Diagnosed PMR April 2016 after a year of fatigue, muscle weakness and pain in shoulders, hips and thighs. Got worse in February after being given the antibiotic Levofloxacin for an ear infection. Took one dosage at night and could not move out of bed the next morning. Severe muscle aches - I blame this drug.
Finally insisted on seeing a rhuematologist who diagnosed me with PMR. Immediate results with Prednisone but the drug has caused me to gain 20 lbs, swelling and feel mentally crazy. On 10-15mg daily. Am seeing a holistic MD also who is trying me on naltrexone (day 3) plus the 5mg prednisone. Weaning off the prednisone hopefully.
In a week starting a higher dosage of naltrexone. Has anyone had good results with this treatment? So far feeling good - just afraid of giving up prednisone completely.
Also doing a dairy free diet - mainly protein and veggies. Trying to exercise which as you know can be difficult.
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sweiss72
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This question comes up every so often and the first time it did the research the support group did turned up nothing. There is one lady in Norway (who is on one of the forums but I can't remember which) whose GP has given her low dose naltrexone - she has never reported back how she is getting on that I have seen. There have been no controlled studies using it so the only reports are anecdotal.
and I'd like to emphasise one of the points he makes - LDN is proposed to boost the immune system. Your immune system is already working overtime and attacking your body as foreign and that is part of the reason that pred works, it damps down the immune system. The last thing you want is to BOOST it. I don't know if it is thought to work as a painkiller - most don't work for PMR though, even opiates.
You shouldn't really be on 10-15mg daily - you should have started at 15mg and then started to reduce slowly (we say 1mg at a time) towards finding the lowest dose that gave the same result as that starting dose. If you tried to jump from 15 to 10mg that is likely to have caused problems.
Between us we've probably tried all the exclusion diets there are for PMR - I've done no alcohol, I was gluten-free when the PMR developed (I'm allergic to wheat and in the UK that means going gluten-free) and very low dairy (can't live without a cup of tea in the morning!). None of them made any difference, as I say, PMR hit when I was gluten-free. The only thing that HAS helped is very low carb to lose weight and avoid the midriff/moonface/buffalo hump fat deposits. Others have found the same.
Good luck with the naltrexone though - it is fairly innocuous I imagine as it is approved for use in drug addiction. But there are no studies that show it works in anything - and my feeling about any regimen that is claimed to work for such a wide-ranging list of illnesses must be questionable. But that is my opinion.
Be careful though - having been on above 10mg pred for 4 months is long enough to cause adrenal suppression. Dropping precipitately to 5mg may well cause problems there so be aware of the signs of an adrenal crisis. That can happen even at higher doses than 5mg if you are under stress - and it can be life-threatening without prompt treatment. So don't ignore excessive fatigue and the other signs that may manifest.
Thank you for the info - I meet with the rheumatologist on Monday & will discuss the prednisone weaning more. Also will try the low carb diet. I have a problem with many drugs & can take a quarter of what normal dosages are for most people. I don't drink or smoke but have found stress will trigger the pmr - it can wipe me out for a couple of days. Appreciate your email - I went for over a year with doctors prescribing x-rays, mris' and physical therapy when the therapist said she did not think it was my joints. You have to be your own advocate in health care.
I didn't even get that selection in the 5 years I was going and saying "There is something wrong, don't know what, but it isn't right". It was always "Your bloods are fine..." But eventually I did work out was it probably was - and 15mg pred brought a minor miracle in 6 hours! Not that the rheumy wanted to listen - but a different GP did. No such problems where I live now - all in agreement and it is up to me how I sort the dose.
Hi. I've been on low dose Naltrexone for about 2 months. After I had a bad bout of intense fatigue lasting several weeks, and starting to feel depressed, my rheumatologist suggested I try it. She said it has some mood stabilizing effects, and thought it would help with the fatigue and pain. She hoped it might also allow me to reduce the prednisone.
I'm taking 4.5mg each night. I do feel better taking it. The debilitating fatigue is gone, too (still have low energy and must pick and chose what I can do each day). But, I have not been able to reduce from 5.5, and in fact have recently gone back to 6mg after weeks of feeling like I was just barely managing symptoms, and blood work which showed inflammation increasing again.
The only side effect I've noticed was vivid dreams for the first week or so.
I'm going to keep taking it for awhile and see what happens.
PmrPro I am in Illinois, USA. I have to have it compounded at a special pharmacy in the state and mailed to me in order to get the 4.5 mg dose. Very inexpensive at $18 per month. Apparently the normal dose is 50mg when using it for drug withdrawal and that is the smallest size regularly available tablet.
My Rhumy said she has several of her RA patients who use LDN successfully. Some it helps, others it hasn't. She use to work in the city of Chicago which has a large African American population, and rarely saw PMR. Then she moved her practice to the suburbs where it is mainly Caucasian and found more PMR cases. Unfortunately, she just moved again to another state-Atlanta, GA; so I will need to begin seeing a different doctor in the same practice. I'm in no rush as I have prescriptions for my prednisone and LDN tablets for a few more months, and I have been adjusting my own pred since last fall. I also have a friend who tried LDN for her fibromyalgia, but quit after a few months when she didn't think it was doing anything- I think it is hit or miss. I took about 10 days off recently to see if it made a difference. The changes were slow and subtle so I didn't notice much, but definitely felt better again when I started taking it again. So I will stick with it.
I was told PMR was a caucasian with european ancestry over age 60 disease. According to Ancestry.com, with 98% European DNA, I fit that bill. I'd be interested in who your doctor was that just moved to the Atlanta area.
I have PMR for the second time having been clear for 2 1/2 years. To avoid steroids I am taking 5 mg Low Dose Naltrexone plus plant sterols , high dose magnesium and the usual vitamins , C 1000mg b.d. , vit D3 20 mg ( must take this if on LDN ) plant derived minerals , omega 3, 6, 9 , multi B
I am pleased to report the pain level is so low I can virtually lead a normal life, certain movements hurt a bit but nothing like last time.
For those of you who don't know, only a few doctors prescribe LDN you can get help. From Dicksons Chemists in Glasgow, tel. 0141 404 6545 to find a doctor look at ldn- international.com
LDN is used successfully for MS, certain cancers , Parkinson's , Fibromyalgia, but PMR is only beginning to be researched., basically autoimmune disease
Hi are you on pred along with the other meds you posted. I have had par for two years. I was feeling pretty good on 7 but my rheumy insists I continue to reduce. I am currently on 5.5 and am miserable, pain is horrible.
Thank you. When on the prednisone previously, did you gradually decrease your dosage? I am on the first week of Naltrexone then move to 4.5mg, also on the same supplements except magnesium as I have high levels of it.
In Atlanta, we have to have the Naltrexone compounded & it is running about $80 US/month.
I'm using LDN successfully for PMR-onset rheumatoid arthitis/disease. See my other posts on NRAS. Also see LDN Research Trust community (based in U.K.), see LDN 2016 conference (have to pay for access to web streaming archive) or The LDN Book, by Linda Elsegood--a LOT of information there.
Titration and dose are important, particularly if you are very sensitive to drugs in general. My optimal dose is 2.5 mg, and I titrated up to it from 0.5 mg, adding 0.5 mg every 2 weeks. Can't tolerate 3 mg; tried twice. If you have any thyroid conditions, you need to be very careful with dose, some folks never get above 0.5 mg. Some conditions are generally treated at 4.5 to 5.0 mg, but each person will still be different.
Sorry, no experience with weaning off pred with LDN, as I never took pred, even during the 9 months before my dx got changed from PMR.
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