Monday, February 22, 2010

Orencia ... Maybe Not For Me

Last week was a very hectic week for me. It started with my first day off last week ... the hot water hose that runs to the washing machine blew.  We had planned on going out of town but opted to stay home.  I'm glad because in the short amount of time to cut the water off, roughly 90 seconds, there was already a half inch of water in the utility room that was running out into the kitchen.  After getting the utility room dried out, buying new hoses and straightening the utility room back up, it was time for bed.
I got up Tuesday and went for my Orencia infusion.  The infusion's usually don't bother me too much, however this one kicked my butt.  I came home and was so tired, I thought I would lay down and take a quick nap.  I slept 5 hours, got up and ate a sandwich, watched some tv and went back to bed at 9 pm.  I slept 12 hours and woke up Wednesday pain free, but so fatigued, I could barely put one foot in front of the other.  I talked to my rheumatologist Tuesday, while getting my infusion, and told him that I had noticed right after an infusion the first 2 weeks I felt great with no pain and little fatigue.  Much better than I ever felt on Enbrel, however, the 3rd week it was wearing off, pain and fatigue were noticeable.  But on the 4th week, I was just hurting all over.  I asked him if this was normal and he said no, but some patients do react to it in this manner.  He suggested that I give it 2-3 more months (this is my 6th month on it) and if after the weather warms up, it is still effecting me the same way, we will change meds.  He said we have a lot of options and there is no sense in hurting half of the month.
I worked my normal 4 days last week (Thursday - Sunday 12 hour shifts) and this week I got moved to the front of the week so I am working Monday - Thursday.  That will be 8 days in a row.  I can make four 12 hour days ok, but I wear down a little bit more as each day passes.  By the 4th day, I am often in pain and fatigued, but can make it.  I don't know what I am going to feel like by the 8th day in a row.
The only thing keeping me going right now is that we have snow coming Friday, but Saturday and Sunday it will be in the mid 50's.  At last, I can get back out and ride.  Randall and I have mapped out a long dual sport ride that we may attempt to ride this weekend.  

9 comments:

Living It, Loving It said...

Is Orencia all you have tried. I have seen an improvement with Humira. Perhaps, that may be a better option. The fatigue is definately the hardest part and you work hard and that hits you hard too. Sometimes, I feel like I am sleep walking through my day, and I take so much over-the-counter pain meds that they seem to have become ineffective. Having pain really sucks, doesn't it? I hope the rest of the week is less exhausting for you.

Take care, Lana

andrew said...

Bummer Terry. You seemed to be doing better with Orencia.

rheumablog said...

What a shame that the Orencia isn't working as well as you hoped it might, Terry. RA is so damned frustrating. I feel for you, having to work so many 12-hour shifts in a row -- that's simply killer. It doesn't leave you very much recovery time from day to day (and I know, as I've done that sort of shiftwork in the past). With the winter waning, perhaps the shift into more spring-like weather will, as your doctor hopes, make a difference. My fingers are crossed.

And have a good time on your ride this weekend. Will you be taking photos?

-Wren

tharr said...

Lana and Andrew, I was on Enbrel before switching to Orencia. Those are the only two I have been on so far. It took me a while to notice the pattern, but the last couple of months I have felt absolutely great the first two weeks after the infusion but not so great the other two weeks. I am not completely giving up on it yet, but like my doctor said, there's no use in hurting two weeks out of the month.

tharr said...

Wren, I was bummed when I first noticed this pattern developing but I kept it to myself until it did it again last month. I would really like to work a 8 hour job but with the money I make and good insurance benefits ... I just can't walk away from a job like that today.

You're so right, "RA is so damned frustrating."

If we go on our long ride, I will definitely take the camera or helmet cam with me.

Laurie Grassi said...

Hi Tharr,

Hope you're able to find a med that works better for you soon. Can't wait to see the pics of the ride! :)

RA Guy said...

Sorry to hear that the Orencia may not be working as well as you hoped...hang in there though, sometimes I get a really good spurt after a particularly bad spell...

tharr said...
This comment has been removed by the author.
tharr said...

Thanks Laurie and RA Guy, I have a good rheumatologist so I feel that he will steer me in the right direction if we need to switch meds. I have still not given up complete hope on the Orencia. It makes me feel so good for the first 2 weeks immediately following an infusion. I really hope it can stretch the feel good time out after the cold weather gets out of here. This has been an unusually cold and wet winter here this year.

Not sure about riding now, when I wrote that we were going to ride, the temps were supposed to be mid to upper 50's, today the forecast high for the weekend is mid 40's. Borderline on me feeling like riding with my RA.