Ldn and sjogren
Posted , 14 users are following.
Hello. Does anyone here take LDN? Does it help with dryness?
2 likes, 39 replies
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Notes on Ldn and sjogren
deidra40034 lia23756
Posted
Hi Lia, Have not heard of this, but was reading all the posts of the others, as well as your responses. Very interesting! The dryness is the least of my issues, as my SS has also gone inside to my organs, as well as the neuropathy in both of my feet and lower legs. Also walk with a cane. Have been have been having bad flareups in my left foot and leg, as well as all over the last week. I can not take the plaquenel, caused damage to my eyes in the first 3 months, had to be taken off immediately. I can't take pain meds, make me very sick. The only thing I take is my prednesone, and now imuran, which does help with the dryness, a LOT. The only other thing I get about every 3 months is a Kenalog shot, it helps some. Although, given it is a steroid, it is not the kind that leaves the body, which is not good. So, if there is something that comes along that might help, that I might be able to tolerate, I am interested! I have not asked about the gabapentin just yet, but with the issues I have been having, I will be calling my rhuemy!!! I look forward to reading more about this, and hearing more about it from you!! I hope it continues to work, and help you!!! Pain free, even if not completely sounds wonderful!!! So darn tired of this, and the fatigue is just crazy!!! Best of Luck to you!!! XO
brenwag68 deidra40034
Posted
Hi deidra... I cannot believe how many of the same symptoms you have, I have. (Problems with organs, neuropathy, etc) but what surprised me is that you said problems with your "left" foot & leg. My problems are with my left side (arm, hand, leg, foot & I too walk with a cane) my rheumatologist (who is a fool & looking for a new doc) said to me that the problems I have with my left side have nothing to do with sjogrens but after reading on here so many of us have the exact problems (in various degrees) the only meds that I take at this point is pilocarpine (I need it due to the severity of my dryness, which is causing organ malfunctions) I have tried numerous meds for this & either I could not take it or it did nothing for me. I have heard that some do well on gabapentin (I was on it for 4 years but it did nothing for me) gabapentin is a med that they dose according to your weight, so my dosage was very small (I only weigh 113lb) so maybe you need higher dosages to work!?!? I take glucosamine & extra strength Tylenol for pain & meds to help me go to sleep. So I too really hope to find a med that works... best to all
asokasus lia23756
Posted
yes. I have for over 10 years. withing 48 hours of the first dose, most of my symptoms diminished by 80%; within a week most were gone. it's still working after all these years. for me, it was like a miracle drug. btw, i do take it in the morning instead of before bedtime as is usually recommended because it badly disrupted my sleep. nonetheless, it still worked.
you have almost nothing to lose by trying it as insomnia is nearly the only notable side-effect.
lindaisout lia23756
Posted
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/ ; regarding LDN
lily65668 lindaisout
Posted
Hi - there's something wrong with that address. It goes to a non-existent page. However, I'll search for low-dose nalexone and NCBI. I find they're a good site for most things.
As a matter of fact, this came up only last night. I was talking to a colleague who has RA and is on methotrexate. She's having a lot of side-effects, including constant attacks of bronchitis, in spite of being on a lower dose than her rheumatologist would like. She's tried reducing it further but the pain becomes unmanageable. I was just thinking about LDN when I woke up this morning, as I'd heard it was a good alternative. Thanks for the reminder!
lindaisout lily65668
Posted
Hi. Just saw your response and prob. I checked and copies and now pasting. Hope this works https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
lindaisout lily65668
Posted
lily65668 lindaisout
Posted
Thanks - this one works. The previous one took me (and still takes me) to a "page unavailable" message.
lindaisout lia23756
Posted
I don't understand why you and I get different results on that???
lily65668 lindaisout
Posted
Me neither but I've just tried again - same result. Maybe it depends on where you are in the world. But the other link works just fine anyway.