Help with Lupus-RA Overlap biologics treatment options

[KevDog41]

My wife has been diagnosed by her rheumatologist with lupus-RA overlap. Already done several rounds of steroids and she is on Plaquenil. The doc prescribed weekly injections of Orencia; after the first shot she had a bad headache, fatigue and flu-like symptoms for several days. She is scared to take the next shot. The doctor says Orencia is her first pick of a drug to try, but could prescribe Actemra or Benlysta instead. She asked to choose between continuing with the Orencia injections weekly, switching to Orencia monthly infusion, weekly Actemra, or weekly Benlysta. Does anyone have any recommendations or thoughts on my initial reaction to Orencia? Will the side effects persist after multiple injections?

[lupus-support1 Administrator]

Hi & welcome!

I am sorry to read this about your wife and it’s a worrying time, but don’t despair.

Orencia or Abatacept is a DMARD and side effects are common until the body gets used to the drug. This is not unusual.

No one can advise you as to what to do. If it were me. I would continue with Orencia for a month to see whether the side-effects abated, on the basis that all these drugs have side effects.

Infusion

Abatacept (Orencia). It attaches to and blocks the action of cells that promote inflammation. You'll get an infusion once every 2 weeks to start. Then you'll get the drug once a month. Each infusion takes 30 minutes. You may not see the full effects of abatacept until you've been on it for 3 months or longer.

It means having to travel to the hospital for the infusion.

As I said, this is a decision your wife must make. All drugs have side effects but if there’s no quality of life, an alternative should be given.

If your wife would like to talk to me, please contact me. She needs to feel she has some control over her life rather than her disease is in control, even it may not feel like it at this time.

With good wishes,

Ros

[KevDog41 in reply to lupus-support1]

Hi Ros! Thank you so much for your support. My wife and I read your response and it's very helpful insight and made us more hopeful. Do you have any insight or specific places you can point us to that describe how the body gets used to the drug and side effects get easier over time? I understand everyone's body is different. The doc recommended Claritan and Tylenol when the drug is taken to limit side effects. We are inclined to stick with Orencia but debating the weekly vs monthly format. Seems to us that going through the side effects once per month vs 4x per months is more desirable. If you have any resources for people like her to figure out how to compare and make a decision that would be so amazing. Thanks again!

[lupus-support1 Administrator in reply to KevDog41]

There may be some studies regarding side-effects of drugs. However, I don't think you will be any the wiser or find them helpful because every patient is different. If you find X number of patients got used to Y drug in 2-3 weeks, but you don't . . . !

The other point to make is this: if you have 4 weeks in one (infusion), that may be very different from having x1 weekly (for 4 weeks) in terms of side effects.

Did your rheumatologist explain what is meant by an infusion because it is very different from a nurse administering an injection?

To set your mind at ease, I have had many Steroid & Rituximab infusions, so I have been through the experience.

The infusion has to be done in a hospital setting. Your wife will have her vital signs checked before, throughout and after the infusion, which will take approximately 30 minutes or so - although it's always longer when you are the patient, so be prepared for a wait. You will also have to stay for a while to make sure your wife hasn't had an adverse reaction & report to your GP any symptoms or after effects. Please note: serious side effects are RARE & the drug would not recommended. You can trust your rheumatologist!

It is NOT for me to advise you in any way as I am not a medical doctor.

You can always start with the injections & then transfer to an infusion later? This is an option but obviously, not half way through the injections!!!! 😀

Orencia (abatacept) is used to alleviate symptoms of rheumatoid arthritis (RA) & is a very successful drug.

If your wife would like to talk, she can find me here.

With good wishes,

Ros

[Poshcards]

I too have this diagnosis amondt other overlaps but never Ben offered these drugs!

[KevDog41 in reply to Poshcards]

Good luck Poshcards. Find a good Rheumatlogist and ask them!