Benlysta #36-I’m Back!

Today I had my 36th Benlysta Infusion for Lupus. I’ve spent the last couple of years fighting to stay alive and I give a lot of credit to Benlysta for keeping me around. I just got out of the hospital so I don’t have strength to write much at the moment, but I’ve chosen to recommit myself to this Benlysta and Lupus blog in hopes of helping others navigate the rocky seas of autoimmune disease I’ve battled in a little lifeboat for the past 18 years. Check back soon for detailed updates on exactly what Benlysta has been doing for me as well as side effects or setbacks along the way. We’re all only human so setbacks happen to the best of us despite our hardest efforts. Here are a couple pics of me getting my Benlysta today. I was SO ready for it after having to skip last month due to being hospitalized for Pyelonephritis!



Love,            Joy


Awaiting Benlysta #15

I haven’t updated my blog here in some time. I was going to apologize but realized that Benlysta has been helping me to live like a normal person 15-20 days of the month nowadays so I have been too busy living life while I can! I have been able to bathe myself most days and live like a normal person about 45% of the time I would say. I am getting relief from Benlysta 45% of the time; about 4 good hours a day 15-20 days a month. Hell, I’ll gladly take that. It beats being bedridden like before I started Benlysta. Blue Cross insurance doled out $22,000 for a custom power wheelchairfor . It was demanded by my Occupational and Physical Therapist, as well as my Rheumatologist.   That was February.

Now I am walking on my own except for bad days or days when I’ve used up my 4 good hours and still have to do stuff.

My kidneys failed in May, requiring a month-long hospital stay. One way we know Benlysta is working is that we’ve been able to wean me off prednisone completely! However, when we finally took me off if it, my kidneys just decided to stop working. My creatinine went apeshit and I was in full kidney failure. My Rheumy caught it and admitted me immediately after testing my cortisol that came back ridicuously low.  A month in the hospital and it’s all better thanks to my new steroid: hydrocortisone. Well I am driftng to sleep so I will finish this post and add photos later. Hugs!

Benlysta Infusions #5 & #6

I survived the holidays without a hospital admission. First time in at least 2 years. Maybe 4!
On infusion day for #5, I pretty much konked out and slept for a few days. Then I awoke that Thursday with energy in my legs and I cleaned my shower, cleaned my bathroom, cleaned my bedroom & dusted the ceiling fans and baseboards. That is what I call my Benlysta Surge. It wears off because I usually take advantage of this energy and make myself sore. But it’s ok. By the next day I was ok. Not great, not awful, but ok. And I stayed that way til #6. We did not stress ourselves out about Christmas shopping this year. As a jeweler and jewelry store co-owner, my husband worked insane retail hours. He developed a cold from wearing himself out. This is the first time in our marriage that he is sick and I’m fine. I caught the cold but it left in a day. Go figure. I am just as puzzled as you. Also, my best friend Maria moved back from Florida and helped me decorate for Christmas, wrap presents and set up the tree. Having her back just comforts me.

Me and my best friend, Maria-my merry Christmas elf helper!

Me and my best friend, Maria-my merry Christmas elf helper!

So I stayed “ok” and had my 6th infusion in December. It made me terribly sick. It gave me diarreah for four days. Not the painful kind where it burns your bootie hole eventually (sorry if TMI), just very high-pressured elimination of fluid. I was drinking tons of fluids because I couldn’t eat (Benlysta does take my appetite away) and I was afraid of being dehydrated. My husband brought me blue gatoroade and my potty was green after going diarreah. It was almost like peeing A LOT out of my hiney. Sorry if this is gross but I want my Benlysta friends to know what to expect if it happens to them. I also got a terrible migraine from this infusion, but Karen (Benlysta Buddies) had once suggested taking tylenol and benadryl at the same time and it worked like magic.

