Today is Friday, September 14th. I received my 2nd Benlysta infusion this past Monday, September 10th. Besides being a little tired all week, dare I say it? I feel good! I am coughing and wheezing a little but I’m ok. I have had some energy this week. My pain has been controlled with less narcotics. I have had glimpses of me “pre-lupus” and that gives me hope.
I have tiny, crooked veins so my infusion nurses are extremely talented! Only stuck one time!
I’ve had no side effects from the infusion except for some heavy tiredness the next day and then spells of tiredness the other days of the week. I found that as long as I got a good nap, I was ok. I got more done this week (like laundry) that I have in a month. The only other side effect I have from the Benlysta is a very suppressed appetite. I am never hungry and do not want to eat. I usually have to force myself.
It has been very hard for me to talk about the fact that I feel better. I am scared I’ll jinx it. I think my daughter and husband feel the same way. In fact, my husband and I have fought more this week than I can remember. Hopefully we’re all just adjusting and we’ll be back to our old lovey-dovey selves in no time.
Sometimes I just don’t think he gets what I am going through. This treatment is pretty much my last hope. I’m paranoid. I walk around on eggshells. I beg God constantly for faith and hope and that it will work. If I am not myself this week, I feel like he should understand how much pressure I’m under and how much my body is going through even when I don’t rub it in his face to make sure he sees. My sister and I are pretty much the only ones who know I am lucky to be alive. Why don’t my husband and daughter get it? I could die any time from this disease but it doesn’t seem like they believe it. I just hope my husband still loves me.
Time to stop complaining. I am blessed-Benlysta seems to be doing something good for me. Check out these pictures from before my first infusion on August 27th and this week:
Anyway, I decided to spread out my methotrexate to three days after my Benlysta so I will start taking it Thursday nights except for the treatment I will have September 21 which is a Friday. Shan is having surgery September 24th so I had to bump my infusion to another day.
PHYSICAL REACTIONS TO BENLYSTA THIS WEEK:
- Malar rash improved 80%;
- Have had some increased energy-was able to attend Bible study, help a sick friend pick her kids up from school twice this week & get overdue laundry completed;
- Have only needed one dose of morphine/dilaudid to make it through the day (pain may be improving slightly);
- Mind is much more clear and motivation to do things is returning, though I am being careful to pace myself and rest instead of overdo everything all at once;
- The night of Infusion #2, I thought I noticed a vasculitic rash on my thighs-will look for that again next time and advise doctor if necessary.
- I was able to get up early twice for appointments (one for me, one for Kayla) whereas last week I had to cancel my pulmonology appointment because I was too tired and hurting to get up in time to go.)
I am so grateful to you, Heavenly Father, for giving me HOPE, FAITH, & DETERMINATION when my tank was running low. Until next time…
,
Joy Ali
Joy's Lupus & Benlysta Blog & Other Musings 
I’m so pleasedyfor you Joy; I hope you find well deserved relief you seek with theee treatments. Lord know we aren’t looking a miracle pill or magic wand as they just don’t exist (yet), we’re just looking for that happy medium of management; where the good days outweigh the bad. BTW, love your before & after pics. You look radiant & happy. Keep it up!!!
(Gentle hugs from Chicago)
Youlook awesome !
It is great to hear of your health improvement. You really look great and very happy. May God coantinue to bless you and thank you for your treatment process.
Don’t b scared to jinx yourself, it sounds like u r getting some well deservered good things! U look wonderful! If that’s you’re husband in the picture, and a picture says a 1,000 words…..he looks like he’s trying to understand…. Continued good luck!
JA: Its great to hear about another one of us who are getting better with Benlysta! You look so much better so quickly! Hurray for you!! My improvement was slower, but methodical, steady and continual. I just finished one year of Benlysta and feel like a different much healthier girl than 12 months ago. However, don’t forget for a minute that the old enemy lupus is waiting in the wings at the least lapse in our wisdom, waiting to pounce on us with a flare. Be careful. I do recommend pacing yourself so you don’t undo the improvements your are receiving. Best to you! LA
Thank you. I really needed that reminder. Had a very busy week nursing my husband who had surgery last week. I will definitely remember to pace it. By all means I am not implying with my blog that I am so much better-just noticing little things that indicate this medicine may be the key to help me. I am hopeful!