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Savelle has been suggested by a fibro specialist; constipation concern
Dr told me to wean off the duloxetine, and it only took 3-4 weeks (others had mentioned it was "horrible" but not for me thankfully) and not she wants me to start Savella - a drug specifically for fibro. Has anyone tried this?
Also, constipation is an ongoing battle for me, and I use all the suggestions online and from others...anyone else?
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I tried it years ago. The side effects were awful. I blistered and had other problems. The neurologist told me I can’t try it again. There was a difference and it worked but having lupus I have so many drug allergies.
Before trying a new drug, please check out LDN - low-dose naltrexone, which I started taking in early 2025. It helped me tremendously by relieving my pain and ending my severe insomnia. It's safe and had no bad side effects for me, except for vivid dreams (not nightmares tho). Drawbacks are that you must get your prescription filled at a compounding pharmacy, it's not covered by insurance, and it takes a few months to work up to the maintenance dose and then can take a couple months to notice benefits. Also, I read that it doesn't benefit everyone. It costs me $115 for a 3 month supply.
Here's one article on it, there's any more on-line: https://www.verywellhealth.com/low-dose-naltrexone-ldn-for-fibromyalgia-cfs-716070
My constipation was cured when I started taking 250mg of magnesium glycinate every night an hour before bed. I started it because it relaxes muscles and helps with sleep. But it also cured my constipation. Before that, I had to take Miralax every day.
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3 Reactions@daisy17 would you say LDN helps with inflammation?
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1 Reaction@annpeters Yes, it's supposed to help with that. See this article, and you can find more on-line. https://www.gethealthspan.com/research/article/understanding-ldn-impact-chronic-inflammatory-diseases
I am going to try generic version of Motegritty, Prucalopridefor the Constipation problem
@daisy17
Hi, i just read your story and I’m going to try LDN. I found your write up very helpful. Thank you.
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1 ReactionI took Norco for years which can make constipation a big problem. I ate Kellogg's raisin Bran every single day and if once a day wasn't enough I ate more. I got it down to a science and rarely had a problem after that.
Miralax and Fibrogummies prescribed, not helping so far
@daisy17
I have just started on LDN. Can you tell me what mg you were started on? Also, my prescription was $198 for one month. Was your compounding lab associated with Walgreens, CVS, etc. or was it a stand alone compounding pharmacy? Thanks!
@gail4 I started at .5mg because I decided to taper very slowly. Most people start at 1.5mg/day and increase by .5mg every two weeks to reach 4.5mg, which is the average maintenance dose.
I pay $115 for a 3-month supply, so your cost seems extremely high. My compounding pharmacy is a stand alone. Maybe your doctor can recommend a different pharmacy for you that has lower costs. I've heard some people buy LDN on-line from Ageless RX.
This website might be helpful: https://www.compoundingfinder.com/blog/compounded-ldn-cost-price-guide