Extending Time Between Orencia Infusions | Arthritis Information

Hi to all,

I've been well controlled on monthly infusions of Orencia for over a year and a half now.

During this time, I've had to cancel my monthly infusion a couple of times (3) for various, non medical related reasons, extending the infusion period for as long as 7 weeks.

I've noticed no difference in how I feel when I have monthly infusions as opposed to the times when I had to wait almost two months. So..heres where I'm going with this....

y'know how on a Tylenol bottle (for example) it says to take 2 tablets every 4 hours? Or on the jug of laundry detergent it says to add a cup to each wash load? These companies want you to use as much of their product as possible so you'll have to purchase more in less time. Well, I can get by perfectly well with one Tylenol at a time and 1/8 C. of laundry detergent, so as long as I'm feeling fine 2 months out on an Orencia infusion, doesn't it seem logical that I could do just as well every 2 months as once a month on this stuff? I'm going to discuss this with my RD but just wanted to see if anyone else in Rheumyland feels that they could also get along with every other monthly infusions of this drug.

I don't visit as often as I should and wish everyone well.

Good luck with your experiment! I don't have any experience with Orencia but it seems like your body is telling you something. You can always go back on the prescribed dose if it doesn't work out. I've gone six weeks between infusions on two consecutive occasions due to surgeries. I really didn't notice any difference the first time, but when I was overdue the second time (six weeks again), I started to get a few aches. It is so difficult to measure as I was stressed out just knowing I was overdue again and I'm sure that didn't help. If you are in a full remission (I am not), I would certainly ask my doctor about trying to space them out. Even extending the infusions by a week would be uplifting. GOOD LUCK!

Sharon

I make it a point not to miss my monthly infusion, but I have had to for medical reasons. I got switched to Orencia and had one infusion. Nine days after the infusion, I was hospitalized with pneumonia. The next time I got an infusion was 3 months later. The first 2 1/2 months I felt good. The last 2 weeks I was miserable and couldn't wait to get the next dose. It took 2 monthly infusions before I started feeling better.My Rheumy actually suggested I wait a bit between my Humira shots. According to the tests, etc. I am in some kind of remission and he said the only way to find out if I still need the Humira is to slowly stop it. Talk to your dr. We didn't talk any more about what to do after that--like to maybe take the med. every 3 weeks or just stop it altogether. I see him tomorrow. I can't call from work and I had left messages with the nurse and never got any satisfactory answsers and just gave up. I hit the roof when she left me a message "We don't like any of our patients to stop their meds!". I left another message to discuss with the dr as it was his idea! It is a huge waste of money if youn don't need the meds. Good luck. it's been 7 weeks since my last infusion due to a mix up with my insurance coverage. now they are trying to get authorization again. i am in so much pain, i barely feel like writing this reply. i just felt like i should. i have been hurting so bad since a week and a half past time for my infusion. i normally start to feel pretty awful and run down by the end of the 4 weeks, when it's time to get infused.

i am 30 and i have lupus and RA.

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