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#278972 - 09/11/17 06:00 PM stopping remicade or not
KayF Offline
Registered Visitor

Registered: 07/11/16
Posts: 74
Loc: Florida
Hello everyone! It has been awhile since I posted. I would like some opinions from those who know. I have been taking Remicade every 6 weeks infusion have been at 700 mg the past two infusions. have had to go up everytime almost since I started a year ago. I have had a few good weeks in between infusions but none that have asted until the next one. I feel like crap around two weeks or so before I am due for next one and have had one month with no difference in symptoms actualy felt worse. I have also been taking methotrexate once a week 4 pils . i take celebrex 200mg tramadol 50mg 2 times a day cymbalta 30mg once a day and norco as needed 10's I take half at a time and that usually adds up to one a day lately / I cant get through the pain in my lower back and ribs.my rheumy is awesome. he sais I still have some room but not much to go up and I can come every 4 weeks maybe. I honestly wonder if that will make a difference. I just had my infusion two weeks ago and I am not doing well. I have been having bad headaches from it the last time and this one and my hips low back mid back ribs right shoulder blade hands and feet are hurting constantly. it doesnt feel as good as it even did last month and the month before was the month nothing worked. I am very tired and very discouraged. i did talk to a gentlemen in his 70's with AS who told me he was bed ridden and ended up taking humira and it worked the first time for him and all he taes is some over the counter nsaids for days when he hurt but he said for the most part it has been years since he has felt the back pain he is in remission now I gues has had it 34 yrs retired disability from service. Anyway I am 44 and I cant get the pain under control with anything for long and i take so much more medicine. I wonder if it is just time to try something different. what yall think?

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#278974 - 09/12/17 07:18 AM Re: stopping remicade or not [Re: KayF]
Ken Delano Offline
Registered Visitor

Registered: 05/26/04
Posts: 1516
Loc: Minnesota
Not that I am an expert on this subject.........but

Enbrel seems to work the best for AS followed by Humira. Prior to Enbrel I was in agony most nights. This was prior to 2003. Enbrel gave me a new lease on life. I still had to retire on disability at age 44 but in my case that turned out to be for the best. I would suggest that you talk to your Dr about changing to another TNF. A year is more than long enough to find out if the med is working for you or not.
_________________________
AS/PsA DX in 1988

Retired on disability
in 2005 at age 44

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#278977 - 09/12/17 11:28 AM Re: stopping remicade or not [Re: KayF]
KayF Offline
Registered Visitor

Registered: 07/11/16
Posts: 74
Loc: Florida
Thanks I am going to of course go over how I feel again with my doc and see what makes the most sense. I dont really think it is working for me either. It has dimished a lot of the stiffness I was having before treated but not enough of the pain and mud feeling I have in my back.Talking to the older gentlemen about his success with just Humira made me think it is time to do something different instead of waiting for more reults with this stuff.the rheumatologist I see is very good and listens. So I dont think there will be an issue. we always talk it out and discuss the pros and cons. Ready to see him today but it will be another two weeks.I really want to work a lot longer I just got my first two years in as a RN on a critical care floor.late bloomer. AS kicked in the las semester I was in school. wasnt good.

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#278980 - 09/12/17 11:04 PM Re: stopping remicade or not [Re: KayF]
WhiteCell Offline
Registered Visitor

Registered: 05/31/10
Posts: 1297
Loc: Whidbey Island WA
I would consider a change. Remicade worked for me immediately. Perhaps Humira or Enbrel will for you. It sound like you have not been successful on the medication.
_________________________
Since 18 years old - began as Reiter's Syndrome. Diagnosed with Ank Spon 2001. Remicade since 2002 - 5mg/kg every 7 weeks. 8 hour Tylenol and hot tubs for pain.

Severe Right Eye Glaucoma-
Trabeculectomy/lens replacement 2006.
DSEK Cornea Transplant October, 2009.
Ahmed Shunt June, 2016.
DSEK Cornea Transplant, November, 2016.

Supra Ventricular Tachycardia. 2004.
Cured by RF ablation 2006.
Cardizem 240 CD.

ICU RN Seattle, WA

~Grasp The Challenge and Succeed~

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#278982 - 09/13/17 01:37 AM Re: stopping remicade or not [Re: KayF]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 105
Originally Posted By: KayF
Hello everyone! It has been awhile since I posted. I would like some opinions from those who know. I have been taking Remicade every 6 weeks infusion have been at 700 mg the past two infusions. have had to go up everytime almost since I started a year ago. I have had a few good weeks in between infusions but none that have asted until the next one. I feel like crap around two weeks or so before I am due for next one and have had one month with no difference in symptoms actualy felt worse. I have also been taking methotrexate once a week 4 pils . i take celebrex 200mg tramadol 50mg 2 times a day cymbalta 30mg once a day and norco as needed 10's I take half at a time and that usually adds up to one a day lately / I cant get through the pain in my lower back and ribs.my rheumy is awesome. he sais I still have some room but not much to go up and I can come every 4 weeks maybe. I honestly wonder if that will make a difference. I just had my infusion two weeks ago and I am not doing well. I have been having bad headaches from it the last time and this one and my hips low back mid back ribs right shoulder blade hands and feet are hurting constantly. it doesnt feel as good as it even did last month and the month before was the month nothing worked. I am very tired and very discouraged. i did talk to a gentlemen in his 70's with AS who told me he was bed ridden and ended up taking humira and it worked the first time for him and all he taes is some over the counter nsaids for days when he hurt but he said for the most part it has been years since he has felt the back pain he is in remission now I gues has had it 34 yrs retired disability from service. Anyway I am 44 and I cant get the pain under control with anything for long and i take so much more medicine. I wonder if it is just time to try something different. what yall think?
if it has been a year I would suggest talking to your doctor and telling him you are having no improvement and would like to try something else ,in the mean time ask your doc if you can discontinue tramadol and try the Norco for all around clock pain I remember hydrocodone helping my back well a while ago however the tyenol messes with my stomach and liver enzymes.
_________________________
Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed

