www.ncbi.nlm.nih.gov/pmc/articlerender.fcgi?tool=pmcentrez&artid=2092405, Borody asked himself this too in his videos)


I'm off the drug for almost a year now, and frankly I'm relieved. Maybe it's because I read so much about it, maybe it's because I know it's not a real solution, maybe it's because I can have an ease of mind that my body isn't on such a crazy strong drug anymore, but I'm happier now.

 

[David]

Kiny, can you please source the death rate data? Thank you.

 

[kiny]

Kiny, can you please source the death rate data? Thank you.

http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100198254&page=2

If you want to account for the pain killers or not is a personal call I guess, since some people put those deaths into "abuse", because it's usually an overdose.

If you don't account for them then Infliximab (remicade) is top 2 deadliest drugs.

I was really upset when I found this out, partly the reason why I stopped using it. And I'm not telling anyone to stop using anything or do anything, even with the high rates, it's still relatively small when put into context.

However, I think it's damn time that we get other medication, and fast, because crohn really really needs to get more media attention and better and safer drugs need to come out.

I hear the senate in the US made a crohn (IBS in general I believe) awareness week last week, I hope they increase funding also. (well apparently it existed since 2011, so at least they're doing something)

 

[rygon]

The problem with the study is that it doesnt say how many peple take it, and what the % death rate is. It doesnt tell you the reasons for death either, and being 7yrs old it may still not be true

 

[Rebecca85]

I found a link which looked at a few deaths which occurred on infliximab and other anti-TNF drugs during clinical trials for rheumatoid arthritis. Basically the deaths occurred because of infections, rather than a direct effect of the drug, and were in elderly people. These deaths happened almost 10 years ago, I am not sure what kind of screening for existing infections they had then. http://rheumatology.oxfordjournals.o.../43/4/522.full

Another link I found was an analysis of 100,000 patients on infliximab vs 100,000 patients on standard drugs, over 1 year. The infliximab group had 12,000 more patients in remission, 4,000 less surgeries and 35 less flare-related deaths. The quality of life score was better for the infliximab group than control. The 'cost' of this was 200 drug related deaths, and 200 cases of lymphoma. http://www.ncbi.nlm.nih.gov/pubmed/16843733

 

[CRAZYLEGS]

I have not been able to access my computer for quite a while and so have not been able to read your messages till now. I do thank you all so much for your input and look forward to hearing from you in the future. I had my 3rd infussion 2 weeks ago and am doing fairly well. I still have some of the old syptoms. Gas and liquid mucous among them. I really hope that after a couple more infussions, I start feeling more normal. Do any of you have any info as to how long it took for you to feel fairly normal?Thanks in advance for any help that you can give me. Till then, Crazylegs.

 

[chrisjz]

I have been on infliximab for almost a year now and to be honest its the best thing ever and has given me back my life. Before infliximab I had 3 years of hell with severe pain, tiredness, and needing the bathroom upto 15x a day. But not anymore since getting infliximab - my life is back to normal and for the most part its so normal, I forget that I even have Crohns. And that is saying something considering just how bad I was before infliximab. I get treatment every 8 weeks and the IBD team at my hospital are just amazing!

 

[kllyeve]

You could pretty much tell me it is some sort of "arsenic loaded alien made poison" at this point AND I WOULD STILL continue to take it because it has put me into remission. For the first time in almost 3 years I am pain free with the intestines actually working.

If the price for quality of life now, is the slight risk that I would have a shorter life, I'll gladly pay that price rather than spend more years in pain and unable to do anything.

I understand how this medicine can freak people out and if someone doesn't want to take it because of that I totally get it - took my GI 2 months to convince me to start.

 

[CRAZYLEGS]

Thanks for the reply. How many infussions did it take before most of your symptoms stopped? Can any of you give me an answer? I've had my third, but I still have quite a few of my symptoms! Any info is greatly appreciated. I'm wondering if there is still hope for me getting this under control! Thanks in advance, from Crazylegs

 

[chrisjz]

I began to notice the difference within a few days of the first infusion but in terms of how quick it cleared pretty much all of the symptoms it was probably around 2-3 months, but I guess everyone is different, some quicker, some longer.

 

[KWalker]

I wish I could remember exactly how I was on Remicade but it's been a long time now so I can't. From doctors notes and what I've been told it was working really well for me, but I also know I was switched to Humira afterwards, and then Methotrexate after that. Could it's affect somehow wore off? Or maybe the doctor didn't want to keep me on it long term because of the side effects. I should try to ask sometime. From what I can recall I don't remember any negative effects though. That's kind of scary about the stats posted though. I don't think I was even on it long enough to do any damage (later on in life) anyways.

 

[Pipergirl]

It has been an absolute miracle!! a few weeks after my first go it was okaayyy, but now with my 4th infusion(i believe) i feel normal! no constant worries about restrooms or having to wake up early just to feel absolutely horrible in the bathroom every morning. It is fantastic!

 

[sfmreb2]

10 years on Remicade. Still doing good.

 

[tots]

I thought Remicade had been around for awhile. I called the makers of Humira 2 weeks ago- their sucsess for Crohns remission 36%- Remicade 81%. (From the makers of Remicade) I don't know about you
but I am so very tired of pain- cramping- diarrhea- gas- bloating- fatigue- not being able to count on my body at work or being a mom at 100% for my kids!

