Lupus and…Benlysta Update – I Think It’s Working!

I’ve had seven Benlysta infusions since January.  Once a month I head to the Cancer Center, at a nearby hospital, where they hook up an IV to give me an infusion of a brand new Lupus drug.  Benlysta is the first drug approved by the Food and Drug Administration, for Lupus, in over 50 years.

The side effects were very difficult in the beginning…terrible body aches, fatigue, nausea, joint pain and migraines.  After my first infusion I was in bed for almost a week.  It definitely made me wonder if it was worth it.  Was I really supposed to feel worse after being infused with a drug that was supposed to make me feel better?  Since the side-effects were different after every infusion, I never knew what to expect.

Family and friends asked me every day, “Is it working?  Do you feel better yet?”  I cringed every time I heard these questions because I wanted to say, “Yes,”  but, he truth is, it wasn’t working and I didn’t feel any better. My doctor told me to be patient.  He said I should start to notice a difference at the six month mark.

He was right. I think the turning point came after my 6th infusion, in May.

Until then, I had felt like I was going to collapse around 3:00 every afternoon. The fatigue really set in, at that hour, and my joints were aching…every day I wondered how I would manage to pick the kids up from school. Some days, I was nearly in tears as I parked near school and walked the short distance to the playground where Daniella and Dylan are dismissed.  I have wonderful friends who always offer to pick the kids up for me but, I want to do it…I need to do it.  I just can’t give in to it.  I can’t stay home in bed.

Then one day in May, after infusion #6, I started to notice that I had more energy during the day and my joints weren’t aching quite as much on those 3:00 trips to school.  I was able to run the kids around to all of their activities and even make dinner! I wanted to shout from the rooftops, “I think this might be working,” but, I was afraid I might jinx it.  So, I waited.

I had my 7th infusion on Monday and had just two days of side-effects.  Today, I feel pretty good…and that’s not something I’ve been able to say, very often, in the last year and a half.  There is no cure for Lupus…but, Benlysta helps alleviate some of the symptoms.  I still have bad days but there are fewer of them now.  So, while I’m not ready to shout it from the rooftops, just yet, I am ready to say the words, “I think Benlysta is working for me!”  That’s a huge step for me.  You may hear me shouting it out after infusion #8, in July..stay tuned!

**Click here to read more about how Benlysta helps to alleviate Lupus symptoms**

21 Responses to “Lupus and…Benlysta Update – I Think It’s Working!”

  1. Terrie says:

    Juli: Yeah to “I think Benlysta is working for me!” You have been in my prayers and will continue to be. I know there is no cure, but if you can get to a point of just feeling good, that is a big, big plus!!! Love & Hugs!!! Terrie

    • Brigitte Browney says:

      So Glad it’s starting to work for you! Keeping you in my thoughts and prayers.

    • Gabi says:

      Juli,
      your post sounds hopeful and I hope you are doing “well”!
      My sister has been living with SLE for over 15 years and it is her turn to try out Benlysta. We are trying to get as many information to help us understand how effective the medication is by now – keeping in mind everyBODY is different. My sister lives in Germany and Benlysta has not been administered much at all which is why I’m doing the research over here. Could you post an update on your daily life? With much appreciation ..Gabi

  2. linda ferreri marino says:

    Big shout out to you Juli…keep up the fight..seems like your over the hump…hugs to you…and feel good! Just think of it this way..there is always someone else out there with much worse…that’s how i get through things…count out blessings! have a good one!

  3. Annette says:

    Juli ~ I’m so happy the infusions seem to be easing the joint aches, etc. My sister-in-law was diagnosed with Lupus more than 3 years ago. She has been on dialysis now for almost 2 years. Unfortunately, she isn’t a fighter like you. My prayers for continued relief and better days for you ahead. Many blessings to you, Phil and the kids!

  4. thats great… keep the faith and stay strong.. BTW you look great

  5. Linda Romano says:

    We are all happy to hear that you’re feeling better…I had total confidence that you would! Better days ahead!

