Benlysta Side Effects
What to expect with Benlysta
Benlysta, a new drug about to be approved by the FDA, is the first new drug for lupus in over five decades. The excitement over Benlysta is tempered by the study’s mixed reviews about side effects. There is also a question as to the efficacy of the drug compared to steroid use, the traditional treatment for lupus.
Personally, I find all of this rather amusing, as I have been on Benlysta for over six years. Over 80 months, actually. I’ll have my 7 year anniversary in February of 2011. I have had such a complete healing that either I’m one in a million, or the study was somehow cocked at a strange angle and “healing” has only one meaning: absence of symptoms.
Steroids mask symptoms. They also deplete the calcium in your bones. I have found that Benlysta (I take it under the name LymphostatB in a Phase II study) has allowed my body to heal. I mean, really heal! I am strong and healthy, not plied with prednazone so that symptoms go into the background. My lupus went away, albeit slowly, but from the inside out. This drug is nothing short of a revolution.
Do I have side effects from the drug? Only on the one to two days after I take it. The infusion causes me fatigue and aching bones. During this time, I head for bed early and might be seen taking a nap during the day. Small price to pay for keeping those B cells in their place. Runaway B cells have caused complete havoc in my system and given me lupus. Keep them down, and my body repaired itself.
This is where I was in 2004 when I took my first infusion: Rashes all over my body, a peculiar shawl shaped rash on my back, hives, yeast rashes on my face, giant erdicadia popping up on my head and face, extreme sun sensitivity–sun burn from florescent lights, sunburn from sitting near a window, Reynaud’s Syndrome–tingling fingers, swollen and painful fingertips, miocitus in my arm muscles–unable to lift my arms past my chest, arthritis in my joints, aching bones, fatigue syndrome, esophagal spasms, difficulty swallowing, sudden fevers, uncontrollable muscle twitching in my legs and arms, neuropathy on the bottom of my feet, low white cell count, low red cell count. Steroids helped the rashes, but didn’t touch the rest. I’m happy to report that everything, including my blood work, is back to normal. Imagine that.
It took about 3 months to know for sure I was on the real drug and not the placebo. First indication was the lessening of fatigue. The rashes melted away. My bone and joint aches seemed to be less. Holy smokes, was I excited. It took three years for my blood work to turn around, but even my sun sensitivity left. I simply got better and better. Then better yet.
I doubt you could say that about steroids. I have had no other side effects from Benlysta. No depression–hell, I feel so great, how could I be depressed?
I know there are many different kinds of lupus and no two lupus sufferers have the same version of the disease, but if your doctor tells you that you’ve got too many B cells, consider this drug!
When I started Benlysta (LumphostatB), they gave me an infusion every two weeks, then after three months had infusions once a month. When I entered the once a month phase, I was feeling better the week after I had the infusion, but then I would slowly get lower and lower as I approached that 4th week. Then I’d get the infusion and I’d feel better again.
I would suggest doing it every two weeks for 3 months, then every 3 weeks for a couple of months, then graduate to every 4 weeks. If I weren’t still in the study, I’d only have to take an infusion every 7 or 8 weeks, but I can’t because the study makes me have it every 4 weeks. It’s really too much medication, but it doesn’t seem to be causing any harm.
How does it feel to be a guinea pig? Strange, but wonderful. If I hadn’t participated in the study, I would probably be in bed right now. I’m glad I let them study me. I now feel I owe it to the scientists who discovered Benlysta to stay in the study as long as they run it. I also owe it to the lupus community. We were all on a sinking ship. Now my boat’s riding high in the water! And I hope if you are a lupus sufferer, you’ll soon join me. What a party we’ll have!
