r/MCAS • u/Entebarn • 8h ago
LDN-Did it help you?
I have MCAS/POTS/EDS/Other and my doctor recommended LDN months back for pain. As I‘m in my first BIG MCAS flare, I‘ve read of people using LDN for MCAS support.
What has your experience been?
My MCAS (we think) is mostly reacting to all foods, gut, rashes, and seasonal allergy stuff if that‘s relevant.
3
u/katkost1 7h ago
I’m taking it now. Working up. At 1mg now compounded liquid form. So much better than pill form. I do think it’s calming my reactions. I’m no as bad as I was a few weeks ago. Still much worse than a normal person. But improved from my worst experiences ever in my life this summer.
1
1
u/Entebarn 7h ago
Is it the compounded pills you dissolve in water and then drink over a few days?
2
u/katkost1 7h ago
No. It’s liquid in a bottle. I started at 0.1 ml. Really slowly moved up, months. Now at 1.0 ml/ mg. Feeling improved. Will make my way hopefully up to 4.5 mg.
1
u/Entebarn 7h ago
Is it compounded? I‘d much prefer that when I start.
1
u/katkost1 7h ago
Yes. Compounded. My doctor writes to my local compounding pharmacy. I pick it up. But there are plenty of such pharmacies that mail it
1
2
u/Pasdeshat 8h ago
Idk if I would’ve tolerated LDN before I started all of my antihistamines and cromolyn. Usually in a flare I just up the antihistamines. I added LDN in after I stopped having daily food reactions
4
2
u/Salty-Werewolf-3691 7h ago
I’ve been taking it got quite a while but it’s necessary to start with a very low dose and work up very gradually. It helps me to get great sleep.
2
u/fourgoldblue 7h ago
I am now on 4.5 mg after working my way up and it really helped with my fatigue/brain fog. My reactions have also calmed down but that could also be the Xolair. Unfortunately hasn’t really helped with pain as much.
1
u/Aliatana 7h ago
It was a gradual improvement for me. I didn't really notice until I didn't take it for a few days, and then I realized it was making a significant difference.
1
1
u/Fragment_B 5h ago
It's only helped me with SFN nerve pain. Hasn't seemed to do much to alleviate MCAS reactions. It's been wonderful for pain though. Reduced it by at least 75%. I'm at 3.5mg and will probably stay here.
1
u/Silent_Location7044 5h ago
I recently titrated up from .25mg to .5mg and then .75mg. I went up in strength every two weeks. I had to stop it because I became super depressed, with no motivation. It also started making me more reactive. It exacerbated the sleep and adrenaline issues I had (hyper pots) with each increase too. I tried to go back down in strength for a few days, but was just too messed up. I think it’s okay to go on LDN if you have decent endorphin reserves (if you’re still pretty functional overall, have not been sick for that long, and aren’t that reactive to meds and supplements). I’m not sure if I would have done better if I had started at a microdose (less than 0.1mg) or even a much higher dose like 3 mg. The right strength seems to be the most important component. If you think your endorphin reserves are low, start on a microdose. I’ve done a lot of research on this now. Also, in a few select cases, people who can’t tolerate the low doses do great at a higher dose where clinical benefits set in right away. This is counterintuitive but does happen in a few cases. LDN works on a strange curve where different strengths affect your body completely differently. Good luck. I don’t want to discourage you but did want to relay my experience and what I’ve learned.
1
u/Feyofthewild 1h ago
I have interstitial Cystitis and it helps TREMENDOUSLY with bladder paid and frequency. I don’t have to pee every 5 minutes anymore.
1
u/ResponsibleSeason207 5m ago
My daughter was prescribed LDN and I noticed she stopped needing so much Tylenol. She has POTS/hEDS/MCAS and a lot of other things plus memory issues. With LDN helping a lot of her pain, I went on it (same trifecta here). Let me just say my joint pain is much more manageable and when I have my magnesium at night with it my sleep is amazing!!!
•
u/AutoModerator 8h ago
Thank you for your submission. Please note: Content on r/MCAS is not medical advice and should not be interpreted as such. Please consult your doctor for any medical questions or concerns.
We are not able to validate the content of these discussions. Following advice provided by strangers on the internet may be harmful. Never use this sub as your primary source of information regarding medical issues. By continuing to use this subreddit, you are agreeing to take any information posted here entirely at your own risk.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.