Is there anyone who can evaluate the claims of this drug? It claims to be 'a drug that may help regulate a dysfunctional immune system in auto immune diseases'. It lists vasculitis in the list of conditions it may help. I haven't done much except briefly glance but would appreciate the thoughts of others. Information on these websites:
Ayla
Hi Ayla.
I must admit I hadn't heard of this drug being used for vasculitis patients and most of the information tends to refer to its primary (full dose) use as a treatment for opiate mis-use/dependency. For that reason alone, it's clearly not suitable for anyone on opiate based analgesics (I believe co-codamol, Tramadol and Oramorph all fall into this category) and there appears to be caution by NICE by suggesting low dose administration must be done with appropriate pharmaceutical understanding.
I can see why it might be considered to potentially benefit vasculitis patients although the true 'mechanics of the disease are still not fully understood. The drug causes an increase in the levels of opioid growth factor (OGF) which 'controls proliferation of all cells, including immune cells (T-cells and B-cells)'. These being the ones depleted by targeted immuno-suppression drugs such as Rituximab and in turn the disease is effectively 'switched off'. Unlike traditional chemotherapy, the process this drug produces is immuno-regulatory than directly immuno-suppressive.
I found a number of reports on MS support sites which suggest it may be efficient in reducing fatigue but whether the same processes are involved in vasculitis patients is unknown. Some of the side effects described don't sound particularly pleasant and anything which causes problems with sleeping is something I'd be very concerned about.
A quick search of peer reviewed literature didn't reveal any research studies involving vasculitis sufferers and I'm always particularly wary of 'amazing results!' websites, particularly American ones.
I'd be interested to hear the opinion of others here who may have used the drug and of those who have a much better understanding of medicine (John?!). Given an opportunity I'll ask David Jayne and Lorraine Harper for their considered views when I hopefully meet them in a couple of weeks time. MY own consultant is also pretty switched on and accessible so I'll ask him too.
Clearly you're being rightfully cautious and I'm certainly interested to research this further. In the meantime and out of curiosity, was this suggested by your GP?consultant or did you come across it by other means?
Healthy wishes.
Martin
Hello. I have MPA vasculitis and have recently undergone plasma replacement in hospital followed by a course of rituximab blood infusions. I am about to start taking either low dose naltrexone or nalmafene not for vasculitis but for I have a problem with binge drinking where i easily go without alcohol for 4-5 days sometimes 2 weeks and then i get cravings and once i start drinking i find it very difficult to stop disregarding all consequences (there have been many). I believe that i have no future unless i do something about the alcohol problem and naltrexone in doses of 50-60mg 1 hour before drinking or a tablet or nalmafene 2 hours before drinking are supposed to remove the cravings and the feeling of wanting more making it so that i can drink normally without the fear of getting in a state and causing hurt or embarassment to myself or anyone else. Now i am wondering if the naltrexone will have a bad effect on my rituximab treatment if it stimulates my immune system when the rituximab was supposed to turn it off..??
Thank you, Martin. As usual a very instructive reply!
I found this mentioned in a current blog on the Thyroid Health Unlocked site. It might be worth your joining it just to read the replies. Apparently there is currently an investigative parliamentary group, under the direction of Nia Griffith MP, looking into providing this treatment on the NHS, I presume for a range of auto immune diseases.
Interesting. Like you, I am sceptical right now (surely Dr Jayne would be using it if it was effective and cheap to prescribe, as is claimed?) but hope burns eternal in the vasculitis patient!
Ayla
Hello Ayla,
Yes, I have take now, low dose Naltrexone. I took for 4 months and then stopped it, but I didn't notice much. It can work for autoimmune dis-ease and is very effective with MS. I have Churg-Strauss Vasculitis, however I stopped all meds after about 5 or 6 months and now just have a rescue inhaler,not because of Naltrexone,but because I changed my entire nutrition, all organic foods, good supplements and got away from the Methotrexate before it destroyed all of my cells. The Naltrexone is such a low dose, you will not feel a thing, I noticed no difference whatsoever. Truly, it is very low and certainly is worth trying out as it is far less harmful than Prednisone or DMARD's, haha, I'd be far more cautious about those drugs than low dose naltrexone. If you decide to use, make sure you use a good apothecary that mixes on a regular basis, Good luck to you!
