Mayo Clinic Connect
I have been diagnosed with PMR and can’t take Prednisone.LDN has been suggested – it has been used off label for autoimmune disorders. Has anyone heard of this?
Hello. Yes, I have. Actually it was delivered to me yesterday and I plan on starting it as soon as I begin a cbd/thc regime for pain and reduce my hydrocodone. My pain management Dr prescribed it to me over a year ago for undiagnosed chronic pain. I never began taking it because I needed instant relief and wasn't willing to drop hydro at time which is contradictory to LDN. I've continued to research it and now have a diagnosis of Small Fiber Poly Neuropathy. It's a crap shoot but what isn't at this point. I'm starting with 1.5 then doubling in a month to 3 then to 4.5 the following month. If in 3 months I dont feel its having a positive influence on my pain, I will chalk it up.
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Yes. I have used low dosage Naltroxene to control chronic pain for my DDD, fibromyalgia pain, my Pain mgmt Dr. Thought it would benefit my pain in my early stages of getting off opiate pain medication for short term use in Suboxene strips & now they come in generic form of tablet's they are all taken in sublingual form under tongue to slowly melt in your mouth. In my 1st month of taking it I had alot of energy but after that I got used to it & it did help w/pain alot more than if I had just got off opiate pain meds. I'm allergic to different types of meds & I had severe migraines/nausea/& just a bad feeling from Gabapentin & pregablin/Lyrica, type of medications do not mix well with my body & for ppl like me can not tolerate this type of medications, some Dr's believe this to help w/patient's who are taken off pain meds & can not take anything else but LDN. I was on it for a total of 3yrs just to keep the pain levels lower & not have horrible side effects from stopping in 1day notice no more pain medications. If I had to do it again I would still do it his way. It helped & it work's. Now I'm off it & now I have my new Pain meds called medical cannabis in a form of capsules & liquid that I take daily very small doses & they work. I will say yes pain meds/opiate pain meds work the best but they have some seriously bad side effects. I used to take them for over 10yrs. Would I go back on them only if I have surgical procedure for short term pain relief.
As for the question this is my answer yes it helps but it is not a long term fix.
I hope some of this Info helps you.
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@msstoppainnagginme, Thank you for adding to your story about pain. It sounds like you are managing it well with medical cannabis. Can you share the CBD:THC ratios and the your daily schedule for medicating so that others may benefit from your experience. Thank you and may you have a day without suffering. Chris
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Thank you Chris & you're very welcome & any info that I share I share to give hope to our fellow sufferers of Chronic Pain in all their forms. I share because I have learned living life in chronic pain with all the inflammatory & nerve pain & muscular & joint pain even some who have severe pain issue's of bone on bone pain I shared about my need for a knee replacement surgery, & yes made appt w/till mid January. But prior to that I am getting a RFA in my Thoracic spine. There go my holidays not that I feel so jolly it will be my Mama's 1st Year in Heaven/R.I.P. My Beautiful Mama.
I want to share how I take my Medical Cannabis to treat my Chronic Pain issue's. I'm very happy & it has changed my life & it does not have the side effects like I had when I was taking Opiate pain meds. You see I volunteered to stop & I left my pain mgmt Dr. Who treated me for chronic spinal pain issue's, it was early summer & I was not getting enough releif from taking opiate pain meds Hydromorphone HCL 8mg 3x a day, & Nucynta ER 2X day, tons of stomach antacids, even migraine meds & tons of Ibuprofen 800mg 3-4 pills a day, & lots of muscle relaxers & on top of that it was eating away at my intestines & I was in more pain from 1 thing or another I was miserable.
So I changed my New Pain mgmt Dr & he explained that in order to get better he would put me on low dose Naloxone & Buprenorphine aka Suboxene, they help stop the pain & ppl like us in chronic pain. It helped ALOT. But the Pain mgmt Dr knew that alone wasn't gonna be enough so I was given a script for medical cannabis & I was scared & excited at the same time, you see I do ALOT of different research & gather much information b4 I take anything I'm 54 yrs old & I suffer from ALOT of different issues including severe hot flashes & even certain vitamins. Cause more severe hot flashes that make my nerves shoot thru the roof & add chronic pain perfect mix for an explosion of bad temperament & anger. But that is being dealt with therapy & self learning to breathe properly & diffusing my pain & stressful situations where the shit hits the fan.
I found hope from this wonderful product that comes from nature & it works & I am amazed by how little it takes to help ease my pain. Of course there are day's or nites dat I over do it say I pick up something or walk too much or my arthritis makes my spine hurt soo bad this helps that if u have someone put it on your back for you. I have learned how to use a little cocoa butter & say about 2tablespoonfulls of cocoa butter or Vaseline rub any scent & add 1full dropper of CBD cannabis oil/ & mix well in a glass container ALWAYS a must.close & let sit in refrigerator for about 3hrs & then that container of your personal CBD cannabis can be used to apply on any body part that is giving u severe chronic pain & the cocoa butter or Vaseline will also soften your back have ur Hubby/or wife etc. Rub it in gently leave uncovered so it absorbs abt 15 min or so & then dress u will feel soo much better. I take 1capsule of high THC/&CBD low dose capsule daily in the morning w/tiny piece of cheese or avocado because it binds to the oils in these foods & helps the medicine to go thru your body without bothering my stomach/that's for ppl like me who have no gall bladder/filter for ur body. Yrs ago Dr's had no idea what it did now it's a filter. I thought I share dat for anyone missing their gallbladder. You can take it on empty stomach too just make sure drink lots of water. I will try to explain as best as I can. With medical cannabis there is no 1 size fits all. My dosage is different than my best friends or maybe someone else's. This is because our bodies posses endocanoboid system that is different for every person as are our fingerprints. As with that being said you will have to try this out for yourselves to find the right dosages. So with all the rage on tv & everywhere you look the CBD rage is just not the same stuff unless u like to paint ur car with Hemp CBD, this is not medicine & does little to nothing so do not waste your money on junk. Buy Medical Cannabis from your state's list of dispensaries on your State Health Dept. & you get a license card that you have your pictr. & license in 1 per year.
