Does anyone else start to feel awful the week before an infusion?

[paddywack]

I'm still every 8 weeks on Inflectra.

My next infusion is Tuesday.
My joints have been hurting badly the past week.
The fatigue ramped way up, and I'm having headaches.

I have fibromyalgia, too, and I get migraines.
Stress seems to make everything worse, and two of my kids graduated this month plus my employer made us come back to the office.

It's always such a pain trying to figure out what's causing what symptom. Maybe it's just me not handling stress very well.

The joint pain could be sero-negative spondyloarthritis, but I'm already taking a biologic for the crohn's, so I don't know how else that could be treated.
I try to ignore it and avoid NSAIDs as much as possible.

Maybe the medication isn't lasting as long?
Or maybe I'm just old and tired

 

[Jo-mom]

Hi, have you had a blood test to determine your Inflectra levels. Sounds to me that it might need adjusting - perhaps shorter intervals. Even with stress and age put into the mix, you should be feeling fine throughout, so I'm thinking you might need to check your levels.

 

[paddywack]

Hi, have you had a blood test to determine your Inflectra levels. Sounds to me that it might need adjusting - perhaps shorter intervals. Even with stress and age put into the mix, you should be feeling fine throughout, so I'm thinking you might need to check your levels.

My doctor checks levels at least once a year, and they're always ok. I'll send a message to see if he wants labs drawn before the infusion Tuesday.

Thanks

 

[Jo-mom]

Yes... my son too also gets regular levels check but they have dropped prior to the scheduled testing and his intervals became shorter as a result. He too started feeling out of sorts before his infusion date. Good luck!

 

[my little penguin]

Sometimes you just need higher dose and shorter infusion windows
My kiddo never made it to 8 weeks for remicade
He was at 6 weeks at 7.5 mg/kg
Second see a rheumatologist for the arthritis
You do not want joint damage
Sometimes they switch biologics
Other times increase dose /frequency
Others add methotrexate to boost things
Nsaids can be used for arthritis in crohns patients as a last resort after all other options above have been tried
Cox-2 inhibitors are types of nsaids that protect the stomach
Celebrex is one of them
But everyone is different
See a rheumatologist first
Then they can up your biologics
Or add methotrexate
Also biolgics tend to stop working eventually in my child experience
So increasing frequency/dose helps with that

 

[paddywack]

Sometimes you just need higher dose and shorter infusion windows
My kiddo never made it to 8 weeks for remicade
He was at 6 weeks at 7.5 mg/kg
Second see a rheumatologist for the arthritis
You do not want joint damage
Sometimes they switch biologics
Other times increase dose /frequency
Others add methotrexate to boost things
Nsaids can be used for arthritis in crohns patients as a last resort after all other options above have been tried
Cox-2 inhibitors are types of nsaids that protect the stomach
Celebrex is one of them
But everyone is different
See a rheumatologist first
Then they can up your biologics
Or add methotrexate
Also biolgics tend to stop working eventually in my child experience
So increasing frequency/dose helps with that

Thank you
I'm pretty sure you're the one who told me about sero-negative spondyloarthritis?
I'll have to find a rheumatologist who believes in it.

The one I've seen before gets hung up on the fibro and tells me to do tai chi and water therapy. I live in Minnesota, so water therapy isn't easy half the year.

I need to lose weight, too. But when the fatigue hits?

 

[Scipio]

I'm still every 8 weeks on Inflectra.

My next infusion is Tuesday.
My joints have been hurting badly the past week.
The fatigue ramped way up, and I'm having headaches.

I start to feel worse 1 to 2 weeks before my next Stelara dose is due (8 week schedule). I've had the levels checked right before the injection and there is still adequate (according to published targets) drug present in my blood. but nevertheless I do have increased bouts of lower right abdominal pain leading up to the injection date.