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Posted By : Furrow - 5/7/2016 5:33 PM
Hello everyone, was recently diagnosed with lupus after having RA for a few years. My symptoms are well controlled but my doctor wants me to switch from metehotrexate to an IV Infusion. Doctor has gone over the risks / rewards but it was from very clinical perspective. From my point of view it's a little unnecessary since methotrexate seems to work. But not having to take methotrexate every week might be cool?

Was wondering if any of you guys feel convenience benefits to infusions over weekly treatments? Any one have any positive / negative experiences with infusions?

Posted By : Lynnwood - 5/7/2016 9:15 PM
What kind of infusion? We have Lupies taking Benylsta and IVIG infusions - I think both are monthly but am not certain. Either are generally used when symptoms are NOT well-controlled, so I'm not sure why they would be indicated for you.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : Melissa D. - 5/12/2016 7:12 PM
I received Benlysta for 3 1/2 yrs and recently started IVIG infusions. Benlysta was every 4 weeks for 4 hours. IVIG is every 4 weeks, I am infused over two days, 4 hours each day (out patient) Both have been very beneficial in controlling organ involvement for me. With the IVIG I feel bad for a day or so around the third day after my infusion, after that I have approximately 3 really good weeks then I can tell it's time for my refill.

Hope this info helps.
Melissa
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Posted By : Furrow - 5/28/2017 4:10 PM
Update Post. Since my first post I ended up not taking the infusion. What a mistake that was.

The methotrexate treatment was going very well up until a few months ago. However, after a routine checkup my doctor found that my liver function was low so they had to take me off the methotrexate. Everyone thought this would be fine since my symptoms had regressed to practically zero. They put me on Imuran in the meantime. But not three weeks later I ended up in the hospital with severe internal bleeding and a blood platelet count of 0.

My doctor put me on the infusion after this fiasco. I look back at my first post and realize how naive I was. Haha, the halcyon days of being terrified by the I.V and needle. Not doing everything I could was underestimating the disease. Perhaps if I had just done the infusion I would of saved myself from a long month of hard times and medical bills.

Melissa D. said...
I received Benlysta for 3 1/2 yrs and recently started IVIG infusions. Benlysta was every 4 weeks for 4 hours. IVIG is every 4 weeks, I am infused over two days, 4 hours each day (out patient) Both have been very beneficial in controlling organ involvement for me. With the IVIG I feel bad for a day or so around the third day after my infusion, after that I have approximately 3 really good weeks then I can tell it's time for my refill.

Hope this info helps.
Melissa
thanks for this, now that i'm also on Benlysta I'll watch out for some of these symptoms. Will post my own experiences with Benlysta in a few months too.

Post Edited (Furrow) : 5/28/2017 4:53:14 PM (GMT-6)


Posted By : kayva61014 - 5/30/2017 8:11 PM
Wow! I seriously wish you the best of luck. This disease is completely unpredictable. I hope they can get you back to being well controlled.
Systemic Lupus Erythematosus DX 2017

Posted By : Julie Scheibe - 5/31/2017 2:46 PM
My goodness. We never know how things are going to go sometimes when we make one decision over another. If you had chosen the infusions from the start, would you have questioned your decision at some point because you felt fine? It's funny, but you'll never know. Give yourself a break and concentrate on healing. Good luck to you!

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