Simponi is history for me

[Guest guest]

Hi Everyone! I had to stop taking Simponi. Each time I took it, it made me

swell more, then I would have to take two rounds of prednisone dosepacks and a

cortizone shot to get the swelling and inflammation under control.

Anyone else have this problem with Simponi? It's been added to all the other

failures for me: vioxx, celebrex, methotrexate, humira, enbrel, and now

simponi.

I'm still swelling and hurting and I'm beginning to lose range of motion. The

bone scan showed damage in my hands, shoulders, hips, and knees. But now I

don't just swell in my lower extremities, I also swell around my waist as the

day wears on. And my ribs hurt when I breathe.

My rheumy is leaning towards orencia.

Thanks,

Kathy

[Guest guest]

Hi- There is a new IL-6 interceptor just out now.  Its been approved I think by now but am not positive.  There is also a B-Cell Blocker.  Your RA sounds fierce.  It does build up a resistance or gets smart over time.  Finds a way around everything you throw at it.  Might try Remicade since it is given via IV over three hours.  TNF blockers might not work anymore but with MTX you have a fighting chance.  Injectibles just arent strong enough given alone.  The infusion process with Remicade works immediately through your intestinal tract and you should start seeing results sooner (for me it was right away).  The things I remember are to be sure to take benadryl or claritin along with tylenol to reduce any side effect.  Stay away from people and kids as much as you can to keep yourself from getting an infection that can interrupt the regimine of infusions every 8 weeks.  Also.  Do try looking into google to find out what might be in the pipeline in Europe.  They have drugs there that are in research and approved before the FDA will allow them.  I will research for you.  My heart goes out to you.  I know how bad things can be in aggressive disease like yours.  I have been where you are and can relate totally.  While the medical community may not approve, Low Dose Naltrexone might help alot during a flare.  You might want to take a look at how it works with auto immune diseases.  There is great promise.  It is a beta endorphin and completely natural.  Yours, Deborah

On Sat, Jun 12, 2010 at 5:13 PM, kathy_d87 <kathy_d87@...> wrote:

 

Hi Everyone! I had to stop taking Simponi. Each time I took it, it made me swell more, then I would have to take two rounds of prednisone dosepacks and a cortizone shot to get the swelling and inflammation under control.

Anyone else have this problem with Simponi? It's been added to all the other failures for me: vioxx, celebrex, methotrexate, humira, enbrel, and now simponi.

I'm still swelling and hurting and I'm beginning to lose range of motion. The bone scan showed damage in my hands, shoulders, hips, and knees. But now I don't just swell in my lower extremities, I also swell around my waist as the day wears on. And my ribs hurt when I breathe.

My rheumy is leaning towards orencia.

Thanks,

Kathy

[Guest guest]

I’m sorry you haven’t had success in spite of many treatments

that are usually effective for RA. I do well on Methotrexate plus Remicade,

and haven’t tried anything else. You might make sure you have been checked by

the most sensitive test for Lyme disease because that is often mistaken for

RA. Also you might get a second opinion from a different rheumatologist. Even

if there are no new suggestions I think it will help emotionally to feel you

are getting the best possible treatment. I hope something works for you. God

bless.

From:

Rheumatoid Arthritis

[mailto:Rheumatoid Arthritis ] On Behalf Of kathy_d87

Sent: Saturday, June 12, 2010 2:13 PM

Rheumatoid Arthritis

Subject: Simponi is history for me

Hi Everyone! I had to stop taking Simponi. Each

time I took it, it made me swell more, then I would have to take two rounds of

prednisone dosepacks and a cortizone shot to get the swelling and inflammation

under control.

Anyone else have this problem with Simponi? It's been added to all the other

failures for me: vioxx, celebrex, methotrexate, humira, enbrel, and now

simponi.

I'm still swelling and hurting and I'm beginning to lose range of motion. The

bone scan showed damage in my hands, shoulders, hips, and knees. But now I

don't just swell in my lower extremities, I also swell around my waist as the

day wears on. And my ribs hurt when I breathe.

My rheumy is leaning towards orencia.

Thanks,

Kathy

No virus

found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.829 / Virus Database: 271.1.1/2932 - Release Date: 06/11/10

11:35:00

[Guest guest]

So sorry to hear

about your difficulties. I’ve never tried Simponi, but I’ve had

much better results with Orencia/MTX combo. Enbrel and Rituxan didn’t

work for me as well.

I know it’s

disheartening and takes awhile to figure out (then re-figure out), but just

hang in there. Everyone reacts differently. Talk to your rheumy, though, in

case there’s something else going on that s/he’d like to rule out. I

found that just knowing it wasn’t something even worse made me feel

better.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of kathy_d87

Sent: Saturday, June 12, 2010 4:13

PM

Rheumatoid Arthritis

Subject:

Simponi is history for me

Hi Everyone! I had to stop taking Simponi. Each time I

took it, it made me swell more, then I would have to take two rounds of

prednisone dosepacks and a cortizone shot to get the swelling and inflammation

under control.

Anyone else have this problem with Simponi? It's been added to all the other

failures for me: vioxx, celebrex, methotrexate, humira, enbrel, and now

simponi.

I'm still swelling and hurting and I'm beginning to lose range of motion. The

bone scan showed damage in my hands, shoulders, hips, and knees. But now I

don't just swell in my lower extremities, I also swell around my waist as the

day wears on. And my ribs hurt when I breathe.

My rheumy is leaning towards orencia.

Thanks,

Kathy

No virus found in this incoming message.

Checked by AVG - www.avg.com

Version: 9.0.829 / Virus Database: 271.1.1/2932 - Release Date: 06/11/10 13:35:00