Monthly Archives: March 2015

First Benlysta Treatment

On Friday, I had my first treatment of Benlysta. I’ll admit I was very apprehensive. I had done a lot of researching of the drug online and read a lot of different reviews and blogs on how different people tolerated the drug. Some people said they instantly felt more energy, others said no change, but the ones that concerned me were the reports of being sick for days with nausea weakness, headaches.

I scheduled my appointment for a Friday with the hopes that if I did end up feeling horrible, I’d still have the weekend to rest and wouldn’t have to miss work. The other thing I was anxious about was driving myself there. I live an hour and half away from my doctors office/ infusion center and my husband had a presentation that morning and would be unable to take me. And to make matters worse, we were expecting a few inches of snow.

Well, I was pleasantly surprised with my experience. When I arrived I was seated in a reclining chair, which had a nearly full recline so I could lay down and sleep. The center had snacks and tea/coffee. They also provided pillows and heated blankets. The nurses were very friendly and made me feel comfortable and put me at ease.

They started with vitals, hooked me up to an IV, drew some blood, and then started running the drug. The medication ran for an hour and was pretty uneventful. I didn’t feel any pain at the IV site, only a little cold. I didn’t experience any side affects. After the drug was done running, they ran normal saline for about an hour and half to monitor me for any reactions. Basically I just slept and watched TV the whole time.

This weekend wasn’t too bad either. I had a lot of energy but made sure not to over exert myself and get some rest.I’ve had a bit of a cough, but nothing major. So, so far, so good.

Despite all my anxiety, everything worked out well for me. I’m really excited to see what’s going to happen with this drug and feel hope that I may go into remission. I have my next infusion next week and we will see how it goes. I will keep you posted. Lots of prayers as I go on this journey!

Winter Break

So I know I haven’t posted in a few months. It got busy with the holidays and then this cold NY winter has made me very unmotivated. But the weather is going to start warming up, and so am I.

This past month I was diagnosed with pleuritis for the second time . I developed shortness of breath and some chest tightness which progressively worsened over a couple weeks. I had to do some tests to rule out any blood clots in my lung and, thankfully none were found.

But now I am back on steroids, and boy do I feel it. Insomnia. Dry mouth.Agitation. Weight gain. And my lovely moon face. Now usually I become pretty discouraged about this, but I am going to try and be optimistic here. I’ve got a vacation planned to go to a Mexico in May, and I am going to try super hard to maintain my weight. I am looking into different diets not only to manage weight but also fluid retention. If you have any suggestions, please feel free to share.

I think my biggest concern is how people will see. Most people who know me, know I love to eat. I worry about them judging me, thinking that my round face and tummy is a product of my lack of self control. I worry about people at work noticing and being curious. Most times I can hide my illness, but right now I can’t . I feel embarrassed, and I worry about having to explain myself, which personally is worse because the last thing I want is for my job to know I have a chronic illness.

I see my doctor tomorrow and we are going to discuss taking Benlysta, the IV infusion drug. I am definitely apprehensive, but after months of worsening bloodwork, and this little flare, I’m thinking maybe it’s time. I will keep you posted and I ask for prayers as I get this figured out. I do believe that a God is the Master Healer, and this is completely in His hands.