I published this series of posts during the year I was on Orencia. The following are my experiences.
August 2015-August 2016
Tomorrow, I have my first infusion of Orencia. It is a biologic used to relieve symptoms and slow the joint destruction of Rheumatoid Arthritis.
I have just read the medical insert for Orencia. The studies are hopeful. (Having statistics in college finally pays off.
The infusion will take 30 minutes. My son is going with me. He is good company and a morale booster. In two weeks, I will have another infusion. At one month I will start infusions monthly. I will be happy to have the infusions as long as they help.
I have read endless online comments of those who have taken Orencia. They have met with success for the most part. Success means less pain, less disability. It means more energy. It means more life.
Orencia, after three months
I knew Orencia was working for me one week after my first infusion. Swelling in my hands, ankles and feet gradually disappeared until at three months I only have minor swelling in my hands. My daily dose of RA pain has subsided to mostly feet pain, occasionally hand pain and spine pain. My improvement is amazing and feels like a miracle.
It feels like a miracle because I had been in uncontrolled RA pain since the Fall of 2012. Now in the Fall of 2015, the pain is almost gone. Thanks to Orencia my RA fog is lifting. I have more energy. And I will have a lot more energy as I move more.
I am still on other medications for my RA. I am on Methotrexate injections. I take Plaquenil, meloxicam, gabapentin. My prednisone is 2/3 of original dose and decreasing.
I go to the infusion center once a month. Time is about one hour. Occasionally, I have what feels like a rebound effect. About a week after the infusion, I have a day or two of inflamed joints. Then it’s gone. Then it’s good.
Orencia is expensive. My insurance co-pays maxed out, so I have no more co-pays until the beginning of next year. I do have an Advantage Medicare insurance program so am not eligible for financial assistance from the Orencia drug assistance programs.
I had the expectation that this drug would work. I have no idea why except that nothing had worked up until this medication. I am glad it works.
Hopefully, my experience will give you a little optimism. Eventually, you will find something that will work for you too.
Orencia Seven Infusions
Next week I will have my 8th Orencia infusion. My time in the infusion center is about an hour. It is usually uneventful. I am given benadryl, pepcid and another little pill I was told was for allergies. Blood is drawn for inflammation markers, C-Reactive Protein and SED rate, metabolic panel and CBC.
Since I have been having the infusions, my neutrophils have become normal. My joint swelling has been greatly diminished. My pain levels have been reduced.
I do have a weird cough. It is weird because when I enter a space away from home, I start coughing. It goes on for a bit and finally comes under control. Sometimes I feel like I have the flu, but I don’t.
I still don’t have as much energy as I would like. I do have some RA problems. Still, I am better than I was before the Orencia.
I went to a number of online communities to see what others were experiencing with Orencia. There were many miracles. Good results. There were some with the same cough, flu like response that I have. There was one who went into anaphylactic shock on her 17th infusion. There were many who had serious problems with headache. There were some who had rash and itching problems.
I also read several studies on Orencia. I am also on methotrexate injections.
The results of the study at six months: 67% had a 20% improvement in symptoms; 45% had a 50% improvement; and 14% had a 70% improvement.
So a 100% improvement doesn’t seem likely. So, the expectation might not be a miracle but a good improvement in symptoms.
My flares are getting worse. I have come down with a horrific flu. It is the worst that I have had in years. Dr Reiter agreed that it was time to stop the Orencia infusions. I had good results for over nine months. I wish it had lasted longer.