So I’ve completed my loading dose of Benlysta, infusion 2 and 3, and it seems to be going well. I have a lot of energy after my treatments and I don’t think I’ve had any Benlysta side effects. After about a week of my treatment, my energy levels do tend to go down, and I start to feel a bit fatigued. This, I’m not sure is related to the Benlysta though. I have been tapering my prednisone and I definitely feel more symptomatic and tired when I lower my dose.
Speaking of symptoms, I developed some fluid retention due to the prednisone a couple of weeks ago. I gained about 15 pounds of fluid in one week. This actually was pretty bad. My knees and ankles were very swollen and painful and my legs felt very heavy. It literally was like walking with weights on my legs. I think a lot of this can be attributed to my salty diet and four hour car ride back and forth from Maryland for Easter weekend. Because of the long drive, my doctor was also concerned about a blood clot in my legs, and I had to have a vascular ultrasound. Luckily, it was negative, and I got started on a diuretic and have been able to lose the water weight!
Prior to the edema, I had developed an upper respiratory infection/ bronchitis after my first treatment, but in my line of work it is kinda unavoidable. I tried to fight it off for a week on my own. Finally I called my doctor and we decided to start antibiotics and hold my Imuran til I felt better. Symptoms started resolving within a couple days, and now I’m feeling almost back to normal.
I’ve had a little bit of random joint pain here and there, but nothing serious. I believe a lot of the pain I had felt in my ankles and knees was actually due to the water retention, and not due to the lupus. I can usually take a Tylenol and it resolves by the end of the day.
I really can’t complain.My bloodwork has improved, lowered double stranded DNA, and improving complement levels. I have been able to slowly start exercising for the past two weeks. So far, so good on the Benlysta.Next treatment is one month away instead of two weeks, so we will see how I feel in the interim. My trip to a Mexico is right before the next treatment, so I hope I will be feeling well on my trip.
I definitely feel like I am being healed, and am starting to truly understand the meaning of the phrase ” wait patiently on the Lord”. It’s more than just waiting. It’s waiting with complete trust and faith. It’s an incredible growing experience, and despite the ups and downs I have had in the past few months, I feel grateful and hopeful.