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#390433 - 04/30/10 09:35 PM Re: After 8 months mtx doesn't seem to be working [Re: rumble]
WendyR Offline


Registered: 12/23/08
Posts: 4967
Loc: BC, Canada
Hi Rumble,

I don't think mtx is the last DMARD to try. I can't remember what the doc suggested next but it wasn't an anti-TNF just yet. Still, this has been almost 18 months of trying different DMARDS (three) while relying on prednisone to keep things sufficiently under control that I can continue to work.

Thanks for the hugs - I'm practicing being squeaky!
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex

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#390434 - 04/30/10 10:52 PM Re: After 8 months mtx doesn't seem to be working [Re: WendyR]
WendyR Offline


Registered: 12/23/08
Posts: 4967
Loc: BC, Canada
Well - I looked up Kineret. Interestintg! It's a biologic like
Enbrel, Humira and Remicade. However, the downside seems to be that it's injected daily! Arrrgh! That sounds a bit hard. I think I'd prefer to start with one of the weekly ones, like Enbrel.

I haven't found any reason so far why Kineret would be prescribed over one of the others. Although it's possible that it could be more effective for RA. The literature only talks about RA, not AS or any of the spondys.

I'm interested to know if anyone else is familiar with this drug.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex

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#390436 - 04/30/10 11:21 PM Re: After 8 months mtx doesn't seem to be working [Re: WendyR]
Sue22 Offline
Very_Addicted_to_AS_Kickin

Registered: 01/13/08
Posts: 19064
Loc: Upstate NY
well, you are much more patient than i think i'd be.

with the nsaids, i gave the aleve a good try........for 2 weeks.......but as soon as i felt the negative side effects coming on, knowing from past experience that they'd just get worse and worse, for nsaids and cox2 inhibitors they always always do.......so after 2 weeks, said, "next (drug)! please" but really pissed when that next drug was another nsaid. so waited til convenient for me to take that one, took it a few days, again felt the edema and gastritis, and again said next drug please, but a third nsaid, so pretty quickly, i took that one for a day, just to say i tried it, immediately could feel the side effects and said "can't take that one either." finally he stopped with the nsaid game but then it was like stale mate, until i was able to say "you promised you'd help me, you claim you don't want to give me anything "unsafe" so feel your hands are tied, so what about LDN" i used his own arguments against him "you promised you'd help me. you say you would prescribe something if only there were something safe." he does research, seems to enjoy logical thinking, thus seemed like he couldn't find a way to say no to the LDN. not to say my world is perfect by any stretch of the imagination but knowing they haven't dx'ed me, puts a new wrinkle into it for me.

but you, you have RA and pretty badly from what i can gather........unless you'd prefer to avoid the biologics if at all possible, in which case, the choice is yours to make, IMHO. but if you are frustrated by the process, well, you certainly don't show it, and are better than i in this regard. also, as far as biologics are considered, what about the simponi i've heard about, that one sounds like the easiest to administer. anyway, i hope they help you soon, however that may be. 18 months and counting just seems like an awfully long time to me.
_________________________


sue

USpA
LDN/zanaflex/flector
vits C, D. probiotics. fish oil. CoQ, Mg, Ca
pred taper for flares
occasional naproxen / Aleve
chiro
walk
no dairy (casein sensitivity), limited eggs
future: humira, soon I hope

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#390438 - 04/30/10 11:31 PM Re: After 8 months mtx doesn't seem to be working [Re: Sue22]
WendyR Offline


Registered: 12/23/08
Posts: 4967
Loc: BC, Canada
You're right, Sue. It does seem like an awfully long time - especially as I suspect that I've got damage beginning. I probably should get x-rays - the trouble is they expect me to hold my arms above my head and my right arm absolutely won't - I'd be screaming in pain or passing out - so I'm not sure how they'd do the x-ray. I'm going to talk to him about it at my next appointment - probably next week.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex

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#390464 - 05/01/10 10:10 AM Re: After 8 months mtx doesn't seem to be working [Re: WendyR]
mig Offline


Registered: 04/27/02
Posts: 12237
Loc: ON, Canada
Hi Wendy,

Just thought I'd add in here for those who may not be aware - unlike the biologics Enbrel, Remicade and Humira which are TNF-alpha blockers/inhibitors, Kineret instead acts as an (IL-1) interleukin-1 receptor to block IL-1, which seems a fundamental difference. Both target inflammation pathways but differently.

Here's the description from Kineretrx.com, 'Mechanism of Action' page:
http://www.kineretrx.com/professional/about/mechanism_action.jsp

"Kineret® is a recombinant, nonglycosylated synthetic form of the human interleukin-1 receptor antagonist (IL-1Ra) that mimics the body's endogenous mechanism for regulating IL-1."

I'm not really up on which show better results in RA but I know you'll do your research before taking any leaps! smile

Hugs,
mig

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#390465 - 05/01/10 10:23 AM Re: After 8 months mtx doesn't seem to be working [Re: mig]
WendyR Offline


Registered: 12/23/08
Posts: 4967
Loc: BC, Canada
Thanks Mig - I didn't spot that diffrence.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex

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#390519 - 05/01/10 03:25 PM Re: After 8 months mtx doesn't seem to be working [Re: WendyR]
drizzit Offline
Silver_AS_Kicker

Registered: 02/25/06
Posts: 1416
Loc: Montana
There is another one out there called orencia. It is not a TNF either but I am not sure what cytokine it blocks. It may be like Kinneret
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes

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#390523 - 05/01/10 03:56 PM Re: After 8 months mtx doesn't seem to be working [Re: drizzit]
WendyR Offline


Registered: 12/23/08
Posts: 4967
Loc: BC, Canada
Thanks, Drizzit. I'll check that one out as well. I'm interested to learn whether some are better for RA versus AS.
_________________________
Wendy

Rheumatoid Arthritis
Methotrexate, Celebrex

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#390526 - 05/01/10 04:39 PM Re: After 8 months mtx doesn't seem to be working [Re: WendyR]
drizzit Offline
Silver_AS_Kicker

Registered: 02/25/06
Posts: 1416
Loc: Montana
Kinneret was in trials for AS and results were mixed. There was no clear cut improvement in the trials.

I am unsure if Orencia was trialed for AS
_________________________
No families take so little medicine as those of doctors, except those of apothecaries.

Oliver Wendell Holmes

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#391009 - 05/04/10 05:06 PM Re: After 8 months mtx doesn't seem to be working [Re: WendyR]
protrainer Offline
First_Degree_AS_Kicker

Registered: 11/05/09
Posts: 194
Loc: Ontario, Canada
Ah Wendy...

I haven't checked this forum recently - I missed your post about your pain and frustration until now.
I certainly hope that they (the docs) can find a more suitable (read effective) alternative on the next go. As Sue said, you are far more patient than I'd ever be. You deserve a quick result with the next try indeed.
There really has to be a better way.

Be better soon! Hugs.

Tracey
_________________________
"You can discover more about a person in an hour of play than in a year of conversation" - Plato

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