At present, I am sleeping til 1 or 2 in the afternoon (difficult to wake up on my own) and then feeling ok enough to do things if I need to. There have still been some days when I stayed in bed all day, but this feeling of being ok is slowly becoming more frequent. (Thought I admit, my “ok” feels like a normal HEALTHY person’s worst day.) If I exert myself then I have setbacks. For instance just taking a shower is still hard for me. So I bought a yoga DVD and was given a treadmill for Christmas. I try to walk at least a mile and a half or do my yoga at least once a day. I have lost almost one pant size in a week. (Only walked twice, the rest was yoga!) Even when I didn’t feel like exercising, I still put the DVD on, lit a candle, sat on my mat and just watched the video. It is helping with stress relief.

I am hoping to get more energy and less large joint pain out of #7. I would also like to stop needing to sleep until 1 or 2 because it makes me feel lazy.

I will definitely update you once I know how #7 goes, but I hear that #8 often starts to bring measurable relief. I have had glimpses of normal and certainly appreciate being just “ok” vs. feeling like the Texas Chainsaw massacre guy got a hold of me while I was dragging a bus down the road with my ankles.

Best part of #6 is I was able to enjoy the Christmas holiday with my son, Jacob, who lives with his dad and visits me on holidays. Last time he came in July, I was in the hospital almost the entire time.

Me and my son, Jacob, on the Christmas lights hayride

Me and my son, Jacob, on the Christmas lights hayride

Me and my daughter, Kayla, on the Christmas lights hayride

Me and my daughter, Kayla, on the Christmas lights hayride

"Queen" Delilah enjoying the freshly decorated Christmas living room

“Queen” Delilah enjoying the freshly decorated Christmas living room

I think one of the most important benefits I am getting from Benlysta is the lack of a bad flare while I am still down to 10mg of prednisone (down from 60mg daily) and maintaining there. I have a slight wheeze and some pleuritic pain, but I think my pericarditis is still under control. Before Benlysta, I couldn’t take less than 30 mg of prednisone without the pericarditis flaring up. If this is the ONLY benefit I receive from Benlysta, I will be grateful. Prednisone is the devil.

As always, I will keep you posted.

Love,<br /><br />

ER visit Tuesday 11/20/12

Had to go to the ER at 2:30 a.m this morning because I couldn’t breathe well & it hurt to try. Got solumedrol IV & CT scan just showed pleurisy & inflammation. Have to see a pulmonologist now.


But Benlysta has been helping all other lupus symptoms since Friday afternoon. (It’s Tuesday!). Praying God will heal my lungs & make me keep getting better & better.

Benlysta # 4 and 1st day of #5

I really thought I already blogged about #4 because my sweet sister drove 2 hours each way with my “spunky” nephew  just to come take me 20 minutes from my house to my 4th infusion at Duke. My darling husband just simply couldn’t get away for this one and I really needed a ride home or I wouldn’t be able to get my infusion. They tolerated a lot. She waited 3-4 hours with an almost 2 year old for me to get my drip and ran around the grand halls of the Duke Clinic trying to fill my prescriptions. Mission accomplished. All with my nephew, Luke, hanging on to her back in a papoose. Mind you, my sister is like 4 ft 9 and 90 pounds and Luke is already longer than half her body.

Lori and Luke

Anywho, I can’t remember much about October except that family visited on the 17th – 19th and I was able to walk my sweet cousin around Duke and UNC to check out campuses for research programs. Here we are. I love this smart, sweet, beautiful young lady, Sonia:

Sweet Sonia and Me

I’ll be completely honest, people. I don’t remember much about the month of October or my #4 infusion except that my lupus was going nuts almost constantly. I felt like hell and I lost 9 pounds. I was crying to God 2 nights before #5 asking Him to either heal me or take me but one way or the other, do something, because I couldn’t take it anymore. I didn’t cook the entire month of October. I didn’t clean anything. I handwashed socks and undies for my husband once because our washing machine broke and I was too exhausted to deal with it. I couldn’t enjoy Halloween with my family because I had my port placement surgery that morning. That was fun. Not.

Port Placement Bruising. I was a patient for Halloween.

My precious angel of a husband waiting with me, always there for me.

Getting ready for port placement surgery. AWAKE surgery might I add!