A few years ago I was given 4 inches of paperwork to sign so the Dr could repair my 17 yr old sons back. He had a burst fracture of the L1 ( try explaing what that means to your 17 yr old son bowel,bladder and sexual function). He also had a tramatic brain injury. They had to deflate 1 lung and the surg was 8 hours long. Sometimes like then we have to have a little faith. I am not one to see the world through rose colored glasses- but, I have learned not to read ALL the fine print.

I am just very tired of being sick. I want to eat a salad- have oatmeal or even a simple bowl of cherrios with fresh fruit.

I also know how fast it can turn- the damage thats happening to our insides wven if we cant feel it or see it.

We just do the best we can!


Lauren

 

[UsernameForDummies]

Ten years ago I started on Remicade and within a week I was pain free and had finally gained three kilos in weight. It was a miracle and I thought I've found the Holy Grail. During my 6th infusion (only minutes after starting the drip) I had an anaphylactic shock - I really tought I'll die. A few weeks later my doctors tried again with some other medication administered before. Still, a few minutes later I had my second anaphylactic shock.

Bottom line is, when Remicade worked it was unbelievable and I felt like I was handed a second chance on a normal life, but when it went wrong I nearly lost my life.

I'd still advise anyone to try it - with an emergency plan in place.

 

[rh4021]

I had about 4 or 5 infusions before I began to have allergic reaction as well. Broke out in hives head to toe. It was awful. Dr said next infusion could have killed me. I lived on steroids and Benadryl for weeks after that. It was awful. I was researching issues with remicade and if you Google remicade lawsuits you will be blown away with the stories people have posted. Incredibly scary. Just be cautious on this med.

 

[49erlady]

I was dx in Feb with Crohns. They put me on 40 mg Prednison. When that wasn't working they kept me on 15 mg of Pred and started me on Remicade infusions. I feel a lot better. I have more energy and sleep better. My pain has decreased dramatically. What I'm concerned about is I have more bleeding in the last couple weeks than I ever have. That's not to say the bleeding is a lot because it's not. Prior to this I only had a handful of times I had a small amount of blood in my stools. This last week, which was 1 week prior to my 3rd infusion, I had bleeding every day. I'm now scheduled to go 8 weeks before my next infusion. My doctor said he could increase it to 6 weeks if my symptoms persist or I have the option of adding Imuran or 6mp to my treatment. He said there is a higher chance of cancer by adding these.

Anyone have any imput for me, as in do I just need to be a little more patient with the Remicade? Is this normal to start? Really don't want to add more meds if I don't need to.

 

[CRAZYLEGS]

Hello 49erlady, I can't be sure as to your question about giving the Remicade more time because I've had 5 infussions up to this date myself and my condition is still not completely under control. The Remicade has definately helped, but not to the extent that I was hoping. I saw my Dr. this week and he is going to increase my dosage for a final try and if that does'nt do the trick, then I'm afraid its a Colectomy for me. I will say that you should be very careful when adding more drugs, particularly, Imuran. Be sure and have your blood monitored frequently. I was put on Imuran and although it did help my condition and relieved quite a few of my symptoms, the Imuran stopped my bone marrow from making blood and I spent 10 days in the hospital! At first they thought I had Lukemia, but when the Emegency Room Dr. found out that I was on Imuran, he quickly realized what the problem was. Thankfully, they found the problem early enough. I wish you all the best and hope that things work out for you. Don't be afraid to ask questions of your Dr. CRAZYLEGS

 

[Hannahsmall87]

Hi all, I have been on Remicade for 8 months and it's a miracle cure. For those that are having a hard time
With expenses, please check out the Remistart rebate program. I promise I'm not an employee of theirs or advertising anything bad, but the program has helped me so much. My insurance doesn't cover 30% of infusions, and the Janssen Biotech rebate program covers that 30%. Please look into the program there is a lot of information online and it has been accepted and verified by my hospital. The rebate program recently paid 1,297 dollars towards my bill. We owe 0$. It's incredible. I am a patient not an employee and I'm not doing this to advertise for them, I really want to help anyone I can find financial means to pay for Remicade. It's called remistart by Janssen biotech which is a pharemeutical company.

 

[FrozenGirl]

I said okay but really I love it. It doesn't completely relieve all my symptoms and I still have episodes but it has given such a quality of life increase. I can function now whereas before I spent all my time at work trying to convince myself to not go to Emerg, in summary love remicade even though it isn't 100% for me.

 

[Polaris]

It worked really well when I first started it, I felt great. But shortly after, I think about 4 infusions in, I built up antibodies

 

[Teacrumb]

Miracle drug. I felt like it brought me back from the grave. I looked forward to my infusions because my nurse was cool and we just hung out and ate snacks and watched chick flicks. Also, I got to leave work early. But it doesn't last forever. Usually 2-4 years at the most I hear. It started losing its effectiveness after about 2 for me.

edit: I forgot about remistart. If you have insurance with a high deductible, you will probably qualify for a rebate that will cover you through your deductible.

 

[CRAZYLEGS]

Its been almost 3 years since I have posted on this site but just to bring things up to date: I finally had to get a colectomy after trying with limited success with many different drugs and treatments. I must say that I had the Ileostomy in Oct. 2012 and now wish that I had done it 3 years prior to that! I can't believe what a wonderful change, having that operation has made in my life. Sure, its a little inconvienient at times, but there is no pain, no running to the bathrooms, none of that. I travel where and when I want withouthaving to know where the next washroom is. If anyone on this site has any questions, please don't hesitate to ask. I will definately try and asnswer. CRAZYLEGS:

 

[DJBHeat]

Complete lifesaver for me!