Any ideas: Naltrexone vs Prednisone

[Sunny465]

Hello people. I have been getting better as per pain management on the whole. Legs still ache at beginning of winter in the southern hemisphere. I was told I no longer have PMR tapering off Prednisone after 22 months as CRP 1.5 to .9 along. After feeling well for 2 wks having come off the pred. I began to suffer. I was very stiff and slow in the mornings to get going. Old aches and pain returned after a long flight. When I returned to NZ after 6 weeks I had an adrenal function test which turned out fine. Next step was to address possibly the true source of my difficulties developing over time and post pred. Journey and inflammation ( as per neck-spine- sacral areas along with referred pain). I keep up with my aqua stretches among other things to maintain a range of movement. I still read the support sites from time to time. I recently came across a report from someone on a PMR support site that named an alternative drug for PMR called LDN or Low Dose Naltrexone. Any knowledge or experience regards this - LDN ? Just curious and in case the socalled PMR returns.

Thanks and peace.

[powerwalk]

Try putting naltrexone or LDN in the search box. This came up not so long ago as a topic. I don't think it looked too favourable for pmr.

[PMRpro Ambassador]

LDN is NOT an alternative drug for PMR - I have discussed it with a top PMR rheumy in the UK and she says they have looked at all the claims and are not convinced. I suppose if you can get it and afford it it might be worth trying - it is used in parts of Scandinavia I believe but the person who was given it by her GP never came back and reported how she got on. If it cured PMR symptoms I'm sure she would have! It is unlikely to do much harm - except possibly to the wallet contents!

What you describe is a very typical scenario: the doctor decides that because the blood markers are low, the PMR is gone and gets the patient to stop pred but a few weeks later the PMR symptoms reappear. The truth was that the disease activity was indeed very low and even a very low dose of pred was enough to keep it under wraps. But just as a dripping tap will eventually fill a bucket if you wait long enough, without a small daily dose of pred the inflammation built up to a level that causes symptoms.

The blood markers were low simply because there was enough pred to keep the inflammation down. That isn't the same as the a/i disorder being burned out.

OTOH, some people find they have these sort of symptoms as their body gets back to normal. On that basis you would expect them to remain stable or improve over time, even if it is slowly. If they are due to continuing PMR they are likely to get worse - and if that happens I would want to go back to a very low dose of pred. Many rheumies appreciate this conundrum - and keep patients at a very low dose for a very long time. If 1mg means you don't show symptoms, I'd accept it for the rest of my life rather than risk a return.

[Ruadh]

Hi Sunny 465 -

I have been on LDN for several years now - since 2004. It dampens down inflammation. There is much information re LDN on the internet. LDN is a registered British Charity, LDN(dot)org. LDN Research; LDN Trials; lowdosenaltrexon(dot)org. LDN is not a snake oil, nor is it expensive, in fact, pennies - which is why pharma has tossed it to one side, though have used Naltrexone within a drug - forget name now.

LDN has proven worth in many areas, one for crohn's disease : good results, Penn State. Also for RA. In fact, a very good friend is on LDN for his very bad RA. He is doing very well indeed. LDN is his main medication. In addition, amongst many diseases, LDN has shown positively good results for MS - excellent results.

For extensive information and links, see :-

LDN Research Trust - Low Dose Naltrexone

facebook(dot)com/groups/LDNRT/

Is necessary to have a prescription for LDN : the research trust has a list of prescribing doctors - UK; Ireland; America; Canada; Australia; and think France - no doubt there are other countries. I get mine from the UK. Yes, I have a prescription. Prescribing doctors, the Trust has a useful list - ldnresearchtrust(dot)org/LD......

Every so often I take a holiday from the LDN - am on one at the moment. I started at 1.25 mg, then gradually moved up to 4.75 mg, then back down to 3.25, which is the level I continue to take. I have an inflammatory spinal disease and gut probs. Works in those areas. Did not work for PAD nor for tinnitus.

Hope this helps - any questions, please don't hesitate, but the Trust website will answer all your questions. A very knowledgible site, with info backed by the medical profession. Dr David Steel MP, backs LDN in parliamentary question time and in debate. International symposiums are held on an annual basis, the last one was held a few weeks ago in the USA. In addition, there are weekly radio programmes that one can tune in to. All details on the Research Trust site.

Be well, take care.

P.S. LDN might help with PMR but am very doubtful if you could 'replace' Pred with LDN ! In fact, I would not even try that route. Please discuss *with both your own medical team and with an LDN accredited / knowledgible doctor 'before' even going there. Gather information first. Then you may be in a position to make an informed choice of whether to use LDN as a 'support' therapy, but please, not as an 'instead of'.

Take care.

[Sunny465 in reply to Ruadh]

Thanks for this info. I have been for a postural assessment. Old injury in the neck and mild lateral curves x5 - a spur in the lumbar, pelvis doing something on one side. Generally seen as a R side imbalance though i walk well and have maintained good posture; referred pain can occur, stiff when sitting too long and achey legs after sleeping. Warmer weather is always better for me. PMR may not be the problem. But was treated for this.