Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Orencia on Friday, any advice?

Rosemo
Rosemo
I have been diagnosed for almost a year. Tried MTX, been on Enbrel and Arava now for 7 months. I will start Orencia this friday. Was concerned to try this so soon, but not satisfied with my current results. Folks here have been supportive and I'm mentally ready, but wondering if anyone has found any tips on how to make the experience better. There are so many things we have learned from each other, that our doctors never share, so just thought I'd ask before I take the plunge!
disneyfan
disneyfan
I'm in almost the same boat..starting Remicade on the 18th..I'm scared but can it be worse than the other drugs we've taken??



good luck

Kim
deleted_user
deleted_user
Let me awssure you the infusion is a piece of cake! I was worried like you and am into my 7th month now. Neither enbrel or humira helped me so I bit the bullet to go for the infusions. If you have private insurance you should be eligable for " the orencia promise" which pays your co pay for the drug for the first 6 months ( 8 infusions incl. loading dose).

The only precaution I took was to take 2 benydral at home prior to the infusion. I know of many people who have had allergic reactions so figured I would be prepared. My RD said that was fine to do. You have your vitals taken, temp, blood pressure etc then get hooked up while relaxing in recliner and brought an refreshment you choose.

The half hour passses quickly. The first few times I took my husband, I was worried I couldn't drive, but now I even go myself. The gals that administer the drug know me now and we chat most of the time.

Don't fret or be scared, truly it is easy as pie!

Good luck, Marcia
deleted_user
deleted_user
I agree with Bizemomm, just walking in the door of the infusion room for the first time is the hardest part. After that is is really like a support group to visit with as you chat with the other patients. I met a person that seemed to schedule at the same time I did, not planned, so we got to know each other quite well, it was fun. I no longer use the biologics because I've found something else that works much better for me.

I want to give a word of caution about Oriecia, I used it for about 7 months and I ended up getting really sick. My RD says he doesn't think it was the drug, except that I got sicker after each IV, I finally ended up in Intensive Care for 2 weeks fighting for my life. I have done some reading and have found that there are many people who have had a similar reaction, but the numbers are few. So, if you end up with a fever and infection after your infusion don't let the RD shove it off. Research it and make a change. I was on it immediately after it was approved for public use; so we didn't have the opportunity of others having used it. All of the biologics have potential to make you sick, we all know that, but it seems that this one has a bit more potential for that. I used it after many others had failed and it was the only one I hadn't tried.

I am sorry to have said things that may bring you concern, but I want to share it with as many as I can. I almost lost my life, and I don't want that to happen to anyone else if it can be prevented.

My Best To You!
-Wendy