November 23 (F)
Today I got a reply from a Japanese doctor friend of mine. I asked him about my LBM, and he also thinks that it is the side effect of Cellcept. But he suggested also that I should not give up on it because it is a good medicine for my SLE.
November 24 (S)
I observed that my cheeks and nose bridge is redder than the usual. This is called butterfly rash for my case. I noticed that if I am not feeling well, this butterfly rash is getting worst too. Today my muscles hurt, maybe that is why.
November 25(Sun)
I am feeling okay today than yesterday so I decided to go to the supermarket and see what products are new. I found these chocolate coated cranberries. I have read in an article on the internet that cranberries are a good source of vitamins.
November 26(M)
As I thought that I am feeling better, when I woke up today, I have back pain. It is like my back muscles are like paper that is being cut. I decided to drink the mild painkiller, but it seems like that it was not effecting. I thought of taking Ririka because it is good for the over-excited nerves that cause pain, but I will be sleepy during the day so I decided to take the strong painkiller. But it seems like the medicines are slow in taking effect, I can still feel the pain after 2 hours.
November 27 (T)
While I was driving, I saw a St. Mary’s church, but it unlucky that it is far from my home and if ever I want to go to this church I have to go by car.
Today too, my back muscles hurt, but today is better than yesterday. I took the strong painkillers. I felt okay during the whole day. Is it because the weather here is getting cold every day that is why my muscles are aching? I have to ask my doctors.
November 28 (W)
I and my friend went to eat crabs 🦀! Here in Japan, if it is winter, it is the season of crabs. It is my first time to eat a crab course meal. I hope that it will not have a bad effect on my stomach later. But I guess that I will be ok because the volume is not that many. But I have to skip the crab tempura and I only eat a small portion of the crab rice. It was very delicious!😋
November 29 (Th)
I and my 2 younger friends went for a drive and we ended up at the rooftop parking of a game center. I got this picture. At least I posted here in my blog another night view, not always the night view from the hospital window.
November 30 (F)
Today is my outpatient consultation with mama doctor, Kitabayashi Sensei. I was so lucky to meet Nagatsuji Sensei too today. When I visited the ward, he was walking behind me and he called me. I also met the other doctors of the Kidney Department. I was so happy to see them, in fact, I met almost all of them today. 👧
For this week my average blood pressure was 130/100. A little high if compared to the normal. My weight also decreased from 48.8 kilos to 47.9 kilos. My lab test was almost the same as the last consultation day.
Today, I will be having a new treatment by IV. It was sudden to start today, but since it will coincide with my outpatient consultation days and the medicine is already available, I decided to start today. So the new treatment is the administration of Benlysta. This drug is the 1st in the world to be approved for treatment of SLE. So I am very lucky to receive this treatment! Also, it is only recently that the Japanese regulatory body for medicines approve this for use. This treatment is available via self injection or IV. I decided to take the IV version, because I might have an error if it is self administered. So the IV will be in 6 series, 4 IV every after 2 weeks and the remaining 2 every after month, a total of 4 months. The IV administration will be 1 hour and a half. I have to extend my stay in the hospital during my outpatient days, it will take me almost a whole day. But luckily, I don’t have to be admitted just for that because they have a room for treatments like this wherein there are beds for patients who will have IV.
I felt really tired after the IV. It was a good thing that I took time while waiting for my number to be called in the cashier. I had a rest before I went home. Next time, I have to bring my lunch so I can eat before having the IV.
My medicine dosage is still at:
🌅Morning: 10mg of Predonine, 2 capsules of Cellcept, anti-osteoporosis, half of blood pressure medicine, medicine for uric acid, intestinal medicine, Plaquenil, and additional medicine for infection every Monday, Wednesday and Friday.
🌜Evening: 7.5mg of Predonine, 3 capsules of Prograf and 2 capsules of Cellcept, ferrous sulfate, anti-cholesterol medicine, half of a blood pressure medicine, zinc supplement. Sleeping pills #1 & #2.
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