Remicade Not Working Anymore

Hello,

I am just looking for your thoughts and ideas about Remicade. I had an infusion in January and then in February I started flaring for the first time in 4 years. I lost bowel control and started having diarrhea. I have had no blood in my stools but some puss. Anyway my doctor told me that he thought is was just a bump in the road and wanted me to get the next 8 week infusion. Between that time he put me on Uceris which I took for 3 days or so, then I stopped because, it did not help and I started becoming ill a sore throat ect. I was/am so tired of getting sicker from the medicine that I have been taking for the UC. I then tried the GAPS diet and it did help for about 3 weeks. Then I underwent a lot of stress at work and I started flaring again. I ended up getting my next infusion which did not help. So now I am at a crossroads. I don't trust the Remicade and my doctor saying it is a bump in the road. I am tired of medication that does not work. I am also scared to completely stop the Remicade because I wonder what if it is helping me but just not at the level it was before because I am not going to the bathroom 40 times a day like before I started the Remicade 4 years ago and I am not bleeding nor do I have a lot of puss. I am trying to get into see another doctor. One who I feel might listen to me a little more. I also have Asacol but everytime I take it it seems to hurt my stomach worse. This whole time the thing that seems to have worked the best is the GAPS diet. I however, fell off the wagon because I was so hungry but I will be gettting back on. I'd like to start taking the Asacol again but it seems to cause worse diarrhea. I know I am being inconsistent I guess I feel like I can't trust anything. I am definitely considering surgery. I don't know if my insurance would even allow it anyway, but I guess it does not hurt to research it.

ks1905 said...
If your insurance company will pay for it then you can have your Remicade levels checked by a blood test through Prometheus Labs....the cost is $2,500 and my insurance company wouldn't cover it.

Promethus will appeal directly to your insurance company, and if you are denied, they only charge you $250.

Thank you for all of your replies.

Yes, ByeByeUC I guess it can't hurt to get a consult. I wonder how much time I'd have to take off work ect. Also with regard to the blood testing for the remicade.

Tornado6 and ks1905, I'm thinking based on what you posted about the blood test, that if I got my blood tested it could tell me whether the Remicade is working at all correct? Then I could stop the infusions knowing what I would be getting into, a worse flare or just the same.

Thanks for your help you've given me some things to look into.

ks1905,

Is Simponi, similar to Remicade? I checked out there website and it seems like it is except you inject yourself. Please post on how you are doing with it.

Hi garylouisville,

Well the last time I went to see my doctor he just gave me more meds and said the surgery would be worse than what I am going through now. From what I have read it sounds like I would have more bowel movements with a j pouch, unless I got pouchitis. However, I would at least have bowel control which would be good. My currect doc does not think outside the box. The docs that I am trying to see now do, from what I hear at least. So I guess I am hoping to hear alternative ideas to this surgery. The GAPS diet helped me for a while, so I'd like to think about maybe an alternative to the Asocal prescription or an understanding as to why it might be making me feel so sick and try to go from there. I like the idea that I can (if insurance permits) have my blood tested. If I am not running to the toilet 40 times per day and have no blood without any help from Remicade then that is good and I can maybe work with the rest of my issues via diet, and maybe some enemas and an asocal type alternative med (something not so extreme as remicade) I guess I am just looking into all my options. You seem to be doing well with lots of alternative meds. I would rather do that then have surgery.

mjw82704 said...
ks1905,

Is Simponi, similar to Remicade? I checked out there website and it seems like it is except you inject yourself. Please post on how you are doing with it.

I don't want to hijack this thread, I will post in the next few days my experience with Simponi...I only injected it 24 hours ago.

To answer your questions: it is a self-injection at home, the needle is the smallest needle that I've ever seen...right up there with Novocaine and Insulin injections; you don't even feel the injections. I am not sure how similar Simponi is to Remicade other then they are made by the same drug manufacture.

www.anserifx.com/how-it-works.aspx

Here's some info on the AnserIFX test. My doctor uses it to adjust my dosage. I had to do it twice because I had a three month gap in my infusions. They are still going back and forth with my insurance company, but it has been no work at all for me.

Tornado6,

Thanks for the link. I printed it and will take it in with me to see the doctor tomorrow. I am so happy. My hope is that I will hear something tomorrow to give me hope.

Melissa