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#516286 - 12/24/16 04:05 PM Tried Humira and Remicade and no relief...now what
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Hi everyone,

Been struggling to find pain relief in my back and my feet over the last 6 years and I really don't know what to do now that Humira and Remicade have done nothing to help me. I am still on Remicade - been 6 months, but I don't feel much relief other than some mild morning relief/stiffness. I still can't sit for long, can't walk far due to swollen heels and metatarsal pads and unable to bend forward.

My rheumy informs me that each time I try a new biologic, my chances of responding to it decrease. Humira did absolutely nothing, remicade provided MILD relief but far from beneficial. I have tried the anti inflam diets - nothing.

Anyone had similar experiences? Any ideas on what I could try next?

Thank you!
Paul

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#516308 - 12/29/16 10:35 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 21302
Loc: Upstate NY
My aunt was on Remicade for several years and it did..NOTHING.

Then they put her on another newer one, specifically supposed to be good for psoriasis, can't remember which one, and it has been miraculous for her.

I was lucky that Humira worked so well for me right from the start.

But a lot of people have to try several before they find one that works...

don't give up hope.

They are coming out with new ones that attack the immune system in different ways all the time.
_________________________

sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)

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#516317 - 12/31/16 09:20 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
ValsMum Offline
Steel_AS_Kicker

Registered: 07/05/10
Posts: 1173
I tried Remicade and Humira too. The thing that helped most was RF ablation for my si joints and eating 90% raw foods , it really does help. I canot eat grains, dairy or starchy stuff without feeling pain. I feel best eating raw, its hard at first, but I find the arthritis pain to be harder to deal with than the diet.

take care
_________________________
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

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#516325 - 01/01/17 04:02 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
drone3 Online   content
Member

Registered: 03/12/16
Posts: 31
Remicade stopped working for my arthritis after 6 months, started off well then just tapered off. My GI doc wants me to stay on it so I'm trying to tackle AS with diet and stretching and although it's hard it actually works.
_________________________
1992-'93 DX Colitis -> Total Colectomy / J-Pouch.
2015 DX Sacroilitis (USpA, AS?)
Taking - Infliximab, H2O2, Triphala, Transdermal Magnesium w/MSM
Diet - No Sugar/Dairy/Starch/Alcohol

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#516733 - 03/05/17 08:59 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4478
Loc: NE Oklahoma
I can say great things about Cimzia. It worked longer than any of the other 4 biologics I tried (though I might have bailed on 2 of them before waiting out flares). In fact, if I hadn't had to stop taking it for a pesky lung nodule following a case of pneumona, it might still be working past 3 yrs. Talk to your rheumy. All of them are about equal, but people have different responses to different drugs. After all, we are all different.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cosentyx (6th biologic) starting soon.
Epidural Steroid Injections x7; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x8

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#516734 - 03/05/17 09:03 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4478
Loc: NE Oklahoma
I can say great things about Cimzia. It worked longer than any of the other 4 biologics I tried (though I might have bailed on 2 of them before waiting out flares). In fact, if I hadn't had to stop taking it for a pesky lung nodule following a case of pneumona, it might still be working past 3 yrs. Talk to your rheumy. All of them are about equal, but people have different responses to different drugs. After all, we are all different.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cosentyx (6th biologic) starting soon.
Epidural Steroid Injections x7; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x8

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#516774 - 03/13/17 05:47 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Paul,
I'm onto my fourth anti tnf now over the last 12 years or so. 1st & the best for me was Infliximab (Remicade), then Humira, Simponi, currently on Enbrel now. Although I've been off Enbrel now for around 4 weeks, due to related side effects. Ear problems mainly. Hopefully I'll start back on Enbrel again soon. I just found over time the anti tnf treatments to wear off slowly. Hence, changing them.
Although there were areas of my body anti tnf never really cut the mustard. Went from a whole body ache, to 2-3 deep areas of constant pain. Which was an improvement for me. I've also tried eradication diets, which didn't work for me. I was quite happily plodding along with NSAID's to control my A.S, until they nearly destroyed my stomach. Reason I started on anti tnf.
My A.S has also involved my eye's. Anti tnf did nothing to help in this department.

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#516776 - 03/14/17 07:24 AM Re: Tried Humira and Remicade and no relief...now what [Re: Boroboy]
Frederick Offline
First_Degree_AS_Kicker

Registered: 03/28/06
Posts: 156
[quote=Boroboy]

I just found over time the anti tnf treatments to wear off slowly. Hence, changing them.

I was quite happily plodding along with NSAID's to control my A.S, until they nearly destroyed my stomach.

/quote]

Hy Boroboy
Yes I have also found that my Anti-TNF (Enbrel) has worn off over the years but then I have been on it for a long time about 10 years. They now have me on Etoricoxib (Arcoxia) rather than the indomethacin that I have also been on for a long time. This is only the first few days on the Arcoxia and things don't look too good on it. If the Arcoxia does not work then they have said they will change my Anti-TNF from Enbrel to another probably Humira.

