Just starting Orencia, support groups, question

[Kelley170]

Hi,

I am starting today on Orencia infusions & was wondering if anyone here has any experience with Orencia? Also are there any support groups for people on Orencia? (I read old posts & was wondering if anyone is still on this forum?)

I have Sjogrens, small fiber neuropathy with intermittent severe pain in hands & legs, SIBO, &  Raynaud's.

There are no support groups for Sjogrens in my city, so I'm glad I found this website!

This is my first post so I hope I'm doing this correctly!
Thanks!

[meirish]

Can you tell me about Orencia and what specific symptoms it is to treat? I have fairly bad Sjogrens that affects eyes, nose, airway with thick mucous in lungs plus lost all my teeth, have many, many problems with inflamed tendons in upper arms and and hands, arthritis in hands, pancreas involvement past few years plus lots of colon issues. I have taken Methotrexate, Cellcept and get infections so no longer can take them. I can't take IMuran as makes me extremely ill.

I have had severely low t-cells in the past with many infections plus I have Myasthenia Travis and have been on IVIG every month since 2006. I am interested in what drugs are out there now. I am 78 and am independent yet so still wonder if there is anything else that might help. Would appreciate any info you have. Thanks. meirish

[Sharon]

I've been on Orencia self injections for a few years now.
It's a biological and the only treatment that has helped any throughout my journey.
It's on label for RA but has been in trials for SS as well.
I highly recommend trying it if you can. You'll need your insurance's cooperation...
We have an ORENCIA SUPPORT GROUP on Facebook with a lot of information if you are interested.

[Kelley170]

Meirish I definitely agree with Sharon and highly recommned Orencia.

I have now had 5 infusions and have had good results with increased energy, less brain fog, and decreased joint pain. Also, before I started it I would have said I wasn't depressed, but after I felt the effects of the Orencia, I realized that I had been depressed. I did not feel depressed any longer after the infusions, and I attribute it to having more energy.

Everyone has different responses, but I am thankful for a positive response. I would ask your dr if you can try it.

Sharon I found the Facebook Orencia support group and found it very helpful. Thank you!

Kelley

[Sharon]

Hi Kelley, so happy to hear the support group and Orencia have been helping you!
It lifted my brain fog as well and helped with the many different form of pains I was dealing with: joint, muscle, tendons, neuropathy and fibro.
Hope it continues to help you and that others have the opportunity to try this as well - I consider it a life saver!

[susanep]

I am happy to hear this has helped some of you.
susanep

[Kelley170]

Hi Sharon,

I'm so glad that Orencia has been a life saver for you! It is helping me now too! After my last infusion, I had increased energy, reduced brain fog, and lessened joint pain. Yay! I was amazed that it would help so much. What a blessing. I am thankful for the people who created it! Hope you have a good week!

Kelley

[susanep]

All of you have me wanting to try Orencia. I have Sjogrens, lupus, Rhuematoid Arthritus, Diabetes, and Fibromyalgia.
I will have to see if my insurance will cover it, and if my doctor will let me try it.

susanep

[Kelley170]

Susanep,

What did your Dr think about you trying Orencia?  And your insurance?
I hope you are doing well!

Kelley