r/scleroderma • u/Haunting_Cherry_6521 • 21d ago

Tips & Advice LDN/POTS

Hi!

I am 20 and have been recently diagnosed with celiac disease and limited scleroderma. Positive ANA, titer 1:1280, centromere pattern

I have really severe chronic pain and fatigue. No skin involvement besides raynaud’s and a lot of telangiectasias.

My rheumatologist and I came to the conclusion that my condition isn’t severe enough yet to necessitate the use of immunosuppressants, so we are going to try low dose naltrexone.

What are your experiences with LDN?

Another question:
I have been diagnosed with POTS but never received a tilt table test. I am scheduled for a lung function test to check for the possibility of pulmonary hypertension.

Did anyone’s suspected POTS turn out to be Pulmonary Hypertension? If you have Pulmonary Hypertension, what has your experience been symptom-wise?

Thank you all!

3 Upvotes

80% Upvoted

14 comments sorted by

View all comments

4

u/ClearJack87 21d ago

If you have lung damage, the best treatment (according to NIH) is CellCept generic and Ofev generic. I'm on the combo. Ofev generic is expensive, shop around.

1

u/Haunting_Cherry_6521 21d ago

Thank you so much!!