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...
I've been on Orencia for three months now, and I am absolutely worse off than when I started. Of course, I was already having problems, as it seemed my Humira had stopped working. It could be that stopping the Humira is what made me worse. The thing is, now I've developed quite a few nodules (the first one appeared the day after my first shot of Orencia) and they are making my feet hurt even more... trying to squeeze into my shoes (the only shoes that made my feet feel fairly good). On top of that, I seemed to have developed Plantar Faciiatis in my left foot.
I want to go to my grandson's graduation (from boot camp) in early July, but there's no way I will be able to walk very far or stand for very long, so this may ruin everything for me. Just curious if others here have had similar experiences with Orencia and if you think I should throw in the towel on this med and try something else. I have sworn off Prednisone, and Methotrexate messed up my kidneys. My doc suggested Plaquenil, but the possibility of eye damage scares the heck out of me. I just want some relief from all this pain. I wake up every morning dreading the day. This is no way to live. Now, I've even developed a cold, so I feel like total crap. (sigh)
I want to go to my grandson's graduation (from boot camp) in early July, but there's no way I will be able to walk very far or stand for very long, so this may ruin everything for me. Just curious if others here have had similar experiences with Orencia and if you think I should throw in the towel on this med and try something else. I have sworn off Prednisone, and Methotrexate messed up my kidneys. My doc suggested Plaquenil, but the possibility of eye damage scares the heck out of me. I just want some relief from all this pain. I wake up every morning dreading the day. This is no way to live. Now, I've even developed a cold, so I feel like total crap. (sigh)
I don't take Orencia, so I can't comment on that. I do take Plaquenil. From information I've seen from the American Academy of Ophthalmology, the incidence is pretty low, and mostly begins to occur in people who have taken in for more than 5 years. There are thorough procedures for testing to make sure there are no eye changes beginning, and, while damage is not reversible, testing every 6 months should detect the damage at an early stage and the medication can be stopped before there is any severe damage to your vision. I'm not saying you necessarily should try it, but you could read up on it and see if it looks like a more viable option. My mom used it for about 10 years and it helped her a lot. Unfortunately, she did begin to develop the retinal toxicity, so they had to stop the meds, but in the meantime she had 10 years of significantly reduced pain. Sadly, all of the meds we take have some pretty unappetizing side effects......
Here's a link with more info:
http://www.aao.org/publications/eyenet/201105/retina1.cfm
Gawd I know it sucks, but you gotta hang there. I didn't feel anything, I told my rhuemy they were giving me water in my infusion. On the 6th month, sure enough WOW like magic, I could move.
If you give up now, you will never know if it worked. I swear once it does start working......you feel so good again.
I notice a couple on this board gave up after 3 months. DON'T.
I wanted to give you too. My rhuemy wouldn't let, thank goodness. But it sure takes forever.
Hugs. You will make it, your half way now. =)
Lin
Now on it 3 years or is 4... I'm losing my years. Goes so fast now. I'm getting old .........cry
I did use with mtx first 2 years...now I use it alone. Works just as well.
Lin is on infusions and it took HER 6 months
I was on injections for a couple years and it took ME 6 months
these are our humble opinions, but this is not the kind of biologic you can shoot or infuse for 2 or 3 months and cut and run.
other's on here might report their own personal stories of a quicker orencia rebound on one or two monthly infusion or 8 weekly injections, BUT that is not what you are reporting and that is why I am chiming in, so you will not think this is unusual. If I had given up 2 years ago at 2 or 3 months, it would have been too soon.
OK so I too, am also a prednisone refuser. For example, I am not taking it now, and I have been in non medicate mode for 5 months. BUT in a rare one shot occurrence You might want to augment with the dreaded prednisone on a quick week pack just to get get some joy from the boot camp graduation? Or try a new pain med just for the visit as long as you are not doing the driving?
i am sorry you have a cold, that stinks also, it's more than enough to be waiting for a drug to load with everyone telling you patience and then get a secondary infection.
congratulations on the good news with your grand son
Depot
I'm a prednisone girl, meaning side effects & all if the going gets to tough I'll take it. Neuropathy leaves me little choice to be fair.
I wish I had a magic wand as it's so sad when important events are threatened by RA.
Let's all send positive thoughts you make that important event.
The least we can do.
I would go over it with your doctor just to see if there's anything you can try to ease the misery.
Blessings, Sammy