My pleasure Ayla & interesting to see it has been prescribed for a vasculitis patient (thanks for relating your experiences Lilly).
I've just spoken to my consultant at Carlisle and he's going to make some enquiries although he rightly points out, it needs randomised trails with placebo controls to 'prove' its efficacy but he's open to the idea that if it works for you, without negative side effects, then why not try it.
I'm sure nutrition along with a holistic approach can do much more for us all (just read Patrick Holford's Optimum Nutrition Bible). I'm becoming more aware of how much of a mental battle this disease presents and want to take things further with the likes of Mindfulness and maybe, CBT.
I'll keep digging and asking questions but it might be worth posting your enquiry on the V-UK FB group (or I will if you're not on there) as that may produce other vasculitis patients with experience.
Best & healthy wishes to you both.
Hi Martin, I am sorry, I did n't see your post until now. I have grown up in a family who has always used holistic or alternative healing first. I believe both Allopathic Medicine and Homeopathic treatment are important, but I really prefer to use Allopathic Medicine for emergencies and when nothing else can work. The Prednisone kept me alive, the pain medicine helped me too. If the two modalities worked together, I really believe there would be better patient outcomes. Treating symptoms can't give us health, it is a temporary placebo. For me getting my body in balance, building up my immune system (because now is when I really need it) and avoiding foods that are processed, adding supplements, all have really helped me to get back in balance.
I am working now and doing the things I enjoy. Also, my energy levels have improved so much. I really thought I wasn't going to live in 2007. I worked and I am still working on getting better and maintaining my health as I move forward.
I also wish the best to you both. Keep us posted on your healing journey.
Thanks, Martin. I have looked at thyroid uk users comments. There seems to be quite a few who report excellent results with this treatment. I am glad you are talking about it to your consultant and that he is open minded enough to consider its use.
Please post something on the vasculitis group's facebook site, that is fine. It will be interesting to see if anyone else is on, or has tried, this.
Perhaps also worth asking if anyone has tried to control their disease through diet alone?
I am grateful, as I am sure all of us on here are, for your thorough investigation of this and other topics.
Ever looking for a magic wand!
Ayla
I think eBay has run out of magic wands!
Thank you for this latest information, Martin. Very comprehensive. It seems that hopes are dashed once more but I wouldn't rule anything out until I had tried it myself. The medical profession can sometimes be a bit traditional and self protecting. Having said that, it was always a long shot and I am not planning to give the stuff a go in the near future.
Am in the US at the moment and am planning to see what the local Naturopathic doctor has to say on vasculitis, both as part of the auto immune spectrum and for me personally. Will keep you posted! I am not holding out a great deal of hope for a miracle cure, of course, but it would be good to be able to ditch at least some of the drugs.
Thanks, from all of us, for your work on this.
Ayla
My pleasure. For me this 'space' is somewhere we can share experiences and knowledge whereby the total is greater than the sum of the parts 
Whilst there's no evidence that this works I totally agree with lillylangtree's ideology and believe there's no such thing as a physical illness. MY experience with clinicians over the 5+ years has been that the best ones are those that 'treat' me as a person and not just address my illness.
My local consultant (who's a perfect example of someone who treats me holistically) had heard of the LDN but wasn't aware of anyone using it. I relayed the conversation with the neurologist and his comment was not to ignore the placebo effect. Whether it would still be a placebo if you knew it couldn't work in biological terms I'm not sure but the effect has been proven scientifically.
I believe it's important we all remain open minded about any avenues which can improve our well-being. As someone with a background in biological science I am well aware that homoeopathy doesn't stand up to rigorous scientific scrutiny but I've seen it work not only with people but with my own dogs. In their case I can't have even been a placebo effect as a 10 stone Newfoundland does not exactly notice a sugar pill the size of a grain of rice!
I've just experienced quantum touch healing which was quite beneficial as was reiki in the past and will pursue both again very soon.
After all I've said, I guess we don't actually need a wand - an imaginary one will do quite nicely!
Healthy wishes to you all.
Your help is needed - COVID19 
Does anyone take methotrexate in two doses?
How to cope with a cold?
