would like to hear from anyone responding to Orencia

By Angie Monday, December 10, 2007

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My RA is out of control. I'm going into my seventh year of this disease. I was not diagnoised until I met with my fifth Rheumatologist, 4 1/2 years into the disease. I have just finished 9 months of Humira & 18 months of Prednisone. Had to discontinue using Prednisone because of the nasty side effects - Diabetes. I did not respond to Plaquenil or Enbrel in 2006. Have had to use a walker for over a year now to get myself in and around the office in the mornings. Since going off the Prednisone 2 months ago, I'm in one big flare and am experiencing the worst pain ever 24/7, in all of my joints. I thought the Humira was finally helping me after the 10th injection, but now I think my disease is just too agressive for the biologic to work. My depression is at an all time high. I plan to ask my Rheumatolgist this week to prescribe Orencia. Has anyone tired this fairly new drug? I won't miss the severe injection site reactions that I had to all 9 of the Enbrel shots and to 16 out of 18 Humira shots. I feel like I'm going backwards instead of forwards.

Looking for the light at the end of the tunnel -

Angie

Comments (13) | Add comment

maryi

12/10/07 12:50pm

Angie I commented on your reply to jazzy but I have just read your blog. I am so sorry I am in th 7th year and had bad reaction to methotrexate. I think that you need to detox as your whole system is crashing. If you are having reactions to the injection sites you do need a complete detox and your body is rejecting everything. If you could stand the pain try and come off everything for a week - drink loads of water and flush out your system. I had to do this after I came off the methotrexate - I was so ill that even the injection I got to stop the vomiting caused problems and I got cellulitus (can't spell) at the injection site. I checked with my doctor and he agreed that I should come off everything. I did feel very bad and had no sleep for the first 3 days but by the end of the week I felt better and then I re started on the delta cortril (steroid). I again say I am so sorry to see you so distressed and I hope you find relief soon.

Mary I

Angie

12/11/07 1:33pm

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

maryi

12/11/07 3:38pm

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

your2smart

1/28/08 3:38pm

I'm sorry to here that your disease is so progressive. I pray you feel better. I am full aware of the aweful pain we deal with everyday. I have had RA for 12 years now and I am in my mid forties with one knee replacement. I have two boys and a understanding husband. Life is difficult. The orencia seems to be working but not as well as when I first started it. I'm also taking methotrexate and folic acid and fosamax. They recently put me on 10 mg of prednisone because of a flare Cry .. I hate that drug but it sure does work. I'm going to have to wean off of it and it is going to hurt like the dickens. I sure hope you feel better.

Cindy D

2/21/08 8:19pm

Hi Angie,

I have been on Orencia for almost 5 years now and it works well. Very well. I was in severe pain for years, tried almost everything. I was on crutches and could barely walk for years. I understand. Now I rarely use a brace. Big Grin

Try It. It has worked for me when other things including other biologics have failed.

mary dicken

4/11/08 5:25pm

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

Angie

4/14/08 4:44pm

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

Geri

8/11/08 6:12pm

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?

Angie

8/13/08 2:24pm

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

Anonymous

11/17/08 11:18pm

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?

Angie

11/26/08 1:21pm

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

Ambra

7/31/09 11:01am

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??

Angie

7/31/09 11:23am

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?

would like to hear from anyone responding to Orencia

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