Remicade discontinuance and GI "abandoning" me

How much are you getting every 8 weeks? 5/7.5/10 mg/kg?

I think your GI is right. You should speak to another professional before making the decision to stop remicade. there are not that many options left beyond biologics. Are you prepard to have surgery if supplements and diet fails?

MikeSoCal — I believe it was 7.5 mg. Although no matter the dose, the insurance will not approve the frequency or higher dosage. We've tried talking to them and now it's losing potency like I mentioned.

notsosicklygirl — unfortunately, regardless of whether i speak to another GI or not, remicade goes against my beliefs. after i began my journey of becoming a vegan/vegetarian, i cannot mix rat protein with my life force. it alters the dna too much in my opinion. i'm prepared to do whatever it takes to keep me healthy the proper way and not inject a foreign substance into my body. :/ :)

katmom — Hm, that's strange, My GI never told me that. Although, I'm not a necessarily serious cause. I have mild to moderate. I don't know exactly where it's located since I don't remember from the last scope. But it just so happens that my body rejects all medications after a certain point. I spoke to him about all of what you mentioned and he said my insurance just doesn't want to budge with it. I suppose it was all the hospital visits prior? IDK.


So for now I can say that I have been managing it. I feel like a majority of it healed as it is completely bearable and I still live a happy life. Even my flares are nothing compared to the original one. My infusion was on the 24th and typically I would feel like crap the week prior. But now I feel like my mind is clear and I feel better?

Post Edited (Katarzyna) : 3/6/2014 1:40:24 PM (GMT-7)

Honestly, I think that if that's how you feel regarding modern/Western medicine, it's probably best to cut ties with GIs (and probably most MDs) in general. I'm kind of surprised that in your first post, you still wanted them to give you advice.

Well if you really do not want to be on drugs, surgery is the way to go. I have been UC and drug free going on four years now. It's a good feeling. I had no problem taking the meds though.....they just didn't work.

You guys say serious UC but I felt like I was pressured into it for the hefty check the GI gets from it. My UC isn't that bad. He gave me this BS upside down pyramid discussion of how they start with the strongest first and work down to the weakest. It's almost like I have IBS tbh.

"you still wanted them to give you advice." Like blood work and things I cannot do on my own.

As for surgery, if it got there and I needed it, I would do it. Right now though, I have no pain just minor inflammation and bleeding that I'm controlling by my own means. The no pain is odd with what's happening but it's working right now.

also, my philosophy is complete opposite of yours ipoop. i feel that it's possible to achieve just as good of a feeling or remission from eating right. although the problem is, no one is really taught what that proper way is. for example to ncot's post about animal protein. doctor's swear by a certain amount of animal protein is needed but that number is double the true amount we need. it can also be achieved through plant proteins.

Post Edited (Katarzyna) : 3/6/2014 2:43:31 PM (GMT-7)

I've never heard of a GI dr starting with the big guns then working down. I would have run from that doctor to begin with.

Anyway, good luck with everything.

Katarzyna said...
You guys say serious UC but I felt like I was pressured into it for the hefty check the GI gets from it. My UC isn't that bad. He gave me this BS upside down pyramid discussion of how they start with the strongest first and work down to the weakest. It's almost like I have IBS tbh.

"you still wanted them to give you advice." Like blood work and things I cannot do on my own.

As for surgery, if it got there and I needed it, I would do it. Right now though, I have no pain just minor inflammation and bleeding that I'm controlling by my own means. The no pain is odd with what's happening but it's working right now.

I do not believe you can heal just on plant proteins when you have chronic autoimmune disease. I do believe diet can help.. but any ideologies impede success.

You can order tests on your own, but they will be more expensive. You can deduct them from taxes and your insurance deductibles, tho.

anyway, I support you in abandoning biologics if you feel you have very mild disease and all other options have not been addressed. (any blood is not mild to me) I have seen, in children, people doing the top down approach paired with aggressive treatment like: food intolerances, allergies, antibiotics.. and having more rapid healing. I never know if it is because children have such a strong immune system or the ped gis look harder for root cause so they finally find something instead of just medicating them.

I don't like taking drugs either but it's the only thing that has helped me manage my UC. If you're in the situation where your GI put you on remicade before trying the lesser drugs and you had mild UC without too much struggle getting into remission, I think you will be okay to try whatever you please. I thought because you were on Remicade that you had severe pancolitis and not mild symptoms that were overall manageable. It's surprising insurance would approve Remicade for mild UC without having tried other medications. I guess some plans aren't strict about approvals.

I have mild UC according to my GI but it's very difficult to get under control. Mild doesn't mean it responds well to treatments. Mild also doesn't seem consistent with symptoms. My inflammation appears mild but I will go to the bathroom 20x daily and throughout the nights with intense cramping, pain and blood.

PathogenKiller, I'm about 99.99% into remission. Yeah the bleeding is discouraging but I can deal with that unlike the cramps and what have you. So I do see your reasoning into getting into remission prior to quitting. I'll also look into those tests but I think I may stick with my insurance covering them 100% for now.

Stealth, yeah it's all good though. I'm very stubborn when it comes to drugs and surgery but I like opinions even the forceful ones. That is also what I was trying to point out. I have tried Asacol, Lialda, Apriso, Pentasa, Prednisone (it works, but darn, those side effects), Entocort (using it now with the supplements to control bleeding), and Remicade. All have eventually failed. I can see that Remicade is working it's way up to that so why risk my next infusion for it to be a dud?

I have checked the website out and luckily he isn't on there. Maybe he does get paid but it is hasn't been reported? But yes, I definitely think I can do this and if I can't, I suppose I can hope on the drug and surgery wagon again. I'm just omitting it for now as that is what has worked best for me.

notsosicklygirl, my UC is the same way but it seems it's only like this with medications. It could be genetics as no one in my family really took medication besides my father. It could be a lot of reasons really. Originally, my pains were so bad that I would wake up in tears. Now, I just do breathing exercises with my belly and it goes away almost instantly. There is only the downfall of the bleeding unfortunately. But it seems to be healing as I was bleeding more to the point I was becoming anemic.

I also have Horizon Blue Cross for NJ. /shrugs

soy, on the boat about it. it may be cornering but it doesn't feel like it to me. i just wish there were more success stories on here that didn't involve medication. :(

It's also ignorant to merely believe medication is the only way to receive remission but you don't see me belittling anyone. ;) But yes, I am and have been stating that in an indirect way. I am more self aware than most people and know what is good or bad for me.

Also Stealth, I found something in google but the page did not work so he MAY be paid by them since he is paid by another group:
"$1-1,000
paid by Allergan »
location: CLIFTON, N.J.
Payment for: Business meals Information
Payment for: Business mealsn"

Post Edited (Katarzyna) : 3/6/2014 3:52:33 PM (GMT-7)

I'm confused, you say Remicade is not working, yet you say you are in 99.99% remission.

Can you clarify how the Remicade is not working?