Benlysta infusion #4 and stuff.

I meant to write last week but I was too tired and I couldn’t wrap my head around speaking decent English. Apologies.

Anyhoo, I did in fact receive my 4th infusion on Tuesday. I sat in the office for almost 2 hours thinking I might not get it. There was a problem with a couple pharmacies that deliver the infusions to the clinic. Even though my first 3 infusions went smoothly, there was some sudden issue with the pharmacies having incorrect insurance information. All the sudden they wanted an $1100 copay per infusion. My family and I were on the phone with these companies trying to figure out what the problem was for the whole month that went by in between my infusions, and nobody working on the other end corrected the information in the computer even though it had been given to them over the phone, so they were trying to get approval for my treatment from an insurance I didn’t have. I found out while I was at the doctor that this was what the problem was, because the RN was the one who finally got to the bottom of it. He fixed it, and pulled a few strings, and I was able to get the treatment while I was there instead of having to come back another time. So hopefully, I won’t ever have to deal with that again.

I hope all of that wasn’t too jumbled and run-on. I’m so tired right now.

The infusion itself went ok. They gave me solumedrol again but it will probably be the last time since I’m having crappy side effects from it. Thursday night I was up from 4am til 7 am because I was itching like crazy. The night before that I was up because of leg cramps. I’ve been getting muscle aches and heart palpitations. All from the solumedrol.

Over the weekend I was supposed to go to the Lupus “Cruel Mystery” awareness event in Los Angeles. I was going to blog about it and promote that entry to get my blog out there. But I couldn’t go because I woke up feeling really awful. I was so disappointed I wanted to cry. I was so tired, when I showered I had to sit on the floor halfway through because I was too tired to keep standing. I’m still worried about developing shingles, since that can cause some flu-like symptoms. I had a runny nose and cough all day but it felt more like allergies than a cold. I had shakiness and heart palpitations pretty badly too, which I later realized was because I didn’t have enough potassium in my body. Thanks for fucking up my life, solumedrol.

During the infusions I seem to run a slight fever and my face gets the lupus rash. My throat glands get sore. I basically feel like I’m in a flare while I’m sitting there. I’ve heard from other “infusees” that this can happen to them too.

My toes are still going numb, on a daily basis now. It gets so bad that I get blisters because I don’t realize my toes are rubbing together inside me shoe when I walk. The only way I’ve figured out how to get rid of the numbess is to take a hot shower. After I get out the numbness is gone but my feet ache like crazy and have a blotchy black-and-blue rash. I forgot to bring it up to  my rheumatologist when I was there last week. I was so busy worrying about getting my infusion that there were some things I forgot to discuss with her. I’ll call her this week.

I have an appointment today with my Primary Physician to get a referral to a cardiologist to make sure all my heart palpitations and stuff aren’t being caused by my Mitral Valve Prolapse. It was mild last time I had an ultrasound, but that was a long time ago (about 6 years I think) and it can be progressive. I really don’t think there will be any progression but I just want to be on the safe side and check it out.

TTFN

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