Treatment plan #lupus #stillsdisease

This morning my rheumatologist called to let me know that I’m all clear to start a new treatment. I’m going to be doing Actemra infusions for Still’s Disease. It’s another biologic, and the IV infusions will be once a month, much like the Benlysta I was getting last year. Actemra can also be injected at home but he said that it’s not as effective, and I could potentially see results sooner with the infusions. The side effects sound similar to Benlysta, which wasn’t bad at all. It takes 3-6 months to see improvement. I’ll be starting them sometime next month.

We are trying the Actemra first because the Kineret is a daily injection that can be painful for some people. I don’t mind getting infusions. I’ll be glad to finally be on a treatment plan.

I talked to my Gastroenterologist today. One of my blood tests said something about “borderline Salmonella” and he explained that it was just the existence of the antibody, not the disease. That means at one point I had Salmonella but I don’t have it now. I’ve moved the endoscopy to the middle of April. I have to work around the migraines I get from my period, because I’m not supposed to take ibuprofen for 5 days prior. It’s going to be really hard, since all of my pain is caused by severe inflammation, including my headaches. I’ll be glad to get the whole thing over with.

I had the ultrasound done on my kidneys on Friday. They’re checking the blood flow. The technician said that everything looked good, but I’ll get a more complete assessment from the doctor on Friday. They’re making sure my high blood pressure isn’t caused by narrowing arteries around my kidneys. I’m hoping the nephrologist can point me in the right direction for my high blood pressure. I had to fast for 6 hours before the ultrasound. I was alright with not eating, but drinking minimal amounts of water in that time set me back a few days. For some reason it made me really tired. I felt like I spent Sunday recovering from it. The same thing happened to me when I had the spinal tap. My stress reaction to procedures is usually delayed by 2 days. I stress dosed my hydrocortisone and I felt better after.

I have a migraine right now and one of my hands is feverish from the arthritis. Typical night for me.

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8 Comments

    • It’s ok. I manage. No pub for me, but I do make it to the movies. I haven’t been on a holiday in a while but I think as long as my trip wasn’t to a destination with hot weather I would do alright. I’m able to do social things once in a while as long as I don’t overdo it.

  1. I get tired with the Addisons and steroids so am avoiding holidays with flight times over 4 hours
    Next trip Corfu , we have a mobile home in the New Forest which is restful for me a grandchild Ava . Stayed in Long Beach CA once!

    • I haven’t been on a plane in a long time, since before my addison’s diagnosis, but I think I would agree that 4-5 hours would be my limit too. I have a hard time sitting for a while so long car trips are better with stops or staying overnight. My joints get locked up when I sit too long. Corfu sounds beautiful. I’ve been to the long beach area, I’m closer to Malibu. A clear water beach is definitely on my bucket list though.

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