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Rheumatoid Arthritis
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Posted 4/14/2008 3:48 PM (GMT 0)
Hi everybody,

Well it seems that Remicade is not doing it for me, and the Dr. wants to try me on Orencia. Is anyone else on this med. or has anyone been on it? They did MRI on both hands and found erosion in my wrist bones and fingers, i imagine this is not uncommon? I remember her telling me my hand xrays from 2 months ago were normal,then they did an MRI 2 weeks ago. When i went for the results consultation she also took out my xrays and was talking about the bone errosion that also showed in the xrays. Weird. Anyways the pain in my hands and thumbs is pretty bad, and I had to quit working. Please let me know if anyone else is on Orencia, and how you have been doing on it. Joy

Posted 4/14/2008 4:56 PM (GMT 0)
I've been on it since last fall....no side effects at all. It took a couple of months to see the benefits and then worked pretty well. Then last couple of months though it's been wearing off in the 3rd week so we just increased to the max dose. I started at 750mgs. The infusion nurse said that most are needing 1000mgs to see the max benefits so we'll see how this works. From the talk in the infusion room, most people aren't getting any side effects or reaction to this one compared to the others. Good luck and keep us updated!
Posted 4/16/2008 3:16 PM (GMT 0)
Thanks Jeannie, always scarey trying something new. I think its the remicade that is causing night sweats, nothing else in my regime could be the culprit, I also have heat spells during the day, but they don't bother me like the nite ones. Maybe i'll be lucky and the Orencia won't have the same effect.
Started PT on my shoulder yesterday, he gave me a couple of excersises to try for the next few weeks and then let him know how I'm doing. Wish me luck. Take care, Joy
Posted 5/5/2014 2:26 AM (GMT 0)
I have had RA for 25 years and have been having a lot of trouble the past several years keeping it under control. I am on Orencia now since January/14 (along with a slew of other meds) and I do not see any change in my RA. Disappointed. I previously tried Cymzia and had awful rashes. I am continually having major night sweats and have been taking zopticlone to stay asleep, because the multiple night sweats were repeatedly waking me during the night. Was feeling exhausted all the time!

I hope the Orencia works for you.
Posted 5/6/2014 12:52 PM (GMT 0)
I am taking orencia and so far it has been helpful but not a lot if that makes sense. I have not had any side effects on it at all.

Hang in there LifeWithRA. I can certainly relate to what you are going through. The last few I years for me as well have been very rough. Hang in there, it will get better.
Posted 5/6/2014 3:24 PM (GMT 0)
Hang in there I took orencia injections and they worked wonderful for me. That being said they have stopped working and I am now going to get my first infusion of rituxan. Orencia worked fast for me. Only lasted for approx 9 months then it stopped working but it was a wonderful ride while it was working. I pray that it works for you and works for a long time. Not my first rodeo with meds that stop working for me. I was on enbrel that has lasted the longest then cinmzia. That lasted about a year. The like I said orencia. I have been battling severe fatigue and pain awaiting for my infusion. Jacked up in steroids and called today to see if I could come in for a booster shot. I hope this works well for you. Like I said I had nothing but good results just didn't last for me.
Hugs
Peggy
Posted 5/6/2014 5:07 PM (GMT 0)
I have taken both orencia injections and orencia infusions.  The injections do nothing--I feel very few effects at all from them.  The infusions are much more effective for me.  Maybe because at the infusion you get teh entire dose at once, but the injections you get a small dose every week.  If you have a choice, I would recommend you try the infusions over the injections.  My rheumy said some of this other patients had the same experience as me.

So far, I like orencia--it's much better for me than the TNF inhibitors.

Best of luck with it!

Elcamino

Posted 5/16/2014 12:25 AM (GMT 0)
I just had my first rituxan infusion yesterday and what a difference it has made for me. I was so weak and in pain and when I finished the infusion I could already tell it was making a difference. Praise the Lord! What a miracle drug for me. I have been bad for about a month. Couldn't get in to see my rheumy due to him being so backed up. But that being said I feel even better today. Praying for more relief as the days rock on. Going back in two weeks for another infusion then hoping for it to last six months... elcamino so glad that the infusions are working for you. Its just a never ending battle to stay ahead of it. Thankful that there are so many choices out there that we can change around with it.
Hugs to you all (softly)
Peggy
Posted 5/16/2014 1:26 AM (GMT 0)
I tried orencia and found it didn't really work for me. My infusion nurse said because of the half life it actually takes 5 months before you get the full effects of it.
It did work for me just not as well as humira. I don't remember any side effects except sometimes I felt really dizzy when they infused me so they slowed down the rate and that worked.
Good luck with it, golitho
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