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#278984 - 09/13/17 05:21 AM Re: stopping remicade or not [Re: KayF]
KayF Offline
Registered Visitor

Registered: 07/11/16
Posts: 74
Loc: Florida
Thank you everyone for the feedback. yes , I do believe it is time for a change. I am up late now , which is not unusual. My day however was bad. Tired , lots of spinal pain. ended up sleeping it away which I did not want to do. Remicade is definately not gving me the results I had hoped for. Feel confident I will make a change next time I see doctor. It will only be to wait on insurance to approve it and start something new. I am thinking the Humira might be aa good one to try next.
Hope you all are finding relief and rest as wel.

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#278985 - 09/13/17 05:32 AM Re: stopping remicade or not [Re: Thesnakejakw]
KayF Offline
Registered Visitor

Registered: 07/11/16
Posts: 74
Loc: Florida
Funny you mentioned that about the Norco. I actually have been thinking the same thing. I have taken both for years. tramadol was the first one my practitioner put me on for constant tailbone pain and fibromyalgia. I thought it was great because I had dealt with tailbone bain forever. Even as a teenager. I actually had taken my husbands I hurt so bad and found it relieved the pain within lke thirty minutes. I was in awe. I had never taken more than a tyenol for any thing and I actually have had pain off and on as far back as being a child . I never thought much of it untill I hit my thirties and nw my 40's and I am becoming unable to function because of it. kinda like a frog in gradually boiling water.lol Anyway although diagnosis was wrong the tramadol worked and when I started pain management and my pain had ncreased they put me on Norco also. so I usually take tramadol two to three times a day and a half a tab in between if I need it. I need it more than not lately. I feel also that it is controling the pain better than the tramadol. I am just so used to taking the tramadol I hate to mess it up if it is working at all. You see, to me this is all a lot of medicine to be on remicade also. I would have thought by now I woudnt need the extra pain medication.

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#278989 - 09/13/17 08:15 AM Re: stopping remicade or not [Re: KayF]
Thesnakejakw Offline
Registered Visitor

Registered: 06/10/17
Posts: 105
Originally Posted By: KayF
Funny you mentioned that about the Norco. I actually have been thinking the same thing. I have taken both for years. tramadol was the first one my practitioner put me on for constant tailbone pain and fibromyalgia. I thought it was great because I had dealt with tailbone bain forever. Even as a teenager. I actually had taken my husbands I hurt so bad and found it relieved the pain within lke thirty minutes. I was in awe. I had never taken more than a tyenol for any thing and I actually have had pain off and on as far back as being a child . I never thought much of it untill I hit my thirties and nw my 40's and I am becoming unable to function because of it. kinda like a frog in gradually boiling water.lol Anyway although diagnosis was wrong the tramadol worked and when I started pain management and my pain had ncreased they put me on Norco also. so I usually take tramadol two to three times a day and a half a tab in between if I need it. I need it more than not lately. I feel also that it is controling the pain better than the tramadol. I am just so used to taking the tramadol I hate to mess it up if it is working at all. You see, to me this is all a lot of medicine to be on remicade also. I would have thought by now I woudnt need the extra pain medication.
well if simply adjusting so instead of the tramadol, you can try the Norco for a week or two if your doctor gives you permission then you can decide if your pain is more controlled , I don't like tramadol it gives me to much stomach pain and nausea and never helped my back. But once I switched to all day Norco my sleep as improved by a lot and 7⅞⅞77felt like I could do things I couldn't before , I'm on oxycodone right now which works wonders for me but I still get pain but not as much as without pain medicine works great for me . Hopefully your doc switches you off that tramadol and switches you to lortab
_________________________
Diagnosed 4+ months ago with as causes chest pain and severe back pain . Medications : methotrexate .6 per week in divided doses, Prednisone tapering off 2 5mg daily, folic acid mg daily, dicloymine for stomach pain and cramping , ranitidine 150mg twice daily and Prilosec 20mg extended release once daily , Carispodol (Soma) 350mg 5 times daily , oxycodone 10mg every 4 hours as needed

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#279000 - 09/13/17 05:56 PM Re: stopping remicade or not [Re: KayF]
SouthernMoss Offline
Registered Visitor

Registered: 03/12/13
Posts: 1735
Loc: MS
I agree it's time for a change. I hope the Humira (or whatever you end up with) will work better for you.
_________________________
Ginny - 56 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacement June 2014
MTX, Humira, Cyclobenzaprine, plus Indomethacin ER as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Melatonin, Culturelle probiotic

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