Remicade Survey

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Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 4/10/2016 9:12 PM (GMT -6)   
I would like to take an informal survey and ask the following of my fellow RA sufferers:

1. For those on remicade, how long have you been on it?

2. Does it work as well for you now as it did when you first started?

3. If not, have you added any new medications, switched to something else, increased the remicade dosage, or just living with the extra pain?

I'm asking because I've been on remicade for 11 years and while it still seems to be working, it's not as effective as it used to be. I have more stiffness in my knees/legs and generally feel weaker. My appointment with my doctor isn't until June (that is, if he doesn't reschedule like he often does) so I am trying to figure some things out on my own. Thanks for any feedback you can share!
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use Bentyl, peppermint oil capsules and Gas-X which all help with various UC symptoms during a flare.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

TONY BOSCO
New Member


Date Joined Feb 2016
Total Posts : 9
   Posted 4/26/2016 3:40 PM (GMT -6)   
Iv Remicade was pretty good fo r me . I was on it for about 5 yrs or so ... but co-pay went to 260.00 I would go to the hospital and spend like 5 to 6 hours there every 2 or so months... looking into xeljanz now but I might have some issues cause of the side effects and all my other problems........ tony

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 4/26/2016 9:06 PM (GMT -6)   
Tony,
Thanks for your reply. Wow, $260 is a high co-pay. I hope Xelganz works for you. Have you considered Enbrel? I used that for many years and it worked very well with no side effects. The only negative for me was that I had to give myself the injection twice a week.

TONY BOSCO
New Member


Date Joined Feb 2016
Total Posts : 9
   Posted 4/27/2016 8:05 AM (GMT -6)   
Thanks...... I tried enbrel too but I use to pass out after injection LOL........ I also started with a omega 3 fish oil pill and believe it or not after about 3 months or so I started to feel less pain less often........ seems to help with the inflammation also..........T.

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2066
   Posted 4/27/2016 11:45 PM (GMT -6)   
Hi Alice,
I am in exactly same boat. My Humira quit being as effective after 5 yrs, and now the enbril seems to be not doing as much after another 5 yrs. My appt is Sept. 30 th! I just saw my nurse practitioner, and she is going to try to call my rheumy and see if going back on Humira is an option. I will keep you posted. Maybe you could go back to Enbril???
Beth

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 4/28/2016 7:35 PM (GMT -6)   
Hi Beth,

I would go back on Enbrel if I could but now I also have ulcerative colitis and need to be on a drug that treats both diseases so my options are limited. If they all become less effective over time what will happen to us? I hate the thought of being in a wheelchair in 10 years. I guess we can keep switching to other drugs and see if they are more effective. I took a Vectra blood test that shows the level of disease activity and if I'm reading it correctly my disease activity is "moderate." According to my rheumatologist that is the best test for measuring RA disease activity. I would ask for that test if you haven't had it yet. Can you try remicade? It seems to work best in the beginning so maybe it would help you.
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use Bentyl, peppermint oil capsules and Gas-X which all help with various UC symptoms during a flare.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2066
   Posted 4/30/2016 11:11 AM (GMT -6)   
Hi Alice,
I have never heard of a Vectra test. I will certainly ask about it. Thank you! I have been so grateful for the ability to get biologics to control my RA. Like you, I fear that they will become less effective over time. I want to retry humira for that reason. Maybe we can go back and forth when one wears off. I am avoiding remicade because I don't want to have to go in for infusion. I'll likely just go with rheumies recommendations.
I will definitely ask about the Vectra though! yeah
Beth

Alice22
Veteran Member


Date Joined Jul 2015
Total Posts : 595
   Posted 4/30/2016 12:14 PM (GMT -6)   
Beth,

Just want to mention that in the past the Vectra test was very expensive and not all insurance covered it. I mentioned this to my doctor when he stopped into the infusion room to talk to me about blood tests last month. I told him my new insurance didn't cover the Vectra test and I didn't want it because it was too expensive, and he said the price came way down and it shouldn't be more than $25.00. The nurse chimed in and agreed with that. There are several articles about it online if you're interested. Good luck!
Diagnosed with ulcerative colitis in 2005 and rheumatoid arthritis in 1998. On Remicade since 2005 for both diseases. For UC tried sulfasalazine, Lialda, colazal and others which made me ill. Started 50 mg. Imuran July 2015. Use Bentyl, peppermint oil capsules and Gas-X which all help with various UC symptoms during a flare.

Caregiver for mother with Alzheimer's Disease (for Alz. forum).

celebrate life
Veteran Member


Date Joined Dec 2014
Total Posts : 2066
   Posted 5/2/2016 9:17 AM (GMT -6)   
I'm very interested! Thank you again, Alice. I appreciate the information very much.
Beth
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