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#516937 - 04/19/17 03:41 PM I think the remicade is no longer working
wallwe Offline
General_AS_Kicker

Registered: 07/14/02
Posts: 2618
Loc: nova scotia canada
I know that I have not been here is a long while but there was a lot going on and none of it good. Mainly with my family which of course affected me. I don't know if it is because of this or not but the remicade seems to have stopped working. I get my infusion every four weeks and just received the latest 1 week ago. I was feeling bad before the infusion but I swear that I am feeling worse this week. Is it possible that after 5 years it has stopped working? If it has is there something else that I can go on?
_________________________
Take care Valerie

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#516939 - 04/20/17 05:25 AM Re: I think the remicade is no longer working [Re: wallwe]
Frederick Offline
Journeyman_AS_Kicker

Registered: 03/28/06
Posts: 115
There are at least a couple more Anti-TNFs that you could try. There is Enbrel (etanercept) and Humira (adalimumab). They are both administered by injection. The Enbrel as one injection a week and the Humira one every two weeks.

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#516943 - 04/20/17 01:10 PM Re: I think the remicade is no longer working [Re: wallwe]
wallwe Offline
General_AS_Kicker

Registered: 07/14/02
Posts: 2618
Loc: nova scotia canada
Thanks for the info.
_________________________
Take care Valerie

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#516962 - 04/21/17 11:35 PM Re: I think the remicade is no longer working [Re: wallwe]
Lon Offline
Very_Addicted_to_AS_Kickin

Registered: 09/11/01
Posts: 8329
Loc: Gillette, Wyoming
Well my dear friend from years gone by. I am concerned and if I can help you by listening, I would love to help you!

My remicade has not kicked in yet.

Br'er
Lon

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#516964 - 04/22/17 07:16 AM Re: I think the remicade is no longer working [Re: wallwe]
stevec Offline
Addicted_to_AS_Kickin

Registered: 09/05/01
Posts: 6222
Loc: Millstone NJ
Sorry to hear the Remicade may not be working. Hope that you find an alternate med that does
_________________________


L-R: Julianna, Jamie, Diane and Tonimarie

stevec-they also serve who stand and wait

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#516966 - 04/22/17 08:11 AM Re: I think the remicade is no longer working [Re: wallwe]
drone3 Offline
Member

Registered: 03/12/16
Posts: 25
Remicade stopped working for me after 6 months but them i discovered that certain foods were nullifying its effects. I had to go full NSD and not eat any form of sugar or alcohol. In combination with food management i started to take drops of food grade Hydrogen Peroxide 35% dilluted. This combination has seen the best results and the Remicade started working again. I'm pretty sure it all relates back to a massive bacterial dysbiosis but yeh i have no data only experience.
_________________________
1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA, AS?)
Taking - Infliximab, H2O2, Transdermal Magnesium
Diet - No Sugar/Dairy/Starch/Alcohol

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#516974 - 04/22/17 07:46 PM Re: I think the remicade is no longer working [Re: wallwe]
Dotyisle Offline


Registered: 03/07/02
Posts: 9381
Loc: Rosario, Argentina
Hope you find solution that works for you if remicade stops working.

If your family situation is causing a lot of stress, that could also be causing a flare. I have had flares in past due to stress.

Best to you

Tim
_________________________
AS may win some battles, but I will win the war.

KONK - Keep ON Kicking

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#516983 - 04/23/17 01:58 AM Re: I think the remicade is no longer working [Re: drone3]
jay_bharat Offline
Master_Sergeant_AS_Kicker

Registered: 12/08/08
Posts: 637
Loc: INDIA, Tamil Nadu
If remicade stopped working, generally it is due to antibodies. I have same problem. With NSD, I do not understand how remicade started working. Is it only due to NSD?. In fact, I am taking Exemptia (Humaria) now and been on NSD for eight months, but without any results. Can you elaborate, it may give some tips to me.

How many drops of food grade Hydrogen Peroxide 35% dillute you take per day and for how many days.

Jay


Edited by jay_bharat (04/23/17 02:09 AM)

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#517047 - 05/02/17 08:46 AM Re: I think the remicade is no longer working [Re: jay_bharat]
drone3 Offline
Member

Registered: 03/12/16
Posts: 25
Hi Jay, sorry for the delay.

To be clear its not just NSD. NSD is part of the puzzle, I have refined my diet over the last 3 years. Certain foods will trigger my AS, so i have to avoid starch,sugar (including all fruit),dairy,alcohol. Even with this diet management i could still flare in certain scenarios.

Hydrogen Peroxide 35% food grade was essential to get to the next level. It took me about 3 months to build up to 15 drops 3x/day. I actually think that 10 drops 3x/day was best for me as it just became way too strong. You have to go really slow until your body gets used to it. The H2O2 really does help and it kills only the bad bacteria and will give you extra energy.

So once i had reached this level of food management and H2O2 at 10 drops 3x/day i was cruising and could do a lot of things that i couldn't previously do (like walk more than 400m) I was probably a 3/10 pain wise, which was amazing in contrast to 8/10 previously.

After these changes i just went in for my regular 2 month Infusion, and pain levels became even less probably a 2/10 (very mild) But what i realised is that the Remicade doesn't allow me to eat the foods i have to avoid. I have to do all three food management, H2O2 and Remicade for the best results.

I hope this makes things clearer. Just to add that I believe the main goal is to actually heal the gut. If you heal the gut the AS will vanish. I'm not sure if this is possible for all of us but there is a guy Andy on these forums that has actually done it.
_________________________
1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA, AS?)
Taking - Infliximab, H2O2, Transdermal Magnesium
Diet - No Sugar/Dairy/Starch/Alcohol

Top
#517052 - 05/03/17 06:26 AM Re: I think the remicade is no longer working [Re: drone3]
jay_bharat Offline
Master_Sergeant_AS_Kicker

Registered: 12/08/08
Posts: 637
Loc: INDIA, Tamil Nadu
Hi drone3,

Thank you for your explanation.

Can you explain how you are consuming hydrogen peroxide and the brand you are using. On googling about hydrogen peroxide, i get mixed response, some cautioning about it's use others mentioning about the benefits.

When I searched in Kickas it gave Several names with Andy. I hope you are mentioning about AndyJ.

How is your mobility now. Are you able to walk longer distance.

Jay

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