Checking In...

It has been almost 3 weeks since my last infusion – it’s been quite a ride. I am almost afraid to say these things out loud for fear of jinxing it ( I know that I’ve said this before). However, I have to report that I woke up today feeling - dare I say it  – GOOD! No stiffness or pain in my joints and no nausea!! I am a bit jittery but my energy level feels higher than it has for quite a while.  8 out of 10 I would say!

The only negative is that I think I had a mood swing this morning. I lost my temper over something trivial and had a minor rant. My poor husband. Sometimes I wonder how he can stand me. I got over it pretty quickly and it was only a bit later that I realized that I might have had a mood swing – it’s one of the things I’ve been warned about as a possible side effect on this new medication. Hmmm. Hope it’s not part of the new normal.

The bottom line for today, though, is that at this moment – I feel pretty good!

Seasick? Yeah, a little...

It has been almost 2 weeks since infusion #3. Even though Dr. Neuwelt said that it might be June before I felt any of the positive effects of Benlysta, I do believe that I am starting to feel better. I say these things carefully because I am afraid to jinx my progress.

At this point, the most notable difference is that most of my joint pain is gone. My hands are still stiff on occasion, but the really awful pain I had in my hips is  mostly gone! The worst of the lupus symptoms that are still active right now are the fatigue and pleuritis.

The worst of the side effects from the Benlysta that I have to deal with at this point are nausea, anxiety and headaches. Ron is forever asking me how I am feeling, so this adds to my anxiety. I don't like worrying him, but I think I have to be honest. When I tell him how I really feel, I feel badly that I have to tell him that I'm not 100% yet. I told him that these side effects are my "new normal." I have underplayed my lupus symptoms for years because I don't like to worry him. He's not very patient with any illness - mine, his or our daughters'. He wants to be able to fix things....right NOW!

At any rate, I am looking forward to being in this next remission. I am going to stay positive about this medication because it does seem that it is starting to make a difference.

Confession

I overdid it.

I started to feel better and I got excited and I overdid it. I had an out of town trip to celebrate my birthday and I just wore myself out. We were only in Vegas for a little more than 48 hours, but there were lots of people to see, places to go and things to do. I have to do a better job about respecting my body when it tries to tell me that I have had enough.

A couple days after my third infusion, I had started feeling better. Now I'm not sure if it was just wishful thinking or if the Benlysta was/is starting to work. I would hate to think that I have to start from square 1 again.

My next infusion is not scheduled until May 7th....

Good news to report

 I am almost afraid to say it out loud because I have felt so crappy for so long, BUT I wanted to tell you that I woke up feeling a little odd because I wasn't hurting. My hands and feet were free from pain! I still had some shoulder stiffness and pain across my lower back, but in general, I felt better. So I showered and as I got ready for the day, I did experience a wave of nausea and slight headache. Nothing too bad, though. A little jittery on the way to work so I took an Ativan (this is ok because my husband drives me). The nurse had recommended that I let it dissolve under my tongue - it is effective for me this way. So I got to work and felt ok. I was somewhat buoyed by the outpouring of love when I got to my office - it was my birthday yesterday. There were decorations, flowers, cake, more flowers, cards and gifts for me so that certainly had a positive effect on my mood!

I did "hit the wall" at about 4:15 pm. I'm tired, but not exhausted yet. I hope this is truly the beginning of some good days ahead. I'm ready to be in remission again and promise to drink lots of water, rest and be more mindful of my body's messages to me about slowing down! 

Fingers crossed! Today, my lupus symptoms are present but not as active!

Infusion #3

First of all...Happy Birthday, Meredith!

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

I arrived at the doctor's office 10 minutes early and was whisked right back to the infusion area. There were two other patients there - one was almost finished and the other had started right before me. Before beginning the infusion I reflected on how I was feeling - fatigue level was 7 on a scale of 10 with 10 being unable to get out of bed. My hands were shaky and I was feeling anxious but my blood pressure was 113/79 (pretty good).

Although the veins in my right arm are harder to get, I continue to ask Helen to use my it because
 I am left handed and like to write during the infusion. At this point, the Benlysta wasn't dripping yet.

The magic potion

The infusion itself went well. I received Benadryl and Tylenol beforehand as I did the last couple times. The meds started dripping at 1:40 pm and I was out of the doctor's office and home by about 4 pm. I did doze during the treatment and when I woke up - NO NAUSEA! Yay!

When I got home I ate a little bit and then was so exhausted I went to bed. When I woke up I had a headache and powerful nausea. I also had my first bout of diarrhea - boo... The infusion nurse told me to put the Ativan tablet under my tongue and let it dissolve - she said that would be the quickest way to get the med into my system to deal with the nausea. I did it and it worked. It took about 15 minutes for the nausea to fade. I can only take it every 4 to 6 hours so I hope it lasts. It's making me sleepy so it will be early to bed for me tonight. Fortunately, I will not be going into the office tomorrow so I can continue to rest up.

Reflections on #3 - the infusion area of my doctor's office is in a high traffic area - at least 3 of the women walking back and forth were wearing high heels...click click click...hard to sleep through that. Also, several of the office personnel decided to have a conference right within earshot. And if that wasn't enough, the radio station was set on a jazz station - not my favorite. The lesson here - bring my ipod and earphones when I go back in May. Yes, that's right. I have completed the loading dose and now won't have to go back for infusion #4 until May 7th.

Also, something that surprised me - the RN that is administering the infusions seemed surprised that I am not feeling better yet. I told her that the doctor said it might be June before we know if it's working for me. Then when I was scheduling my next appointment, this woman also also asked me if I was feeling better yet. Maybe they lose track of what number infusion I'm on...it just struck me odd.

I have a big weekend ahead of me so I'm hoping that I will have the energy to get through it.

Tonight my joints are stiff and I am drowsy from the Ativan, but as always, I am hopeful.

Infusion Eve

Happy Easter & Passover

Used up most of my energy making lunch today. Well, truthfully, I think I used up some of today's energy yesterday. I did some shopping at the end of the day in search of goodies for my big birthday coming up and, of course,  did way too much. (I used all my spoons).

Anyway, I thought it might be useful to report how I have been feeling during the last week. I had late days at work til 6 pm or a little after every day but Thursday - that didn't help my energy level. Did have some nausea last week as well. I've also noticed that I am thirsty all the time. This could also be due to Sjogren's Syndrome. I don't think I've mentioned that before.  I am trying to drink more water and green tea. I have noticed some jittery-ness, as well. My hands have even been shaking. I noticed this while chopping vegetables - very weird feeling.

I saw my rheumatologist last Thursday and had a lot to tell him as well as questions to ask. I told him about the nausea so he prescribed Ativan. Hopefully, I won't need it. Questions I asked the doctor - How long before I feel better? Doc says that it may be June before we know if Benlysta is working for me. OK. How long do I stay on Benlysta if it doesn't seem to be working for me? He says that we should give it at least 6 months - maybe more as long as the side effects aren't too bad. I forgot to ask how long I will be on Benlysta after it starts working.

At the moment, I am tired, my hand are stiff and my hip joints are screaming at me. I will try to get a good night's rest before infusion #3 tomorrow. Wish me luck.