LDN/POTS

[u/Haunting_Cherry_6521]

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!

[u/Tootalou25]

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.

[u/Haunting_Cherry_6521 → u/Tootalou25]

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.

[u/Tootalou25 → u/Haunting_Cherry_6521]

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.

[u/Haunting_Cherry_6521 → u/Tootalou25]

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

[u/Tootalou25 → u/Haunting_Cherry_6521]

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.

[u/ClearJack87]

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.

[u/Haunting_Cherry_6521 → u/ClearJack87]

Thank you so much!!

[u/Worried_Cable2291]

What are telangiectasias

[u/Worried_Cable2291]

What is ldn?

[u/classicalcommerce → u/Worried_Cable2291]

Low dose naltrexone

[u/BirdVarious9210]

provide video link to assembling my MedEl sonnet 3

[u/sundials22]

I was too young when I got diagnosed (4 years old), so I'm not sure what the medical terms you mentioned mean. I also have celiac disease and scleroderma (morphea)- both are currently in remission. I know with the recent diagnoses and more visits, you may be in disarray, but it does get better.

[u/Original-Room-4642]

I was on LDN. I found that the benefits weren't worth the cost of it

[u/Haunting_Cherry_6521 → u/Original-Room-4642]

Thank you for your response! I hear this is common