  6. Lucy Teresa says:

    So happy to read this. I pray that every day continues to get better for you. Keep the faith.

  7. Susan Williams says:

    That’s so wonderful. I can’t say enough to express how happy I am for you! I admire you so much!

  8. Sheila Schwartz says:

    Juli: I am so glad. Keeping my fingers crossed. Love

  9. Aunt Sally says:

    Juli, sooooo happy to hear that you are feeling better and seeing an improvement. We will keep on praying for you in hopes that all of our prayers are answered!!!!

  10. Aunt Sally says:

    We will keep praying in hopes that you continue to feel better after each infusion. Stay strong!!!

  11. Janice Sielicki (cousin) says:

    Hi Juli, Just read your very good news. I am so happy for you. You are in my eveyday prayers. The medication,prayers and you being so stronge and not giving up is paying off.

  12. Janice Sielicki (cousin) says:

    Hi Juli, Just read your very good news. I am so happy
    for you and your family. You are in my every day prayers. The medication prayers and you being so strong and not giving up is paying off. Looking forward to even more good news. Take care.

  13. Manic Mom says:

    I have had Lupus for 9 years. I’ve wanted to try Benlysta, just worried about the side effects. I’ne been on Methetrexate over 5 years now. I’m happy for you, I will keep you in my thoughts and prayers!

  14. Teresa Marzulla says:

    Oh wow Julie that is great news, you are in my prayers you are a strong beautiful person and I am sure your attitude is helping you as well. Continued good news.

  15. Tara Cooke says:

    Juli, I am just about to have my 5th infusion and haven’t noticed any improvements yet. Your story keeps me hopeful…so glad that you’re noticing a difference!

  16. Niki says:

    Thank You for posting your Benlysta journey. I have been sick with for 10 years now, and have tried MANY treatments either my body has a reaction or they have failed to make anything better. However in a few weeks I will embark on the Benlysta Journey, I know it will be long but we are holding out hope than I will find some help, and your posts are my incentive to hang in there. I do not facebook, but if you have anymore tips to help the infusion process please let me know. The water and the protein seems like great information and could make the difference of feeling like the doctors are trying to off me and just another day of me!

  17. Karen says:

    Hi Juli, I was approved for Benlysta months ago but so afraid to try it. This past week I have been trying to decide if this is the next step. I figure the cancer drugs didnt work, the plaquinel doesnt work, prednisone is always an adjustment. The side effects I have had scared me at times but I keep trying. I have run out of options except for Benlysta. I have a six year old son who takes care of his mom, that is not right. This morning I felt like I had been hit by a bus, s2welling in my fingers to shoulders and barely able to walk because of the hips and knees. Do I want to live my life like this? This was my first thought as I woke up because of the pain all over. This is not how I want to wake up and have my six year old help me up from the bed or a chair. So I decided to look up someone who has tried this drug and you popped up….tears on my face because there you are with hope and a sort of a realistic time frame. Even if it takes six months or even a year I am willing to now try it. Thats nothing compared to the lifetime I envisioned for me. Wish me luck and maybe in six months my son wont be taking care of mom, I will be mom again. Fingers crossed Karen nauert

  18. Gabi says:

    Juli,
    your post sounds hopeful and I hope you are doing “well”!
    My sister has been living with SLE for over 15 years and it is her turn to try out Benlysta. We are trying to get as many information to help us understand how effective the medication is by now – keeping in mind everyBODY is different. My sister lives in Germany and Benlysta has not been administered much at all which is why I’m doing the research over here. Could you post an update on your daily life? With much appreciation ..Gabi

  19. I am glad to hear that you are doing well Juli! I know from your blog that you stay pretty busy, but it is great to see that this medication seems to be working for you. I actually shared with you the infographic that I had put together for Lupus Awareness Month, I hope you got a chance to see it.

Use the Form Below to Leave a Reply



Website: