Just thought I would share something positive, my Daughters EM has not gone, but it’s has diminished to the point where She can now participate in life after four long years of struggle.
What has helped her is as follows.
Low dose Naltrexone 4.5mg at night this has reduced the flares significantly but has taken a few months to really show benefit.
37.5 mg Venlafaxine in the morning.
Some pain management hypnotherapy we found a Doctor who practices the same surgical hypnosis techniques as they do in Belgium.
This has been arrived at after trying many other treatments too numerous to mention here.
I hope that this information and or subsequent treatment on the same regime might help others.
I thought it might be a good idea to bump your original topic on low dose naltrexone to the top of list.
You’ve said elsewhere the naltrexone is compounded. What are the other medications?
Also, do your daughter’s doctors have a theory on why it has worked in her case? It’s hypothesized low-dose naltrexone’s mechanism of action involves inhibiting opioid receptors to increase production of endorphins and upregulate the immune system. You’ve previously stated it took 6-8 weeks for therapeutic benefit to be achieved, a length of time that suggests an immune component. However, you also stated your daughter does not have EM secondary to an auto-immune condition. Is there a theory behind why it has worked?
By compounded I mean it’s made up at a compounding Pharmacy for we get three months supply for 100 AUD . We had some major difficulties getting our pain specialist to prescribe anything that was not part of clinical trials. We found a local clinic which was open to trying alternatives and my Daughter produced the research findings herself to the GP. Answer was “let’s give it a try but as you know no guarantees”
We are aware of the mechanism however we don’t know exactly how it works it just does thank the stars
This is the web site my Daughter found it has some great info. Bear in mind we had tried many other drugs before this.
Excellent! I’ll give that information a look a bit later. While I don’t need a new treatment option for myself right now, hopefully it will be of benefit to others in the community.
I’m going to add “Low Dose Naltrexone” in parenthesis to your title line so that it’ll be easier for members to spot this discussion if they do a search for naltrexone.
I am glad the LDN has been helpful for your daughter And, thanks for reporting it here.
Can I ask - Did she start with 4.5 mg from the beginning or did she slowly ramp up? And, any side effects?
One more q - Does she find it reduces the number of flares or the pain of her flares? I’d gladly take either of course, just trying to speculate how it is working for her maybe!
Hi Davipot,
I thank you for sharing this information for everyone.
I am seeing a new Dr.which I will see again in one month. He asked me to research meds I would like to try. I am interested in the LDN but like standing_cat wanted to know exactly how this has helped your daughter. Does the LDN reduce the number of flares? Is she able to spend time out in the heat without a flare? Or does the LDN just simply reduce the pain? What dosage did she start out at? Thank you for any advice you can give!
Wishing for a cure for all
Machel
4.5 mg from the start compounded , no side effects to report. It has reduced her flares almost completely , She feels discomfort from time to time now but nothing near what it was like. Grades are up, She is getting out, starts a part time job soon and is so much happier as are we.
I would urge everyone to try it although this horrible condition is different for everyone. We noticed a change after six weeks.
Let us know if it works for you , we really hope it does.
Thank you so much Davipot! I am so glad your daughter is able to start to live life again!
Stanford pain is trying to do a clinical trial on low dose naltrexone and CRPS (which I think can be similar to EM sometimes), although I think it’s paused for now. Would be interesting as we hear more about this drug and its potential uses in the future.
Sorry to hear about your Daughters struggle , it is just dreadful and some days are dark. Essentially after trying many things and being at almost this is now how our Daughters life stage my Daughter herself found the research , we had a very good Doctor who said “ let’s try it” and honestly after a few weeks there was a marked reduction in pain and flares. The LDN is clean , non toxic and inexpensive $100 AUD forc3 months supply.
Our Daughter is now living again ,for instance a 6 km beach walk with the dog at the weekend in 25 degrees no pain or flare. Has a part time job and Her grades are up.
I would caveat that with the fact that EM is different for everyone and what works for some does not work for others and that our Daughter did not have Reynauds.
Ask your Doctor to give it a try , 4.5 mg compounded each day. It takes a few weeks to tell if it’s working.
Just want to say I’ve been on LDN for a few weeks. I notice a positive difference; it takes the edge off, and I am more tolerant to heat. I am hoping I will get more benefit with time. But even now, it has been more helpful than any anti-seizure med I’ve tried.
Thanks for sharing how it helped your daughter. Honestly if it weren’t for your posts, I would have never tried it. Take care
@Davipot Hello, I have been discussing medications with my General Practitioner and we have agreed that Naltrxone is a good fit for me. He is learning how to treat me because I have no one else.
The Kaiser pharmacy has this in oral form 10mg only. I was thinking I could cut the pill in 1/2 to be 5mg for LDN. I am not clear if she taking it orally?
My doctor was saying that 10 mg is being given to Fibromyalgia patients with success. I have Fibro also along other painfull chronic stuff like Raynauds, Trigeminal Neuralgia, and more.
Thank You
Hi therese I am also in CA and found a compounding pharmacy to make 4.5 mg capsule pills that my doc sent the rx to. I had to pay out of pocket but it is not bad (~90$ for 3 months). The compounding pharm mailed the LDN to me.
FWIW my pain doc said 4.5 mg is usually the sweet spot for autoimmune issues, though it seems like every doc says different things sometimes with this. This paper has studied 4.5 mg in fibro with good result “At low doses (4.5 mg), naltrexone may inhibit the activity of microglia and reverse central and peripheral inflammation.”
good luck and i hope you get relief for your chronic pain issues.
Thank You @standing_cat. I still am wondering how much .5 mg would make that much of a difference, if I split a 10mg in half. Assuming it comes in tablet form. I may have to take what I get before I can convince my GP to make the extra effort. I can get compounding paid for by insurance but the doctor has to know how to make it happen. My pain specialist already figured it out with topical Ketamine for my Trigeminal Neuralgia. Which BTW takes 3-4 notches off the pain scale during an EM flare on my hands and face.
Most research I have read suggest 4.5 mg although I am not a Doctor, that’s the dosage my Daughter uses. You can get 4.5 mg from compounding pharmacies that way it’s a properly measured dose.
Please keep us posted , I really hope it helps you
@Davipot
Unfortunately I am only able to get insurance coverage for a compounded 5mg capsule. I do have a written script for 4.5mg from same doctor. I am in search of affordable compound pharmacy for cash pay. Next week the 5mg script should be ready for pickup. Thanks for the support!
And, thanks for reporting it here.