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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MarleneJ 08/26/2016

Has anyone ever done this?

I got back from our camping vacation on Wednesday afternoon and I usually take the shot in the morning. I got it out and put it on the kitchen table, like I usually do, and unlike what I usually do, which is sit at the table til the prednisone starts working, I walked away to get things done from camping.

Two and a half hours later I wandered back into the kitchen and saw the shot! Very warm by then, it has been in the 30's C every day. I took it and hoped for the best.

I woke up in the night with a 9/10 flare in my right ankle. I had to get my crutches and take extra prednisone. Once the flare was down to 6/10, I realized I had bad flares in the left wrist and the fingers in the right hand. So not a massive fail, but certainly enough to curtail my plans for today (and the weekend church camping retreat?) and getting things ready to go.

I've never done this before, and I attribute it to brain fog. The amount of stupid and massive mistakes I have made this month, tells me that Orencia/Arava is not doing the job I want. I am just glad I caught a big mistake worth over $1000.

Of course, if you left out any other RA shot, and had a dramatic fall off, or not, I would like to hear about that, too!

rackerby 08/27/2016

Did you notice if the fluid in the syringe was cloudy or there were any flakes in it? If not, it was probably OK. A couple of hours unrefrigerated isn't a lot. You can call the Orencia customer hot line at 800-673-6242 and ask the manufacturer's advice, though.

Orencia has a half life of 14 days and if you take it every 7 days, the delay probably didn't make any significant difference in the amount in your system. I don't think that there is a dramatic fall off with any of these drugs. They all take weeks to work out of your system once you discontinue any of them. Don't know how long you've been taking it but give it time. Orencia works differently than other biologics and I found it was the most effective treatment for me by far.

PW39 08/27/2016

Not sure if Orencia is the same but my Humira can be taken up to 14 days after it has been removed from the fridge. As long as it's stays under 77 degree and away from sunlight it should be alright. I have always looked for particals or cloudy medicine before injecting but haven't found anything to be concerned with yet. They also told me not to put it back into the fridge once it has been taken out and warmed up. Sorry to hear about the darn flare ups ruining your plans. Hope you get to feeling better soon.

jolinejoline 08/27/2016

half-life doesn't necessarily apply to therapeutic effects of a drug. it refers to how long it takes for a drug to clear your body. the steady state for orencia is 60 days, which is more significant to the notion of no dramatic fall off, but just beause a drug is in your system doesn't mean it's having any effect, either beneficial or adverse. it is being absorbed, metabolized, interacting with other drugs, and there is a range of concentration where it is doing what you want. the steady state is when there's a balance between new drug entering and spent drug leaving your body. i would think orencia needs to be close to the steady state to be working, since it takes up to 3 months to work.

altoclef 08/27/2016

Call the Orencia hotline and ask.

My guess is that you are probably OK. Two and a half days, no, but a couple of hours, yeah, it can happen. I have just started a new biologic, and one thing that was in the box of crap they sent me was a timer for this. Gotta say, I'm usually in a hurry, so I just stick the syringe in my bra for a few minutes, and when I'm done brushing my teeth and fixing my hair, it's at a good temperature!

californialynn 08/28/2016

I think the flareup was coincidental.

Once I had left my Humira in the car. I called the Humira hotline and they had me give them an estimate of time out of frig to time into frig, the time of day, the temperature and humidity factors....and then they told me, in that specific case, that the drug was ok.

MarleneJ 08/28/2016

Thanks for all the comments, I really appreciate it. I am continuing to have really bad flares, although not as bad as the the ankle flare. But I did see my grandkids move to Hong Kong for 2 years, then went camping for 6 days, home for 1 1/2 days then off to church camp meeting for the weekend. We travel with a trailer so not too much upheaval, but still a lot of stress.

I will call the Orencia hot line. I didn't think of that. I will phone the Canadian number, those toll frees don't usually work in other countries. Something for me to do tomorrow morning!

californialynn 08/29/2016

LOL - and you're blaming poor Orencia for the flare? Sounds to me like you have a lot going on!

MarleneJ 08/29/2016

I phoned the Canadian hotline, and the woman said I should not have taken it if it was not still cool to the touch. It could result in problems, and for sure the flare could have been related to the drug being made ineffective from leaving it out so long. She said, next time, take the next needle, and inform them and they will send me a replacement.

I am in a semi desert, and it is always hot here, even with air conditioning (because hubby has this idea that a high a/c temperature is better than no a/c at all!)

And CALynn, I am always super on the go! I've just totally overcommitted myself for fall - I have to go out 3 nights a week, plus audit the intermediate Greek class until January, when I will be taking the second semester. Add gardening, playing flute, riding bike and stretches and weights, and I keep out of trouble.

Of course, if the meds don't work, that delightful and fun filled schedule gets thrown to the wind! I was just realizing how badly my hands were hurting me as I practiced flute today! But I do have a bit of energy going, I guess that is what counts!

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