(1)-19 ~The new drug Saphnelo gave me, an SLE patient, hope~

Hello. I'm BURI, and I've been living with SLE for 35 years. 😆
Thank you for reading.

This time,

I am writing about the results of my checkup for my chronic illness, SLE, last Thursday,
and about the new drug, Saphnelo.

I would be happy if you could read until the end.

(1) The nerve-wracking results

For this internal medicine checkup,

I had already finished my blood draw during my OB-GYN visit the Friday before last,
so I was called in at 9:15 for my 9:00 appointment.
(So easy! 🤣🤣🤣)

Recently, I've been having symptoms like trigger finger,
and it's been hard to move the ring finger on my left hand.

I was worried it might be a symptom of rheumatism, so I had it added to my test items, but...

Absolutely no issues (lol).

I'm so relieved!

My SLE levels are also steady,
and if I can get through the summer, I should be able to reduce my steroid dose to 5mg, which has been a long-held goal.

As far as I can remember, the last time I was at 5mg was about 20 years ago.

I am truly happy.

After that,

I finished my medication reservation

(By the way, nowadays I can send the prescription data from my phone and pick it up without any waiting time. So easy! 🤣🤣🤣)

Finally, it was time for my usual Saphnelo IV drip.

(2) What is the new drug Saphnelo?

Saphnelo (anifrolumab) is a new drug for SLE that was approved in 2021.
By blocking a part called the "type I interferon receptor,"

it works to suppress inflammation and the production of autoantibodies in SLE.
Now, once every two months,

I get an IV drip after my checkup (lol).
..........................................

In clinical trials,
about half of the patients who did not see sufficient effects from existing treatments showed improvement.

For me personally, my SLE levels have stabilized since I started using it.

I believe that being able to reduce my steroids to 5mg
for the first time in 20 years
is also thanks to Saphnelo.

*The effectiveness varies from person to person, so please use this only as a reference...

[ Reference/Citation Source ]

• Mechanism of action of Saphnelo (anifrolumab) [Lupus Erythematosus] - New Drug Information Online

• Saphnelo launched as a treatment for SLE with insufficient response to existing therapies - AZ - QLifePro Medical News

• Basic information on Saphnelo Intravenous Infusion 300mg - Nikkei Medical Prescription Drug Encyclopedia

..........................................

After that, I received some happy news from my doctor...

They said that in the near future, I will be able to self-inject at home.

Right now, I go to the hospital once every two months for an IV drip (which takes a little over an hour),
but if I can self-inject at home,

I will be able to reduce the number of hospital visits.
This is happy news for SLE patients.

I look forward to hearing more about it. 😆

Starting with Plaquenil and Saphnelo,
new drugs are coming out one after another, and I have been able to significantly reduce the amount of medication I take.

Compared to 30 years ago, I think it's amazing progress.
However, it is also sad that there is still nothing to replace the essential Prednisone.

But I will take this positively and work hard on my treatment.

3. Everyone, do you ever experience things like this?

In my case,
even when my data is stable,

sometimes I feel sluggish,
sometimes I feel down for a reason,
and sometimes I feel depressed for no reason at all,

so there are many times when symptoms appear that cannot be explained by data.

Before, every time symptoms appeared,
I would get quite dragged down and depressed,
or I would look up everything
to see if it was related to my chronic illness.

But I have grown a little bit,

and now I feel like, 'Oh, it's here again,'
and I don't let it drag me down for that long anymore.

If it's impossible, it's impossible💦💦

I accept that,

and if it's work, I wrap it up.

If it's a mental worry,
I don't dwell too deeply on things I can't do anything about
(the 'it'll work out somehow' spirit).

Also, I write about it on Note.

I get through it by doing things like that.

4. Rewards are also necessary

My Saphnelo IV drip finished just after 11:00. (Super fast 🤣)

I finished paying, picked up my medicine (a huge amount 🤣🤣🤣),
and left the hospital.

This time my husband came with me, so
we stopped by Costco on the way home,

and bought the new Oikos peach yogurt, potato chips, cheesecake, and more.

(I don't have any dietary restrictions, so I'm eating what I want to eat right now.)

And then,

we ate the hot dog that you can get for 180 yen (with a free drink 🥰) (my husband had two 🤣) and went home.

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Thank you for reading until the end.
I would be happy if you came to read again.

It would be encouraging if you could also follow the magazine🥰

See you again😆

*The next article ishere.