CFIDS and EBV Quinacrine as treatment

by Sarah
(California, USA)

Quinacrine as a treatment for inflammation is working well for me.

I just wanted to share a treatment that has led to improvement for me.
Since being prescribed Quinacrine just over 3 years ago, my lab results for C-Reactive Protein (CRP) have significantly improved.

The average is 1.00 - 3.00 mg/L.

2017 | CRP 59.86 | Began 50 mg of Quinacrine
2018 | CRP 28.5
2019 | CRP 25.6 | Increased dosage to 75 mg
2019 | CRP 14
2020 | CRP 13 | Increased dosage to 100 mg of Quinacrine

I take it once a day. I'm in the US & in my area, Quinacrine must be compounded. It's not covered by (my) insurance.

I haven't noticed any side effects.

When my doctor raised the dosage, she would alternate between the lower dosage and the new dosage every other day for a while.

Some background:
I'm 52 and was diagnosed with CFIDS in 2010.
I manage and am being treated for several chronic illnesses stemming from EBV.

Thanks for letting me share this. I hope someone finds information about this possible treatment for CFIDS helpful.

Katherine Owen:
Lovely to meet you on twitter Sarah. Thank you so much for reaching out with this recommendation. I would love to know if any symptoms of CFIDS (or EBV) have improved in correlation with the improved lab results.

It sounds like you and your practitioner are meticulous and persevering. Well done to you both.

If anyone else reads this and is taking Quinacrine as a treatment for CFS/ME or CFIDS I would love to hear from you.

Sarah K
Thank you for inviting me to post.
Our NIH states that quinacrine is unavailable here as of two months ago. But I’m continuing to take it.
I find local pharmacists (speciality/compounding) to be a more reliable source than the Internet.

Quinacrine has definitely brought an improvement to my symptoms of CFIDS. The effect is subtle, but by adding it to my regiment, felt well enough to start walking. I also lost weight, 15 pounds.
The reduction in inflammation could be seen in my belly.

It helped reduce foot swelling and pain. And I had vein ablation in addition. For me, this in combination with quinacrine was good for my legs.

Katherine
Thank you again Sarah.