My doc wanted me to do infusions but I refused because my kidney functions are well( THANK GOD) but I'm in pain all the time. The plaquenil brings my pain level down from a 12 to an 8. I just have reservations about taking all these meds. To answer your question, "No", but I PRAY THAT YOU ALL YOUR NUMBERS WILL BE GREAT and you won't need to be having infusions. Just do your own research, be your own advocate. Stay FIGHTING MY WARRIOR SISTER.

@A MyLupusTeam Member Sorry I just saw this! I have had almost a year of infusions and no real side effects at all. Occasionally on the day I get it, I'm a little tired and take a nap but nothing else!

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A MyLupus...

Thank you for your insights Kathleen! I will keep your pointers in mind. I try to drink water throughout the day and carry my water with me. I walk as often as I can and alternate cycling on a stationary bike along with stretching but I definitely could be more consistent with the stretching. I have my first infusion of saphnelo this Thursday and am a bit apprehensive. I also in the past have tried injections of Enbrel but had an allergic reaction and had to stop. Hugs to you ❤️

I have found daily stretching exercise helps immensely. I can't stress it enough! If I could put weight on my wrists, I'd do yoga. Getting down on the floor and then back up is near impossible. Knees and wrists are my biggest problem areas. I have a 2" thick mat that I put on a spare bed to do stretching. 20 minutes at 9am and 4pm. It's as if the stretching wards off the aches the next day. If I miss a day, I ache the next.
Plaquenil helped with the swelling when I went off of prednisone. I still take it, but it does nothing for pain. Methotrexate is the only med that has made a big difference in joint pain.
Water. I drink 6 ounces *every* hour, from 8am to 7pm. That's 72 ounces and enough for the kidneys. If I'm working in my yard, I up it 12 ounces. I think water makes a difference in joint pain, but it might be coincidental.

Thank you for your response Kathleen. I understand the issues with prednisone which is why I am on a low-dose and going to start cutting back when they start the saphnelo. I have issues with osteoporosis as well. None of the other meds you mentioned have helped me. I’ve tried them all (methotrexate, plaquenil, sulfasalazine) in past years and basically have not been on anything regular for a number if years until a year ago when I had this huge flareup. Azathioprene caused problems with my blood and lymphocytes and wasn’t helping me so that’s where the saphnelo comes in. I’m sure it is super expensive. I have four years left before Medicare age so right now I have a private insurance that is covering this thank goodness. You are saying it takes 6 to 12 months to see an improvement? My doctor told me about 3 months. I guess I will find out. The problem with me is when the prednisone starts to be decreased, joint pains start to come back