~PMR & trialing low dose Nalterxone - a therapeutic intervention for improved disease management~

[Megams]

Have been wanting to make some comments on the above trial I entered into briefly then stopped some weeks ago. Please note the following is a mere snippet only on my behalf.

Was approached by two respected professional folk well versed in their respective field of "functional + complimentary healthcare" & recommended I visit a Primary Healthcare Dr who especially specializes in LDN at his Functional Medicine clinic in East Auckland.

I might add that I did come across a post on this forum some time ago but nothing registered for me at the time - LDN will not be knew information for some but for others it might. It offers hope to certain folk with auto-immune issues (amongst others diseases) and I am still hanging onto hope it may work for me - who knows unless you talk to those in the know & look at the research.

I started an low dose .05mg (oral) with some apprehension, mainly due to new meds in my sensitive gut - this was about 3 weeks ago.

I responded very quickly to this low dose within 24hr period. A feeling of being clear headed, bright & rather normal - just like old times. Wow, hope springs eternal I felt.

By day 3, I developed a slight increased sensation of nausea even though taking this with food as opposed to an empty stomach which is recommended for it to do its job effectively.

I decided to stop taking capsule this to see if nausea would settle, as by this stage was going off my food.

I saw Dr Ric for a followup visit & he commented that I have a complex history to which I retorted that it was "nothing we couldn't sort together, good bad or indifferent". He prescribed a LDN cream version (also available in drops) which is used for children with ADHD. Only apply morning as can interfere with sleep for a time whilst body adjusts.

I had read up on the information regarding the many theories' & reasoning's plus studies/double blind behind the effectiveness of LDN for some folk (not all) & still trying to understand the technicalities of how it works - all fascinating information.

Some of you will know about LDN & I won't go into detail here but still early days for me as only just over one week since using the cream.

There is a book available edited by Linda Elsegood, "The LDN Book", Chelsea Green Publishing (2016) an excellent resource for LDN information. Also available as an e-book. Websites worth exploring - lowdosenaltrexone.org. + idnresearxhtrust.org

As I am still a work in progress and still trying to concentrate on reading this much awaited library book - all 3 copies are out at our Library with a long wait list.

I believe this is worth a look for many folk and suggest you read up on all the information. Hope this might help some of you who have been on this PMR journey - nothing ventured nothing gained.

Blessings one and all.

[piglette]

How is it supposed to help PMR?

[Megams in reply to piglette]

Hi piglette - did you take a look at the links to get an understanding on LDN?

Without me writing an essay on the information I have, plus a book I have only just started to read (the same page a dozen times), it might pay for you to take a look at what the links tell you plus info on the book I quoted.

That way you can make up your mind on what is presented & form your own opinion.

What I do understand & I quote : - Naltrexone is an oral Opiate & Toll-Like Antagonist medication that modulates the immune system to improve health outcomes in many diseases: include autoimmune & inflammatory illness, cancer, hormonal dysfunction, autism, as well as chronic fatigue.

Of course there are more listed but I don't know enough to want to write a chapter here.

If I appear to benefit from trying LDN or not, will post the results here.

It will take time to very slowly build the dose & by the way this is NOT and I reiterate NOT a replacement for steroids, my understanding is that it works alongside until the LDN is sufficiently working in the body (if it works at all) with consistent ongoing steady improvements taking place over a period of time.

[nymima01 in reply to Megams]

TY for providing the information! I have 3 auto-immune conditions now, Hashimotos, Raynauds and PMR. I am in a prednisone protocol for a year to hopefully see remission with the PMR. My body was a runaway train and the prednisone helped me so much! Anyway, I have wondered what would happen when my immune system started attacking itself again once off the prednisone protocol. I have a great Rheumatologist and I will discuss this with him when the time comes. I will research in the meantime. Thanks again for taking the time to write!

[Megams in reply to nymima01]

~Good idea to discuss this with your Rheumatologist and pleasure to be able to pass on the information recommended to me.

