u/Ragin-Cajun-1975

I have Lupus, Chilblains, and Raynaud’s. Diagnosed in 2012 and wasn’t regularly seeing a rheumatologist until last year.

Today at my quarterly rheumatologist visit, she wants to start me on Mycophenolate. She says that it should improve my daily life and remove the need to occasionally take Prednisone. She even mentioned that it will make me less photosensitive to light! 🤞🏼

Who else is on Mycophenolate and how has it helped you? What has your experience been like? I’m really hoping for some positive stories so I can feel like I’m doing the right thing.

Hi!

I started compounded tirz at the end of Sept 2024. I started at 10 units (.25mg) weekly and never increased it. I didn’t have a lot of weight to lose (started around 170 lbs, desired weight 150 lbs).

During that time, we were moving from one state to another and I spent a lot of time going back and forth to get my old house sold. I mention this because protein intake and weight lifting weren’t high up on my list of priorities.

This time last year (July 2025), I was down to 146 lbs and honestly, I looked a little emaciated. I’m tall-ish and usually have an athletic build. So, at that time, I started maintenance at 10 units (sometimes less) every 2-3 weeks.

All was going well, but from Jan 2026 at 146 lbs to July 2026, I’ve put on about 8-10 lbs. I felt like my appetite came back, food noise, cravings for sweets, so a couple of months ago, I went back to weekly shots. At first, it was 10 units weekly, then I bumped to 20 units. It felt like it was wearing off after a couple of days, so now I’m doing 10 units twice a week? Has anyone else tried this approach?

Other key factors to mention:

1. I’m 51 and menopausal. I started HRT (estrogen patch and oral progesterone) in April 2025. Recently, my estrogen levels were checked and showed my levels are too high, so my patch strength has been lowered.
2. I have Lupus and a couple of other autoimmune diseases. Occasionally, like right now, I’m on a low dose (10 mg) of prednisone. When I was at a lower weight, I felt less inflammation.

I get my compounded tirz vials from a med spa. My insurance denied it when my doctor tried to prescribe it, so this was the only way to get it. Has my body just adjusted to it? Is the HRT and occasional steroids throwing things off?

I’m just looking for other people’s experiences that may be in the same boat.

Thanks in advance for sharing your experiences!

Hi!

I started compounded tirz at the end of Sept 2024. I started at 10 units (.25mg) weekly and never increased it. I didn’t have a lot of weight to lose (started around 170 lbs, desired weight 150 lbs).

During that time, we were moving from one state to another and I spent a lot of time going back and forth to get my old house sold. I mention this because protein intake and weight lifting weren’t high up on my list of priorities.

This time last year (July 2025), I was down to 146 lbs and honestly, I looked a little emaciated. I’m tall-ish and usually have an athletic build. So, at that time, I started maintenance at 10 units (sometimes less) every 2-3 weeks.

All was going well, but from Jan 2026 at 146 lbs to July 2026, I’ve put on about 8-10 lbs. I felt like my appetite came back, food noise, cravings for sweets, so a couple of months ago, I went back to weekly shots. At first, it was 10 units weekly, then I bumped to 20 units. It felt like it was wearing off after a couple of days, so now I’m doing 10 units twice a week? Has anyone else tried this approach?

Other key factors to mention:

1. I’m 51 and menopausal. I started HRT (estrogen patch and oral progesterone) in April 2025. Recently, my estrogen levels were checked and showed my levels are too high, so my patch strength has been lowered.
2. I have Lupus and a couple of other autoimmune diseases. Occasionally, like right now, I’m on a low dose (10 mg) of prednisone. When I was at a lower weight, I felt less inflammation.

I get my compounded tirz vials from a med spa. My insurance denied it when my doctor tried to prescribe it, so this was the only way to get it. Has my body just adjusted to it? Is the HRT and occasional steroids throwing things off?

I’m just looking for other people’s experiences that may be in the same boat.

Thanks in advance for sharing your experiences!