Yes it is all too easy as you say to be just "happily plodding along" on the same old NSAIDs. I first went on NSAIDs. way back in 1964 at the age of 18. By the age of about 29 my stomach started to play up and I went on a then new drug called cimetidine (Tagamet). This solved my stomach probs. and I was able to continue with the NSAIDs.

By today aged 70 I am on a newer stomach protector called Lansoprazole and it does it's job of solving any stomach probs. very well. An endoscope examination showed that I had two stomach ulcers that had healed due to my having been on the Tagamet.

I have been very lucky regarding eye problems due to my A.S. I remember having the one attack of what the doc. said was Uveitis or Iritis whatever many years ago. He gave me some drops and that was the end of the matter. It soon disappeared never to return. I wonder if it even was as a result of my having A.S.

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#516777 - 03/14/17 05:49 PM Re: Tried Humira and Remicade and no relief...now what [Re: Frederick]
Boroboy Offline
Warrior_AS_Kicker

Registered: 10/25/03
Posts: 467
Loc: North East, U.K.
Frederick,
I take Arcoxia occasionally for my pain, even taking it with Lansoprazole my stomach is still a bit sore. So only use it really when I really need it. Probably tomorrow for work. Regarding my eye issues, I have S.J too. Had my tear ducks plugged. Use artificial tears on a regular basis. My eyes feel like a desert at times, especially during the night. probably had this condition from the age of 21, but didn't realise it then. Had iritis around 8 years ago. Due to complications, I had a cataract operation. I now suffer from severe photophobia within my right eye. Have to wear wrap around sunglasses indoors & out. Been that way for around 8 years. Even wear them for work, office etc.
A.S brings it's daily challenges for most of us, no doubt. Seems to effect different parts of my body now. Moved away from the main areas, seems to be effecting my peripheral joints more. I've suffered from pelvic floor muscles issues recently.
I've been off Enbrel for a while now & feeling it. Due to ear issues. Infections. Once I stop they clear up.
Neither have I experienced any type of remission from my A.S, although I have had lower pain days. Especially whilst on my first anti tnf (Remicade).

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#516779 - 03/15/17 08:16 AM Re: Tried Humira and Remicade and no relief...now what [Re: Boroboy]
Frederick Offline
First_Degree_AS_Kicker

Registered: 03/28/06
Posts: 156
Originally Posted By Boroboy


A.S brings it's daily challenges for most of us, no doubt. Seems to effect different parts of my body now.

Neither have I experienced any type of remission from my A.S,



Yes I suppose most sufferers find their condition changes as time goes on. The last few years have been rather bad only they now tell me it is more of a ligament thing Enthesitis rather than joint problem. All I know is that it still bloody hurts whatever the cause.

I must admit that even after all these years I still get concerned whenever I get a pain somewhere that I have never had a pain before. The doctors and us patients are all too apt to put any new pain down to being just some other A.S. thing rather than investigate such things as they should.

There have been times when I thought my A.S. was in a state of remission or at least very near remission. There was one of about eight years when I really thought this is it that damn disease has at last left me. So we make the best of any chance we get to live as normal a life as we can and just get on with it.

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#516942 - 04/20/17 09:27 AM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
arsimoun Offline
New_Member

Registered: 02/17/05
Posts: 23
FWIW, Humor stopped working for me; I formed antibodies to it. Sigh. Rheumie is trying to get me approved for Consentyx, Anyone have any experience with this drug?

Adam Rodman

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#517442 - 07/20/17 06:48 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 71
Loc: SF Bay Area, CA, USA
Yeah, the problem with monoclonal antibodies, even the fully-human ones like adalimumab, golimumab, and secukinumab is that there is one little part of the antibody that is foreign to the patient, and that's the part that binds the TNF. About 1/3 patients will eventually form neutralizing antibodies.

The only one that has much less potential for this is etanercept. In the case of etanercept the entire protein is fully human and is found in every human living today. Antibody formation is much lower with etanercept.

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#517446 - 07/21/17 03:02 PM Re: Tried Humira and Remicade and no relief...now what [Re: arsimoun]
snipe_Chief Offline
New_Member

Registered: 07/16/09
Posts: 20
Loc: Virginia, USA
I'm on my 6th week of Cosentyx, 2 weeks since my last shot and I feel better than I have in years! You start with a series of 5 total weekly shots then go to monthly maintenance. So I'm two weeks away from my first monthly shot but it's holding strong. I was close to pain free in the first week. Yes, there's still pain and I can't walk for too long before I start to hurt, but I'm doing better that I have in years. I was unable to stay in bed longer than 6 hours due to pain prior to starting it, now I can get a good night's rest!

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#517447 - 07/21/17 03:28 PM Re: Tried Humira and Remicade and no relief...now what [Re: snipe_Chief]
MikeGinnyMD Offline
Active_Member

Registered: 01/24/09
Posts: 71
Loc: SF Bay Area, CA, USA
Thanks for the story, snipe-Chief. I'm so glad to hear it's helping you. These drugs truly are miracles.

