Benlysta questions

Hi everyone! I hope everyone is having a great day. I have questions for those of you on Benlysta. I received my 4th infusion on Thursday and wanted to know how long your side effects last? When I get home I just hit the bed as they need to give me Benadryl. And I feel generally listless for a couple of days.

I have been getting a ton of headaches and more than a few are migraines. I also have been having diarrhea (Sorry, TMI. I know) It starts the day after and it comes and goes for the whole 4 weeks. Another fun aspect is dry mouth. I have Sjogren's but it is not too bad. Like I needed to take Evoxac a few times a week to help me create saliva. Since starting Benlysta I have to take it every day which is a bummer, because it makes me feel sick to my stomach from too much saliva. And, even without the Evoxac my stomach feels "touchy". Ya know? Slightly queasy, nothing feels good in there but not much vomiting. And I don't know if it is just a matter of a lupus flare (or a flare on top of a flare as my rheumy said that I haven't been out of a flare for years.) but I have been having chills and sweats without fever. I have had them in the past but not for a while so I don't know if it is from the Benlysta or not.

So, aside from the crummy side effects, I am having some good things come from the infusions. A lot of my brain fog has lifted! My short term memory is still crap but I just can't believe how much clearer things are. It is not as good as it used to be, but much better. I think the inflammation is better too. It is kind of hard to tell because we have been having such erratic weather and my fibro has been in hyper drive....or maybe it has always been this way but there has been more lupus in the past. I don't know.

So, I hope it does more for me than this because I don't know if it is worth all the side effects. Maybe the side effects diminish over time. Can you let me know what your experiences are, please?

Thanks for taking the time to read this and for answering!

Take care,

Wendy xx

Hi Wend:)I’ll have my 3rd benlysta treatment Monday…My first one was rough! I was vomiting for several day’s and couldn’t get out of bed for a week. The second time was half the amount side effects so I’m hoping it get easier with every treatment. Unfortunately I’ve had no changes for the better, my joints, bones and breathing continue to decline. .maybe the 3rd time will be the charm for me?!?hope you continue to have improvement:)