would like to hear from anyone responding to Orencia

Maryi

I have been on Methotrexate for the past 3 months.  The pills I took in 2002 made me want to vomit & I my hair thinned out, so this time I opted for injections.  So far, I have not experienced any side effects other than an increase in morning nausea. Thank goodness my hair did NOT fall out this time.  I'm taking 50 units per wk, but not sure if it is benefiting me. 

Thanks for your advice.  I have had to detox my body many times before, especially after taking Arava for 2 months last year. 

Angie 

Hi Angie,

i came off the tablet form of methotrexate and on to the injections was great for 6 months then I got a bout of food poisoning and all hell broke loose, hair fell out, liver and kidneys started to act up etc., I too am taking arava, but at this stage I am taking so much and everything has side effects.   The best of luck and have a great christmas.

Mary

Cindy wow 5 years on orencia how has it been for you.? I have been on it for 6 months and rheumy says that is the length of time people stay on it before changing to something else...then when I said I could not only just stay on mtx and needed something else agreed to leave me on it for 6 more months..have you heard of that.? mary

Mary,

I don't understand your Rheumy.  There is nothing stronger than Orencia!  Why change after only 6 months?  I began Orencia infusions on 1/2/08.  I will have my 5th infusion next week.  This is the best I've felt in 7 years  of pain & suffering!!!!  It is my miracle drug!   I haven't had a lengthy flare-up since the day I started the therapy.  I had been using a walker for about 18 months and had NOT responded to any other biologic.  My walker has now become my coat rack.  Haven't used it since December!   I even painted my garage walls last week and was not only able to grasp the paint roller, but had no pain or swelling the next day!  Its a miracle! 

Angie

I've been on and off Orencia now for almost 2 years.  I've had to stop because of surgeries.  I want to know have any of you had any dental problems being on Orencia because I surely have!! Is this a side effect of the drug?

I have not experienced any side effects and have not noticed any changes in my teeth.  I actually have been in 2 car accidents while on Orencia and am amazed my body's abilty to heal so quickly!  I am climbing stairs and back on a treadmill for the first time in 5 years!  I am amazed at the results!  Angie

orencia is the great fooler--it fools me into thinking i have no disease at all. my energy is up, my mood is positive, the pain is managed (i do use suboxone), i have an orientation of a positive future. overlapping, is new treatment with a CPAP for my sleep apnea and adding celexa to cymbalta for pain and anxiety.

my question--orencia gradually wears off over weeks--is it real that it starts working the very day i get a dose?

Three of my grandfathers siblings had RA and were in wheelchairs for 20 + years, thanks to Orencia, I have put my walker in the storage building  several months ago and am able to walk up 6 flights of stairs in my office building today.  Hard to believe that one year ago, I couldn't walk up 3 steps!   I've had 13 infusions and am doing better than I have in 8 years!  My symptoms developed 8 years ago this week.  It works for me.  I did missed my infusion by a week this month and experience a terrible flare up for the first time since on the medication.  Just as my Rheumy told me, my symptoms went away 24 hrs after my infusion.  I won't miss another one!  My co-workers are amazed at the progress that I've made in 11 months!  I'm working out and have lost 20 lbs! I hope you have the same results that I have had. 

Angie

i've been on orencia a little over a year. and for about 9 out of 12 months i've felt awesome. but now i'm starting to feel like my orencia isn't "lasting" as long between treatments. i feel great for like the first 2 wks after my infusion and then the next 2 wks the fatigue sets in and i'm bone tired/depressed/lethargic until my next treatment, when i bounce back again. anyone else have a similar experience??

I felt awesome for the first 13 months on was on Orencia, then in the 14th month I had a terrible flare-up, just 2 weeks before I had surgery on cervical spine.  Shortly after the surgery, my CRP went to 29 & I was told I was out of remission and was no longer responding to O. All my joints were swollen & I had to dust off my walker.  I was devistated.  Had not heard anyone else report anything like this.  Immediately began Ritxuan in April/May, have had a lot of the side effects, Colon infection, Kidney infection, blisters on my toes, and afterall that haven't responded and it has almost been 3 mos.  I'm switching to something in Nov., don't know what yet?