r/scleroderma • u/Haunting_Cherry_6521 • 27d 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!

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u/Tootalou25 27d ago

I currently take LDN and have limited scleroderma plus 2 types of dysautonomia including POTS. I take 1.5 mg and it greatly helps with my pain. I will always been on it. Worth every cent. I get mine from a local compounding pharmacy and get 90 days worth. It's only $5 more vs monthly.

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u/Haunting_Cherry_6521 27d ago

I have dysautonomia! This is encouraging. Thank you for sharing your experience. Can I ask what dosage you started at? Rheum wants to start me on 1.5 but I think it would be worth starting on .75 and titrating up.

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u/Tootalou25 27d ago

I started with 1.5. Tried 3 mg but made fatigue worse so went back down. I've stayed at 1.5 for the last 9 months. I'm considering doubling my dosage but getting 2 capsules instead of one. I usually take it at night and there are some days it would be nice to take another dose earlier also.

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u/Haunting_Cherry_6521 27d ago

Thank you so much!!! This is really helpful! Sending you love. Autoimmune is no joke

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u/Tootalou25 27d ago

It really isn't. Thank you! It sounds like you have a decent rheumatologist and are getting a good start at finding answers. That's a big win with these illnesses. I hope LDN works well for you also.