Then as most ppl I went straight for the CBD liquid thinking this was going to be my best bet. I got news for you ppl no this is not true I took about 2dropers full my head was spinning as I got euphoric effects from it. So I read the directions & tried small tiny doses of 10mg CBD & 5mg dropper of THC I was still dizzy so I decided to try their capsules I explained to the young lady at dispensary how it made me feel & she suggested I try the capsules in a 20:1 ratio high THC 5mg & CBD 0.25mg of cbd per capsule s o the next day I tried this capsule it took 20 min to kick in & I did not get any euphoric feeling or dizzy nothing but pain RELEIF. I was soo happy I gave the dispensary a5😍😍😍😍😍 star's for my delight & joy & RELEIF. It lasts for about 6-8hrs of RELEIF I take 2 capsules of 5mg of THC/CBD mixture.
I buy a bot of 60pcs monthly & pray we end up having insurance cover this medication so nor ppl can benefit from their effects of RELEIF from chronic misery. I hope this helps Any1 who is interested. I do not care for vaping I tried it not to my liking but in a pinch it's the fastest way to take.
Wishing everyone a happy day. Be kind to your bodies & mind. This is part of my pain Relief & it works for me. Maybe it will work for you too. I know a wonderful Friend who suffers from Lyme disease & she takes it too & if it helps her that means we r not the only ones. Best to all. Mimi
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Hello @vfaye. You may notice I combined your discussions on low dose naltrexone to one discussion and moved it to the autoimmune diseases group where the other PMR discussions are located. @vfaye, here is some additional information on naltrexone and its possible uses, https://www.mayoclinic.org/drugs-supplements/naltrexone-oral-route/before-using/drg-20068408. There are some counter-indications listed for this medication and it does mention it should be prescribed by a medical provider and they can help decide the best regimen moving forward. Is this a medication that you have discussed with your provider?
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OMG I am so pleased to meet you and read your post as I literally have just sat down to rest after taking a hydrocodone and returning from my first MM dispensary visit. A bit overwhelmed but, incredibly prepared thanks to this forum and my years worth of research. You totally are speaking my language regarding pain, pain management and drugs. Thanks ever so much for sharing your story, trials and tribulations, and providing something more I can relate too. I've had several RFA, have LDN sitting in my cabinet as plan B to medical marijuana. Hoping so bad to be able to ditch my Lyrica, Hydro, infusions and maybe Duloxetine but, only time will tell. You give me such hope and honestly timing couldn't have been better. Mayo Connect has provided me more than any Dr ever has or will and for that, I am forever grateful. Mimi…you are awesome. Thanks for speaking your truth. Rock on sister!!!!💪🏼
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Mimi…my last post was meant to be replied to you directly, not Justin. Just making sure you see it!
Thank you Rachel & everyone who has inspired me & I hope I can inspire more ppl. It does work & it does help. Nice to meet u too. I have to say it is my Great happiness that I can help a fellow chronic misery sufferers, end or lessen the pain. You have n o thing to lose but to try lose the pain. Best to you as well.
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@msstoppainnagginme, Wonderful news. Thanks for taking the time to post for everyone. I understand that joyous feeling of getting reliable relief from pain without harming your body.
Thank you for the extensive recording of what you find working for you right now. And that will change as you /we see newer and more applicable medical cannabis products, as your body adjusts to the dosage you currently have and you modify the program with your Pain Clinician. I even change my timing and the ratio of CBD:THC based upon what is planned in the day. Sometimes I need more THC to get me going and sometimes I need more CBD when I finish the laundry and want to relax and rest my body.
I must admit, I have never tried the high ratio THC. As you have written it……20:1 THC/CBD. The key to treating pain with cannabinoids appears to be respecting the “sweet spot” of dose. More is not always better when it comes to cannabinoids and everyone may have a different sweet spot. May you be free of suffering now…….Chris
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Yes, I have heard of it. I had gotten some from a pharmacy in Boca Raton, a compounding pharmacy; the pharmacist told me that with hypothyroid disease, you have to be careful as it can put you into hyperthyroid quickly needing to see an endocrinologist right away. One of the pharmacists took it himself and said it did wonders for his arthritis (maybe RA). It's also prescribed for pets.
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Yes, I've heard of it being used for many things, including pet use. I believe it's always compounded. True that drug companies aren't interested.
My ratios to start are 20:1 and 1:19. Both oil for now under tongue and I can't wait to figure out my sweet spot and get to a pill. The taste is nasty! Epecially the thc oil that has no flavor. I'm such a nieave girl, I actual thought no flavor meant taste free..as in, I dont taste the putrid marijuana aroma of a strong, skunky joint. Ughhh, disgusting! Confusing process but I'll get it down.
Patience my dear @rwinney,
I hate to remind you that it took me 3 years to get it right. A lot of that was because of the tumultuous nightmare when recreational marijuana became legal. I think you will get it faster than I did. So, thanks for the ratios….can you tell me which one is which THC or CBD? Sort of like this 20:1 THC/CBD tincture. Fussy old teacher aren't I? Good night. Chris
Both are THC/CBD ratios. This attachment may help. My 2 are marked. Seems like opposite ends of the spectrum to play it safe while putting me on the path comparable to my current pain med strengths. I will increase dose of only the 20:1 THC/CBD by .01 as needed.
I meant .1 ml increases
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