Orencia... any opinions? - Arthritis Message Board

Moldova · 04-02-2009, 03:56 PM

Hello everybody!
I would like to know your opinion about this drug: side effects, weight gained, effectivness for you? How long did it take for you to start seeing any good results?

Please help me! Any input is very helpful

Moldova

jennybyc · 04-03-2009, 10:45 AM

Hi again Moldova! (did I tell you I grew up in Chatham, NJ?)

I started Orencia last November and it is great. I've been LOSING weight at about a pound a week at first then a steady but slower amount. Weight loss is a side effect(for once!). I've had very few side effects except I'm tired the first day or so. You start with an IV at 2 week intervals until you've had 3 doses then you go every 4 weeks. I'm due on Wednesday and can't wait. Best RA drug I've been on and I've been on Enbrel, Arava, Humira, Plaquenil, MTX...you name it.

Try it. I hope it works as well for you as it has for me.

gentle hugs...........Jenny

Moldova · 04-03-2009, 04:42 PM

Jenny,
thank you so much, my neighbor, for being always there for me. I really appreciate your input, means a world to me.
I am so happy you are doing so good on it, this is a really sucsess and I hope I will be one of them too.
So far... you wouldn't believe; as you remember they had to stop my Meth since it did not work and was making me so ill!
than 11 weeks on Enbrel and I got mouth, throat fungus as a complication from supressed immune system. They took me off this one too.

I don't feel bad about it since my RA Dr did not recommend me to take it any longer because if I did not get any relieve during 11 weeks, no hope to expect if this will ever work.
So now I have to clear this fungus and than we start Orencia in exact matter you have this done. I will have to travel to NYC for each infusion, but it's OK with me, as long as this will work.
Please let me know how are you doing overall? You mean you have less pain in your body, less stifness? How about energy levels now?
So glad I found you here; seems like you are very helpful to everyone. I try to help too when I can; I understand how people need advice when they in such need...

BEst of wishes to you, Moldova

jennybyc · 04-05-2009, 09:32 AM

Hi Moldova....yes I have much less pain and much less stiffness. the first thing I noticed was that I could see my knuckles again. they had been so swollen for so long I forgotten what they looked like.

My fatigue has gone up and down but I think that is more because I have some other medical problems I have yet to deal with. I have 2 major surgeries ahead of me and the problems/stress are wearing me down.

I hope it works as well for you as it has for me but I look at it this way. Each time a medication doesn't work it tells your doc one more thing about your disease. Each of these new drugs controls or stops a certain chemical in the body that is supposed to be responsible for your problems. As they eliminate the chemicals, they also narrow down what is causing the problem. So it does help in the long run.

good luck............Jenny

Moldova · 04-05-2009, 12:05 PM

Jenny,
thank you sweetie you answered my questions once again...
May I ask you what kind major surgeries are you getting? Spinal? The reason I am asking you is the fact that I had 12 major surgeries in my life time and the last major once were spinal fusions after which I ended up as CP patient on disability...

I may be helpful to you in some way; would gladly do so. And one more thing: sweet heart, you know what I learned? God doesn't give us more than we can handle, doesn't matter how hard this is and how impossible this is... we still keep going no matter what. All depends how we take all these bumps on a roads... you know what I mean? Some people see a glass of water half full and some half empty... Let see our glass always half full!!!

And still keep going and keep smiling, still think that life is very beautiful, is in it?
I suffer so much 24/7 due to my spinal pain; nerve pains in my spine, legs. feet, toes are so bad - no meds can help me. Colon and bladder are not working due to spinal nerve damages... Due to Lupus and RA I got such severe damages to my neck, both elbows and 2 elbow reconstructive surgeries needed to be done... Hands and arms are hardly serve me and give me so much pain especially when I lay down, they painful and numb... I am 53 only... But, guess what? Still could be worse... Some people have it worse, poor souls...
So you and I have to get together and go for a walk on this gourgeous boardwalk here, we will have so much to talk about...

Have a good weekend, honey!