Orencia

Hi Weary, look I've been on orencia forabout 10 months now but I'm about to go off it in 2 weeks time!

I'm not sure about charging, I just had to buy the powder to mix into an infusion from the pharmasist. It cost me $30 in Australia. The infusion clinic was in our local hospital so I don't pay for that service. I could have opted to have a nurse come to my home and give me the infusion but I heard there was often a delay in getting that so I opted to stay with the clinic.

As far as the med went I found it very slow to build up in my system , nearly 5 months before I realised it was working. Nothing like the speed of humira. I only got 80% well on it and it was because of this my rheumy decided to try another go with humira.

I have been really well on it, no infections at all but much more prone to mouth ulcers. It can make me feel fluey after the infusions and sometimes dizzy for a couple of days.

I guess I have mixed feelings for it. Definately worth a try.

The dose is based on weight, the first few doses they weighed me all the time to double check dosages. The pack comes with its own needles, the infusion staff just mix it with saline. It only takes half an hour to infuse and then they wash it through with saline for 10 minutes, then you have to wait an hour to check you're ok. Quite easy really. Main problem for me was waiting for that empty infusion chair!

Good luck with it. I started with 2 other women and they love it, its worked really well for both of them. They have also been really well on it.

Hope this helps, golitho

Yup! I was in quite a bad way when I went on the orencia, I'd had my ovaries removed (they were precancerous) and the lack of estrogen or the surgery or both through me into a massive flare. The humira just stopped working. So they put me on remicade (I was allergic to mouse protein and couldn't breathe) so then they started me on orencia. So I had swollen knees, feet, ankles, wrists, elbows and hips. I was on durogesic pain patches, I tried a few different anti depressents, swallowed codeine for BT pain and just sort of shuffled round in agony. Then about 3 months into orencia, I ended up in a huge flare, my whole body was in agony, on fire, I couldn't bend or straighten anything, including my hands. I'd never had it in my hands and fingers before. I was in hospital for 8 days and pumped full of cortisone. 3 grams of it intravenously.
Around 5 months, the orencia started to work.
So to go from there to being off pain killers, knees were good, elbows, wrists and hips all settled, was just wonderful. My fingers have not settled, they still hurt me all the time plus my feet. Two joints, the big toe plus the little toe as well as most of the extensor tendons are all swollen and hurt me. I sort of hobble around. When I have to be on my feet all day for work, I take masses of pain killers to get me through.
Then a week ago I overdid it so now I'm really suffering with my feet. They just won't settle.
Anyway, sorry its turned into a saga! My rheumy feels the disease is too active for her liking and wants to try another med to see if she can stop the damage.
She is putting me back on humira, if it doesn't work this time she will fail me on it which means I am then able to be elligible for some new meds on the market, namely simponi or cimzia. I think shes got her mind made up on simponi. So thats where I'm headed.
I didn't mean to give you my life story, weary, so sorry about that. Just all builds up some times. I'm actually worried as I start the humira next week and I really don't want to go back to the mess I was in a year ago. How much do we rely on these meds? Its a bit of a concern>
How are your joints in general? Why are you trying orencia? Its a heavier med than the TNF inhibitors, it attacks our T-cells. But interestingly I wasn't more prone to infection on it.
When do you start? Let me know soon, golitho

Hey golitho- so you already had RA and then the precancerous ovaries or surgery made you have a huge flare? Sound like they have not got it under control yet. Was it controlled before the surgery?

My reason for Orencia is just because I want to stop MTX because it affects my social drinking life style.

I have pretty good result with MTX which makes me reluctant but I'm sorry- I am a social butterfly and I feel very deprived when others are sipping cocktails without a care in the world. Just the fact that my doctor says ABSOLUTELY NOT brings out the rebel in my old 50 year old soul.

On the max dose of MTX my feet and hands still hurt every day. Not to the point I can't stand it or need pain meds but enough to remind me you have RA. You are not in perfect health. During the day if I sit too much in my office it's hard to get walking at first and at night it's hard and painful after sitting. So I tried adding Humira. It did not bring me any further relief.

That is why I thought I'd try Orencia alone.

I don't like the possible lung cancer risk as that is what my dad died of. I keep thinking Just watch- you will switch so you can have a drink and then you will get lung cancer and die and say- was a drink really worth all that????

Doesn't it suck that we just can't live our lives without worrying about these things?

Hi Del & welcome!

I think I just typed Orencia into my browser and got the listing for the official website.
The TNF blockers talk of lymphoma risk but the lung cancer scares me.

golitho- thanks so much for your post. I have just been going round and round with this stupid decision. I am absolutely not talking alcoholic levels of drinking but my doctor has me feeling so bad about myself him- he acts like I am! I mean pre-RA I had a martini every night for years! It was a ritual. We put the kids to bed and me & my husband had a cocktail and unwound. On the weekend we would also have wine with dinner and maybe 2 martini's instead of 1. I don't know- is that alcoholism? Now I don't miss not having a drink during the week- I think it was just a bad habit and it was probably better that I gave it up but on the weekend I want to have fun. I feel so restricted. When we get together with friends everyone is drinking wine and having cocktails and noone believes the seriousness of me being on this medication and the fact that I'm not supposed to drink. I think they think I'm trying to get attention when I say I can't and then talk about it.
Down deep I think if I was to just have drinks on the weekend and not to excess I can take MTX too and I'll be OK. I know there has to be plenty of people who do but you just don't hear about them. After all you said you know 2 people. All I can find when I look on the internet is NO NO NO. My doctor....he is dead set against it but I think it is also a personal thing to him that he likes drinking in general.
I think I want to change doctor s but I don't want to feel like I am just looking for one who will say what I want to hear. It still doesn't make it safe....

Hi Golitho. I had 1st infusion last week. All went Ok. I'm in Newcastle , Australia. Planning to travel OZ for a few yrs starting next Feb.
I drink a little on weekends too Weary. only 1 or 2 glasses at most or a mixed drink. My tests are ok - specialist said occasional and little is ok.
take care Del