But time moves on, and the pain is nothing compared to the blessings in my life. My cousin, Debra, who grew up with me and is a sister to me, as well as her sister, my other cousin, Teresa, came to visit with Teresa’s precious baby boy Zachary. It was so wonderful to see them. Lupus is a lonely disease. It was even more wonderful to hold a wee one and comfort him to sleep and feel like I actually accomplished something to help someone when his tummy was hurting. I so enjoyed our visit, Debbie and Teresa! And I got into Jamberry Nails which have cheered my spirits entirely. They are sooo easy to apply, they don’t chip and last for at least 3 weeks. I love mine. And it’s about 1/4th the price of getting your nails done somewhere. Everywhere I go, everyone loves my nails. When I feel better, I will start selling them too.

Blue Damask under ‘Sophisticated’ on website above.

Silver tip over Silver & Red under ‘French Tips’ on website above.

A week or so before Halloween, I did have the strength to go with my husband and his sister, my sister-in-law, Mona, to the haunted farm in Clayton. Boy it is creepy, but we had a good time. There were some things that were very hard for me to do like climbing ladders and sliding down tubes, etc. but I lived and enjoyed every second of it. Here we are:

Shan and me at the haunted farm in Clayton, NC


Roasting Marshmellows
Shan and I at the haunted farm. Burrr!

My husband and I celebrated our 6th wedding anniversary on November 9th. I was sick. I was broke (social security is making me wait for a hearing, BASTARDS), but he loved me anyway. He spoiled me with so many sweet gifts and shopping.                                                                                                   

One of my favorite gifts

So all in all, #4 didn’t really do a whole lot for me. The few things I did, journeys I took, I guess I would call miracles because I wasn’t walking a month ago. I just wish I would get better faster. Which leads me to Benlysta #5 and the first time I had my new port accessed. I will fill you in on results next month but here’s what happened at my infusion today. I am praying for better, stronger, healthier days. And praying to refocus my faith on God and not Benlysta, or any other drug.


Watch My Port Get Accessed for the First Time. As My Sweet Cindy sings her jingle, “Plug it in, plug it in.” tee hee


The Night Before Benlysta #4

I can tell you that going from having a dose of Benlysta every two weeks to switching to once a month was VERY HARD for me. Honestly, it has been horrible. I felt okay for about 2 weeks after getting my Benlysta but the last 2 weeks have been hell. I have been in terrible pain and have major leg weakness. My left hip hurts so much that walking makes me wince and stairs are excruciating.

I have been really confused about when I’m supposed to take my Methotrexate and I skipped it since starting Benlysta. I finally took it last Sunday and it made me sick all week too. I will check with the doctor and nurses tomorrow about that to make sure I take it at the proper times from now on.

It sucked because my husband whisked me away to Myrtle Beach to get away before his busy Christmas season started. I was sick the whole time. We really couldn’t enjoy anything because of me. I slept until 1 and was too nauseated to do much. And on top of that, I come home to a letter from Social Security denying my request for reconsideration for disability benefits. Rotten bastards. (Sorry for the language.) I fight with all I’ve got just to live and function every day and those bastards deny me again and say I am capable of working a full time job?! It’s a shame. Those jerks should have to answer to someone.

Something made my weight balloon to 196-200 pounds and I really hope it’s not Benlysta. I don’t see how it could be since Benny makes me not want to eat. Oh well. It’s probably still the prednisone. I am now down to 20 mg a day (which could be another reason I’m flaring and hurting like hell). Getting well is most important and then I will focus on losing weight. I don’t even eat. I force myself to eat a banana or pop tart to take pills with for lunch and I pick at whatever my hubby brings me for dinner. I haven’t been able to eat an entire meal in at least a month. I tried last night and puked it up in the yard by the time we got home.

Me in Myrtle Beach at my highest weight ever

Had a lot of fun despite my pain at Wonderworks in Myrtle Beach (I slept til 1 the next day to pay for the 2 hours of fun this day!)

Anyway, here’s some pics from Benlysta # 3.

My veins are tricky

He’s always there for me

My husband Shan thinking while I get infused. Isn’t he gorgeous?

Benadryl and infusion makes me sleepy

Getting Infusion

Oh well. Such is life with Lupus. Let me leave you with this picture I made in reference to my morphine and dilaudid prescriptions. And who can’t smile at an ostrich?

Joy Ali

Benlysta Infusion #2

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.


  • 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