u/Marine_Baby

My rheumatologist is considering adding pilocarpine and naltrexone because I refuse to retrial pregabalin or gabapentin again (taken at night, I would still need to nap 30 mins after waking up, I would forget how I got somewhere when I drove and it made me feel like jack sparrow on land, it definitely affected my cognitive ability, I trialled them both for 3 months each and had no effect on pain)

I am fortunate to have a gp that believes my pain is real and she prescribes me opiates, but LDN will mean I have to stop taking them before I start trialling LDN. I am not looking forward to that idea because my pain stops me from sleeping and I have started to develop cyclical vomiting from pain overload. I had to quit my full time job because of how bad it made my illness. 2 years of recovery down the drain. I get steroid shots into both SIJs and my trochanters and I’m looking into spots for my upper back. It takes me two weeks to recover from 20 mins of yoga, the strong pain meds are the only thing that stops me from being bedridden - or rather floor ridden because the bed is too soft.

I’m looking for peoples experiences on LDN, coming off meds to take LDN, did it help your pain, what side effects did you experience, and all around anyone’s experience on it. 🙏

I’m also on 400mg plaquenil and 15 mg MTX, I just had to go back to 15 mg after a month on 20mg because my mouth is being tortured.

Im just wondering how long it took people to feel an impact on their pain when being out in methotrexate…

😭 I’m on MTX 20 mg once a week, just increased from 15 mg after 3 months. How long didn’t take before it started affecting your pain levels? I have dxd Sjögren’s syndrome and I’m also on plaquenil 200mg a day. I’m sick of not being able to sleep, stand or sit for too long.

Thanks for commiserating with me.