Hey, hope your all well!
This morning I went to watch my niece’s first dance show. She’s only 4, but she’s a cute little ballerina. It brought back so many happy memories from the days when I used to dance. But also, reminded me how much I miss it all. How much I miss teaching, dancing, and helping out/performing in shows.
For anyone who doesn’t know, I danced from being very young and didn’t stop until my mid-20s. Unfortunately, my final years of dancing became a struggle, thanks to the wolf. I went from dancing/teaching several nights a weeks, and all day Saturday, to slowly dropping class by class.
By my mid-20s, I was struggling. Things were not undercontrol with my Lupus. I had just been in the hospital for my 2nd round of Iloprost. The immunosuppressant, Mycophenolate, I was on at the time to try and get my condition under control, wasn’t working. I was struggling.
Heartbreakingly, I had to make the decision to stop dancing. One of the hardest decisions I’ve ever had to make.
Oh, I do miss it!
I miss the trips we had to Pinapple Dance Studios in London with my good dancing friends. I miss the laughs we used to have when teaching the Adult Ballet Class (they were a great bunch of people). I miss spending my Saturdays dancing all day long. I miss the adrenaline you get from doing shows and exams. I miss it all!
Dance may be in my past, but I’m very lucky. I have made some great friends for life.
Reducing my PPI
Over the past few months, I’ve been slowly reducing my PPI dose of Esomeprazole. I was on too high a dose, but for years, I needed it. I was on 60mg a day, a dose my Gastro consultant decided to prescribe me. A dose that’s not recommended for long-term use, yet I’ve been taking it for years.
Being on long-term PPIs is not great. They come with many side effects like nutrient deficiencies, increased risk of infections, and bone fractures. This did concern me, especially when one of the side effects is the affect can have on your bones. Something which is already a concern for me as I’m on long-term steroids, and osteoporosis runs in the family.
My Gastro consultant used to always say to me, the dose isn’t ideal, but when the pros outweigh the cons, its ok. Something that never filled me with much confidence.
I even had my GP questioning the dose. But my Gastro consultant okied it, and was allowed to be prescribed. Again, something that never filled me with much codifence.
Dropping my Steroids
Last summer/autumn, I dropped my dose of steroids down from 7mg to 5mg. Once I was settled on my new maintenance dose, I decided this was a chance to see if I could drop my PPI down to 40mg a day. Still not an ideal dose long term, but a better dose than 60mg.
So in November, I decided to give it a go. It wasn’t an easy few weeks, but I did it.
For anyone who doesn’t know, when you drop PPIs, you get withdrawal symptoms. And the withdrawal symptoms can be pretty nasty! I had painful heartburn and felt sick, especially at night. I got a lot of bellyache, and had to be extra careful with what kind of food I ate, especially acidic food.
It took about 4 weeks for all the side effects to settle down. There were days I felt like giving up. There were days I wasn’t sure if my symptons was because I needed the higher dose of Esomeprazole, and not withdrawal side effects. But I kept going, and I came out the other side.
I Did it All Again
A few months on, with my conditions being a lot more undercontrol, and no longer relying on pain meds to get me through the day. I decided it was my opportunity to see if I could drop my dose of Esomperazole down even further.
So here I am, just over 4 weeks into my second dose drop. I’m now taking 20mg a day of Esomeprazole. Honestly, a dose I would never have dreamt about getting onto a few years ago!
In the future, I may need to increase my dose backup. But for now, I’m on 20mg and very happy about that.
As much as I would love to be able to stop my PPI altogether. I know that day is unlikely, as I do still take a lot of oral meds. I know I need to protect my stomach and the importance of taking a PPI to do so. But 20mg is a lot healthier for my body long term, compared to 60mg, so it’s an achievement to celebrate.
That’s it from me this week.
Until next time,
Goodbye for now.
Emma
xox
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Want to catch up on my previous blogs, head to: My Weekly Lupus Diary
