Author Topic: Orencia  (Read 251 times)

eye2dry

  • Hero Member
  • *****
  • Posts: 621
  • Sjogrens, RA, hypothyroid
Orencia
« on: June 04, 2019, 07:56:05 PM »
Anyone here on Orencia? 
My rheumatologist had labs drawn and ordered a chest x-ray for me today. Checking with my
insurance to see if they'll cover it. Maybe start my first infusion next week.

Has it worked for you?
Any side effects you had?

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Sharon

  • Hero Member
  • *****
  • Posts: 1260
Re: Orencia
« Reply #1 on: June 05, 2019, 01:02:36 PM »
Hi, I've been on it for about 2 years now.
I've written extensively about it in this group.
It's helped me with many symptoms but not with sicca symptoms.
It was my saviour for all pain symptoms.
It does take some time to kick in and side effects are different for everyone.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

eye2dry

  • Hero Member
  • *****
  • Posts: 621
  • Sjogrens, RA, hypothyroid
Re: Orencia
« Reply #2 on: June 05, 2019, 02:21:09 PM »
Hi Sharon.

Do you take the SQ injury at home?
I am suppose to do the 30 minutes infusions, did you do those?

I read the most common side effects and it similar to MTX .

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Sharon

  • Hero Member
  • *****
  • Posts: 1260
Re: Orencia
« Reply #3 on: June 05, 2019, 05:31:49 PM »
I do SC self injections weekly.
Side effects are very different from MTX...it's considered a much safer option!
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

Tharrell

  • Hero Member
  • *****
  • Posts: 801
  • There has to be humor in this somewhere!
Re: Orencia
« Reply #4 on: June 08, 2019, 11:22:24 AM »
I did the once a week injections, not infusions. It did help with the sicca symptoms of dry eyes and mouth, but not with the joints. After more than a year I finally convinced my rheumatologist to let me try Enbrel. My joint pain is finally in remission. I got the orencia and enbrel approved for seronegative ra.
MCTD, sjogren's,dRTA,sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,
Plasmapheresis,plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,ranitidine

eye2dry

  • Hero Member
  • *****
  • Posts: 621
  • Sjogrens, RA, hypothyroid
Re: Orencia
« Reply #5 on: June 08, 2019, 03:29:02 PM »
I got a phone call yesterday from my rhuemy office saying that barely anything is going to be paid
on my Orencia infusions. The woman said the Orencia injections are more reasonable and she would ask
the Dr. If I could do that. I have no idea why he even wanted me to do infusions vs the injections.

I have medicare as primary and Anthem secondary. I am finding out that when I just had Anthem I paid
my Co pay and everything was fine. Now that I have 2 insurance. I am paying more out of pocket.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Sharon

  • Hero Member
  • *****
  • Posts: 1260
Re: Orencia
« Reply #6 on: June 09, 2019, 05:28:36 PM »
Many it's for the best Shelly.
I personally recommend the injections over the infusions.
It's more convenient to do them at home and they give you a steady improvement.
With infusions usually you have to have it done at a hospital, they usually add high dose steroids to counteract possible reactions to the infusion and for some people the effect of Orencia wears off before the month is up.
You can join the Facebook "Orencia support group" for a lot more information on Orencia and support throughout.  :)
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...

eye2dry

  • Hero Member
  • *****
  • Posts: 621
  • Sjogrens, RA, hypothyroid
Re: Orencia
« Reply #7 on: June 09, 2019, 06:24:26 PM »
Thank you Sharon.
I would prefer the home injections....yes, more convenient for sure.
I suppose the Dr will agree.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

Tharrell

  • Hero Member
  • *****
  • Posts: 801
  • There has to be humor in this somewhere!
Re: Orencia
« Reply #8 on: June 10, 2019, 10:50:26 AM »
I had asked my rheumatologist if the infusions were any better than the injections, because I was not happy with my results. She told me the infusions were more for obese people who would need larger doses and I did not qualify for that.
MCTD, sjogren's,dRTA,sero neg. ra,achalasia,Morvan’s syndrome,familial dysautonomia,POTS, MCI, IC. Occular neuromyotonia migraines,raynauds,
Plasmapheresis,plaquenil,requip,B2,topiramate, synthroid,diazepam,trulance,enbrel,cevimeline,
arava,ranitidine

irish

  • Global Moderator
  • Hero Member
  • *****
  • Posts: 13252
Re: Orencia
« Reply #9 on: June 10, 2019, 11:51:57 PM »
The infusions are for people who need higher dosages of IVIG. The obese angle is important because obese people have more trouble absorbing the subq method. Also, people who get higher dosages of IVIG are getting it because they need the higher dosage.

I get 80 grams of Privigen for my myasthenia gravis and it has also helped my immune deficiencies. I don't think it has done diddly for my Sjogrens. If it is helping then I must have Sjogrens really bad because I am sick constantly with the Sjogrens issues. Anyway, I asked my immunologist if I could do the injections at home and he told me years ago that I needed the higher dosage of IVIG due to my myasthenia symptoms and high anti striated muscle antibody.  Everybody has their reason for doing things.....who are we to question, cause we just follow along in line with the others. ;D ;D Good luck. Irish

eye2dry

  • Hero Member
  • *****
  • Posts: 621
  • Sjogrens, RA, hypothyroid
Re: Orencia
« Reply #10 on: June 11, 2019, 11:36:05 AM »
My Orencia infusions are 250mg. I am to go once a week for 3 weeks, then once a month thereafter.
What mg dosing does the home injections come in?

I didn't think I was obese. I am 5 ft 3in and 156 pounds. Pre menopause I was 128 lbs.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

markt

  • Full Member
  • ***
  • Posts: 175
Re: Orencia
« Reply #11 on: June 11, 2019, 03:09:25 PM »
I agree. I do Rituximab intravenously and I'm a 6'2 165lb guy... not so sure that's exactly why (being "big").

Sharon

  • Hero Member
  • *****
  • Posts: 1260
Re: Orencia
« Reply #12 on: June 11, 2019, 03:28:17 PM »
irish- Very good explanation!

Shelly- Injections are 125 mg every week.

markt- Rituximab can only be taken intravenously.
Sjogren's (+ RA?) positive ANA, RNP, RNP-A, APCA salivary gland swelling, dry mouth & eyes,, eyelid swelling & redness, photosensitivity, fatigue, severe joint pain, multiple sensitivities and allergic reactions 
Orencia, Restasis, Paleo Diet, Vit. D & C, Ubiquinol 200mg, Omega 3...