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#517450 - 07/21/17 11:54 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4478
Loc: NE Oklahoma
Good to hear the good you have with Cosentyx, snipe_chief. Will be starting it soon and hope for good results. Where in VA are you located? I'm visiting Tidewater area in 3 weeks (was stationed there back in early 80s at Ft Monroe) for an Army reunion. Great place to visit, but I wouldn't want to live there any longer. Enjoyed my time there, but I'm done with East coast--any of it. LOL.
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cosentyx (6th biologic) starting soon.
Epidural Steroid Injections x7; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x8

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#517451 - 07/22/17 11:19 PM Re: Tried Humira and Remicade and no relief...now what [Re: snipe_Chief]
jay_bharat Offline
Commanding_AS_Kicker

Registered: 12/08/08
Posts: 667
Loc: INDIA, Tamil Nadu
Hi,

Whether the loading dose of 0,1,2,3,4 for cosentyx is required for who were on remicade, humira etc., Whether methotrexate to be taken while on cosentyx.

Jay

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#517457 - 07/26/17 05:22 PM Re: Tried Humira and Remicade and no relief...now what [Re: jay_bharat]
arsimoun Offline
New_Member

Registered: 02/17/05
Posts: 23
I have been on Cosentyx since May. It seems to be working well for me. I was able to have cataract surgery (no Iritis since starting Cosentyx) after having to postpone three times when the Humira stopped working. Once you've done the initial loading period, you take only one injection a month. Very convenient.

FWIW

Adam Rodman

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#517460 - 07/28/17 09:32 AM Re: Tried Humira and Remicade and no relief...now what [Re: jay_bharat]
snipe_Chief Offline
New_Member

Registered: 07/16/09
Posts: 20
Loc: Virginia, USA
My Rheumy is keeping me on the meth for now... I'm hoping as I continue to show improvement on Cosentyx I can talk him into weaning me off the meth. I can't take Sulfazine or anti-TNFs, so I'd like to keep meth in reserve for the future if anything goes wrong with Cosentyx.

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#517461 - 07/28/17 09:34 AM Re: Tried Humira and Remicade and no relief...now what [Re: rumble]
snipe_Chief Offline
New_Member

Registered: 07/16/09
Posts: 20
Loc: Virginia, USA
Rumble, I live near the VB campus of TCC, not too far from the courthouse area of the Beach. I spent most of my Coast Guard career here and just stayed when I retired.

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#517601 - 09/16/17 12:29 AM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
rumble Offline
Supreme_AS_Kicker

Registered: 01/31/09
Posts: 4478
Loc: NE Oklahoma
Cool to get to stay where you last were stationed, snipe. The large military support of the area is a good thing, too. Provided you are able to get all those benefits. Any problems with that, considering the density of military retirees in that area? Or is it easier to get your medical things on the local economy using Tricare (or can you use it as a retiree??)? I got out of Army after 6 yrs due to starting a family, so never had the option of retiring--so I never really followed how those things went. Starting Cosentyx this weekend!!!! Woohoo!!!!!
_________________________
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis
Meds: MTX since Oct 2009, 15mg/week. Cosentyx (6th biologic) starting soon.
Epidural Steroid Injections x7; Lumbar Radiofreq Ablation x2
SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x8

Top
#517706 - 10/08/17 08:10 PM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
psr Offline
Apprentice_AS_Kicker

Registered: 08/21/13
Posts: 90
Thanks for all the replies, everyone. I have now been on Remicade (inflectra) for 1.5 years. My morning stiffness is quite a bit better, but other than that, I am struggling with plantar fasciatis, neuromas in my toes, stiff lower back (unable to bend forward), stiff neck and shoulders. Initially, I wonder if I should switch to cosentyx...

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#517753 - 11/03/17 07:13 AM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
Robin_H Offline
Apprentice_AS_Kicker

Registered: 09/13/15
Posts: 87
Loc: Hubei, China
When NSAIDs and DMARDs really do not work for a patient might they have been misdiagnosed???
_________________________
HLA-B27 neg; Mis-diagnosed with fibromyalgia in mid-20s.
Vague AS symptoms in 20s and early 30s (no diagnosis).
During age 47 (2015) from NSAID use developed complete axial inflammation (started from from skull and progressed down to sacrum). Included psoriasis. Trigger in scull was reverse blockage in a SCUBA mishap in 2013. Straw that broke the camels back was over use of NSAIDs. NSD works well but not perfect. Strong involvement between symptoms and gut integrity.

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#517755 - 11/03/17 08:00 AM Re: Tried Humira and Remicade and no relief...now what [Re: psr]
Frederick Offline
First_Degree_AS_Kicker

Registered: 03/28/06
Posts: 156
It is a possibility the rheumatologist must consider.

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