Benlysta User Reviews

Benlysta - User Reviews

Benlysta User Reviews

Now you can gain knowledge and insight about a drug treatment with Patient Discussions.

Here is a collection of user reviews for the medication Benlysta sorted by most helpful. Patient Discussions FAQs


Comment from: Terri, 55-64 on Treatment for 6 months - 1 year (Patient) Published: May 25

I have been on benlysta since December 2011. I have seen much improvement in my fatigue. I am somewhat dissapointed that my joint pain has not improved more. Since I was diagnosed 6 years ago I figure it will take some time to get my immune system under control. I do have headaches and feel bad for a few days after my infusion, but it is certainly better than feeling bad every day.

Comment from: suzyq, 45-54 on Treatment for 6 months - 1 year (Patient) Published: May 16

I have been on Benlysta since June 2011. The first 4 infusions left me with nausea, severe fatigue and joint pain for several days after the infusion. Now it is just fatigue for about a day. I am seeing overall improvement in the area of fatigue, and brain fog. Slight improvement in joint pain and swelling. I have begun to lower my prednisone and mtx : )

Comment from: Ann3214, 35-44 on Treatment for 1-2 years (Patient) Published: April 23

I've been on Benlysta since June 2011. For 1 week after infusion, I feel like I've been hit by a truck. Severe pain in joints and muscles, headaches, nausea and unbelievable fatigue. Also, I'm having trouble with episodic aphasia and insomnia. It has reduced my oral ulcers, raynaud's and cardiac symptoms, so it is effective. The administration and side effects are very demanding.

Related Reading: aphasia | insomnia

Comment from: drgnfly, 35-44 (Patient) Published: October 05

Ive been suffering with SLE for 20 years and have taken many drugs and this seems to work for me. I have only had six injections and I have noticed improvement in my joints. I have very bad night sweats and fever/chills for several days.

Related Reading: night sweats | fever

Comment from: let'sfindacure, 55-64 on Treatment for less than 1 month (Patient) Published: April 30

On April 6th, 2012, I received my first infusion at UMC Cancer Center in Tucson, AZ. I had some itching and draining down my throat, but at least the needle in my hand didn't hurt too much. Now my Dr.has me take benadryl 25-50 mg before infusions. For about three days after I was depressed but had energy. I thought I must have done to much as I had a lot of feet, hands, knees, neck and shoulder pain. Second infusion the RN realllly hurt my hand, so I am wondering about a dripline being installed. Energy, pain, and depression for several days after treatment. I will give this 3-4 mos to see if I want to continue with it. Thank goodness for insurance so that's a big plus.

Related Reading: Cancer | itching | benadryl

Comment from: Dawn, 45-54 on Treatment for 1-2 years (Patient) Published: January 06

I just finished my 12th month of Benlysta. I have a life back, I do have extreme fatigue the first 24-48 hours after the infusion. I am then pain free and clear headed for about 3 weeks. I go down hill for the last 4-5 days before the next med dose. If I had any complaints about Benlysta it would be I wish it lasted the whole month. 10 years with SLE, first time my blood pressure is normal, my breathing is normal, brain fog has lifted, and my joint pain is minimal. Thank you

Comment from: Lilly, 55-64 on Treatment for 1-2 years (Patient) Published: October 15

Started December2011. I do notice a big difference in fatigue. My joint pain is somewhat better. The drawbacks for me have been insomina and migraine.

Related Reading: migraine

Comment from: GJT, 35-44 on Treatment for less than 1 month (Patient) Published: August 27

I had my first infusion on Friday August 24th. Today, August 27th I feel better than I have in years. Don't get me wrong I did suffer Friday evening and all day Saturday with side effects which included migraine,stomach upset,awful joint pain, and extreme fatigue. However,by Sunday the side effects were lessening and today I feel amazing.The joint pain is there but far less than it was before Benlysta and the fatigue I felt as soon as I woke up in the a.m. has diminished a great deal. This new drug is awesome. I can handle feeling like crap for a day and a half if the rest of the time is this good. Praise God.


Patient Comments are not a substitute for professional medical advice, diagnosis, or treatment. Never delay or disregard seeking professional medical advice from your physician or other qualified health provider because of something you have read on RxList. The opinions expressed in the comments section are of the author and the author alone. RxList does not endorse any specific product, service or treatment.

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