Nothing ventured nothing gained ~

[piglette in reply to Megams]

I remember when Naltroxene was introduced by du Pont to help alcohol and opiate addiction. I understand that it does seem to help people with fibromyalgia and also it has been said to help weight loss. I have not heard how it can help people with PMR. The thing that worries me is the way it is introduced as all things to all men, with very little reasearch. I believe also there is a warning about taking it if you are using an immunosuppressive medication such as pred.

[nymima01 in reply to piglette]

Since PMR is a form of RA, I thought that it would be relevant to treating PMR. I'm not sure either if one can do both - prednisone and Naltrexone, but my RA would know. My concern is really when I come off the prednisone protocol in October and I have not gone into remission. I don't like to count my chickens before they hatch, but I am already feeling my old achy, fatigued body returning every time I wean down on the prednisone. I held good at 10 mgs of prednisone, but 9 and 8 have been noticeable! I crash every afternoon now at 4 pm. I am hopeful there may be more to help my body help itself. Thank you for your thoughts!

[HeronNS in reply to nymima01]

I don't think PMR is a form of RA. I know that in some people RA presents initially with symptoms that are like PMR, but lack of continued good response to pred, as well as additional symptoms, leads to further investigation and sometimes the diagnosis gets changed to late onset RA. So a different disease with similar symptoms, just to confuse the doctors, not to mention their patients!

[nymima01]

Just read up on the info you provided! I am very hopeful about this. The lower the dose of prednisone I wean down to every month, the more I feel my "old sick body" returning and this is causing me great concern. I think I have seen this drug in an ad for tv - no??

[Megams in reply to nymima01]

Hi nymim01 - yes it seems the lower we go the more we feel the arthritic joints plus other aches that we didn't quite notice prior to weaning.

I live in NZ and had never seen this drug previously other than knowing its used in a far higher dose to help alcoholic's who go into recovery.

[HeronNS]

ncbi.nlm.nih.gov/pmc/articl...

[jwiersma]

I have been on LDN since Dec 2016 to help me tolerate PMR. And yes it does help remove much of the discomfort plus gives added energy. I just increased my dosage from 1.5 mg to 3.0 mg last night. I take it at 9pm every evening . The only downfall for me I get mild insomnia from it. The only time I took steroids was for 5 days to diagnose the PMR. It was my decision not to continue taking the steroids. I have had PMR since January 2016. When I was first diagnosed my sed rate was elevated. I just had had it checked again all numbers were normal. I try to eliminate all gluten and minimal dairy products.

[Megams]

Hi jwiersma - interesting reading your post & thank you for reply. Glad to hear you are tolerating the meds OK.

Hopefully some of our other fellow PMR friends will find your post helpful - the insomnia is part & parcel of side effects so I rub in my cream at breakfast time. That has indeed helped altho it is better taken/used at night around 9pm when it is reputed to be more effective.

I am still very new to this & taking it very quietly in the hope that my body will tolerate it. Of course I still take my steroids with the aim in time to slowly reduce if the LDN shows definite signs of working................... this is all unknown at this stage but will hold onto hope & be guided by the Functional Medicine GP I am seeing.

I been overwhelmed with other issues over last week & a bit but I will get back to our group once I can focus my attention on all the research & hype presently displayed about it in Auckland where I live.

Kind regards

[30048]

thank you for this information. i bought the book and am wading through it. hoping that it may have promise. If not for me ..then for my grandchildren. I have one with Crohn's disease and one on the autism spectrum who also has Celiac disease. the post about the rare diseases that someone else shared was also interesting. I never realized until that post that we were just a category under the general term Vasculitis. it is wonderful that people share so freely. Again my gratitude.

[Megams]

~ My pleasure - it was through the kindness of 2 caring folk who work in the holistic field of medicine who recommended I take a closer look for my own health issues, PMR being the main one

Blessings ~