|
Forums33
Topics44,197
Posts519,915
Members14,168
| |
Most Online3,221 Oct 6th, 2025
|
|
Administrator/owner:
John (Dragonslayer)
Administrator:
Melinda (mig)
WebAdmin:
Timo (Timo)
Administrator:
Brad (wolverinefan)
Moderators:
· Tim (Dotyisle)
· Chelsea (Kiwi)
· Megan (Megan)
· Wendy (WendyR)
· John (Cheerful)
· Chris (fyrfytr187)
|
|
If you want to use this QR code (Quick Response code) just save the image and paste it where you want. You can even print it and use it that way. Coffee cups, T-Shirts etc would all be good for the QR code.
|
|
|
|
Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
|
OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
Hi KA ers.. I've been on Simponi now for close to a year.. worked great at first.. Blood work down to normal or below, minimal pain and fatigue but the last couple of months it has been wearing off and now i'm back to new pain in new areas, freezing up etc etc.. Basically the monster is back. Any ideas about bio's and long term efficacy? Sorry I haven't been around and now looking for help.. feel like a twat doing so. Thanks. R.
|
|
|
|
|
Joined: Jul 2010
Posts: 1,191
Steel_AS_Kicker
|
Steel_AS_Kicker
Joined: Jul 2010
Posts: 1,191 |
Aw, I wouldn't feel bad for coming around when you need it. I do the same thing. When I feel good I notice I don't come around as much and when I need support I come here for -support and new ideas. I can't help much with the meds. I did try remicade 2 times and then it gave me a bad heart reaction during an infusion. Try the NSD while you figure out what you are going to do ,it definately helps me with the pain.Hope you feel better soon.
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 excess fat/oils = pain for me recipes for raw food on Youtube "raw food romance" and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
|
|
|
|
|
Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
|
OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
Hey thanks. Yeah it has been like that ... pretty good the last year and busy and working again.. Had no time to think about the AS actually. But i'm having a reality check now. See the rheumy in a month so will be interesting to see what the blood tests show.. will keep posted on the simponi situation.. thanks.. 
|
|
|
|
|
Joined: Oct 2001
Posts: 183
First_Degree_AS_Kicker
|
First_Degree_AS_Kicker
Joined: Oct 2001
Posts: 183 |
I know for a fact that if you are taking these for AS you have to take it with methetraxate. The molecule is open and has no protection from being attacked by your body. If you take the methetrxate you will see an improvement big time. Enbrel and Cimzia are the only two that you do not have to take methetraxate.
"An error made on your own is safer than ten truths accepted on faith, because the first leaves you the means to correct it, but the second destroys your capacity to distinguish truth from error."
- John Galt, Atlas Shrugged
|
|
|
|
|
Joined: Feb 2006
Posts: 1,483
Silver_AS_Kicker
|
Silver_AS_Kicker
Joined: Feb 2006
Posts: 1,483 |
I know for a fact that if you are taking these for AS you have to take it with methetraxate. The molecule is open and has no protection from being attacked by your body. If you take the methetrxate you will see an improvement big time. Enbrel and Cimzia are the only two that you do not have to take methetraxate. With Simponi they ran trials with MTX and without MTX and saw no difference in effectiveness or in antibody preoduction. The makers of Simponi don't even recommend MTX to be used with Simponi for AS based on those trials. Says right on the literature I get in every packet Simponi was designed to reduce the chances of developing antibodies to it. I have been on Simponi for almost three years now and NO MTX. Doc says not needed and that is it more a recommendation for RA.
Last edited by drizzit; 05/09/12 04:29 AM.
No families take so little medicine as those of doctors, except those of apothecaries.
Oliver Wendell Holmes
|
|
|
|
|
Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
|
OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
I'm on mtx... in oz you have to take it together with simponi to qualify for pbs subsidy (medicare). Only bio i haven't had is remicade. I'm expecting my bloodwork to be elevated, It's not critical right now but does feel like its coming back... pain and mobility wise. Has Simponi stayed good for you drizzit? Do you still get flares?... Thanks..
|
|
|
|
|
Joined: Feb 2006
Posts: 1,483
Silver_AS_Kicker
|
Silver_AS_Kicker
Joined: Feb 2006
Posts: 1,483 |
I'm on mtx... in oz you have to take it together with simponi to qualify for pbs subsidy (medicare). Only bio i haven't had is remicade. I'm expecting my bloodwork to be elevated, It's not critical right now but does feel like its coming back... pain and mobility wise. Has Simponi stayed good for you drizzit? Do you still get flares?... Thanks.. Yes simponi has been great for my son and me. It has kept us almost in remission for 3 years now. my CRP went from 8.5 to .2 and stayed there. At first it only lasted about 25 days or so but when I put the NSD diet on it I get about 40 - 45 days of relief with each shot now. Could also have been that over time the simponi has built up in my system and it is lasting longer as well. I hope it is just a minor flare for you and it settles back down. I love the only once a shot dosing of Simponi. One reason I choose it given how much I travel.
Last edited by drizzit; 05/09/12 10:28 PM.
No families take so little medicine as those of doctors, except those of apothecaries.
Oliver Wendell Holmes
|
|
|
|
|
Joined: Jan 2009
Posts: 4,501 Likes: 1
Supreme_AS_Kicker
|
Supreme_AS_Kicker
Joined: Jan 2009
Posts: 4,501 Likes: 1 |
How does Simponi do for psoriatic arthritis? Curious since I've just been diagnosed with psoriasis. Being HLA-B27 positive, wonder how this will be to my rheumy who somehow has me coded as having RA even though all my RA tests are negative (RF, anti-CCP).
DX: Psoriatic Arthritis, Osteoporosis, Psoriasis Meds: MTX since Oct 2009, 15mg/week. Cimzia-restarted after 2 yrs away. Epidural Steroid Injections x8; Lumbar Radiofreq Ablation x2 SIJ Steroid Injection x3; Bilateral Radiofreq Ablation SIJ x9
|
|
|
|
|
Joined: Feb 2012
Posts: 126
Journeyman_AS_Kicker
|
Journeyman_AS_Kicker
Joined: Feb 2012
Posts: 126 |
Sorry to hear that you are still have flares. I am on Enbrel and Mtx. And I still flare but no where near to the level as before. It,s like it has taken the edges off, made life more livable. But hasn't touchd the hip and periphery pain...Rehumi says it won't....
Does Simponi work better? how about headaches?....
Thx. Laurel
Diagnosed with AS in 2007 Hx of episodic back pain since I was 13. Fibromyalgia Diagnosed Feb. 2013 methotrexate and Enbrel Started LSD Feb 2012 Vit B,C,D, fish oil, folic acid, 5HTP, Gabba,Magnessium. I am so much more then my symptoms:)
|
|
|
|
|
Joined: Mar 2009
Posts: 185
First_Degree_AS_Kicker
|
OP
First_Degree_AS_Kicker
Joined: Mar 2009
Posts: 185 |
I had patches of psorisis before simponi and it all cleared up immediately. I think once the inflammation calms down the body is less stressed and other problems recover. I was on embrel for a month but had allergic reaction and major headaches. Same with humira. Haven't had any probs with simponi though.. it has overall been a life saver.. doing much better even with minor flares. :-)
|
|
|
|
0 members (),
555
guests, and
353
robots. |
|
Key:
Admin,
Global Mod,
Mod
|
|
|
|