Update to my PMR vs naltrexone comments posted here:
As I concluded at the end of those comments, I actually have polymyalgic-onset rheumatoid arthritis/disease. I've been posting on NRAS. Low dose naltrexone is working very well for my RD; I have avoided prednisone and standard RD drugs, and my blood test results (including my sed rate and CRP) have dropped significantly. See my other posts for more.
I follow the practice of calling this rheumatoid disease, because it is systemic, and I've actually had the non-arthritic sx for many years, as mild undifferentiated connective tissue disease. I guess this is not uncommon. The cough was likely due to the lung aspect; I have nodules in my lungs. I've had vasculitis/Raynaud's for many years. My shoulders especially have been very crunchy for years, and I had PMR-like shoulder inflammation flares for several years a decade-plus before this erosive RD phase, despite (up to the erosive RD onset) being quite flexible. It affects tendons and muscles, too, not just joints, resulting in my still not being able to lift my arms above 60 degrees to the side. (With PMR, you can usually get to 90 degrees.)
Anyways, my message to the PMR folks is to keep testing for anti-CCP (also called ACPA) as it can develop or increase over time--6 months to 1 year once you are in an "attack". If you have it, you may not have RD yet, but your chances of developing it eventually are very high. If it rises quickly, you are likely headed into the erosive phase. PM-onset RD can be difficult to diagnose; many doctors don't look for it if there isn't a significant erosive arthritic component yet. It is also something you need to catch quick, as it can progress quickly and do a LOT of damage including killing you (cardiac and respiratory aspects). Rheumatoid factor is also helpful, although less specific.
Good luck, folks. I found this community to be very helpful when I had the tentative dx of PMR. I now know local folks who've had PMR, too. I'd never heard of it before I got it. The disease needs a lot more exposure and research. I'm glad to see that other folks are trying LDN for PMR!
Julie
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About 1 in 6 patients first diagnosed with PMR go on to have their diagnosis changed - mostly to LORA. It isn't known whether it does actually morph or whether it is simply a missed diagnosis. More often than not these patients are unable to reduce their pred dose significantly and I suppose it is the main reason for being under a rheumatologist - except even they don't get it right either way.
PM-onset RA is actually a subset or type of LORA; I mentioned it specifically because it's the one that mimics PMR and so could easily throw off diagnosis. I copied the following from a study I found on the NIH web site here in the U.S. (they used the older term Elderly instead of Late Onset, hence EORA; I think the term was changed because those of us in our 50's get it, too, which isn't really "elderly").
"EORA presented a more frequent acute onset (33.6% vs 13.6%; p < 0.05) especially if rheumatoid factor was absent. This subset also showed more frequent polymyalgic onset. Constitutional symptoms (fever, weight loss, fatigue) were more frequent in EORA patients without differences between seropositive and seronegative patients. The distribution of involved joints showed a significantly higher frequency of shoulder involvement in EORA (64% vs 38%; p < 0.05) and of feet involvement in YORA (25% vs 52%; p < 0.05). Hands and wrists were the most frequently involved joints in all patients."
We were thrown off by the last item, as I had nothing in my hands until almost 9 months into the disease, about the time I was getting re-dx'ed due to the increased ACPA. And now I'm on LDN, the mild and roving hand inflammation I did have only appears rarely.
To address another dx criteria that other folks have mentioned, steroids (and other anti-inflammatories, like NSAID's in high doses) may be helpful for LORA, particularly in the short run. Response to steroids has been removed from the EULAR criteria for PMR dx, as it has not been found to be specific enough to PMR.
Quite a few experts still support taking it into consideration - but only with a moderate starting dose. The most recent recommendations now say up to 25mg but for some years the recommended starting dose was 15mg. Where a patient then showed a dramatic and speedy improvement it was felt to suggest PMR - if the symptoms only improved a small amount, took a long time or difficulty was then experienced with reducing the dose then it was felt further investigation should be done as another cause of the symptoms was likely. If a much higher starting dose is used or there is a poor response to a low dose, it clouds the picture and you can't tell what may be going on. If NSAIDs work I'd be inclined to feel it WASN'T PMR - it so rarely helps.
However - whatever EULAR says - it often appears I know more about EULAR's publications than most GPs ! And it seems at times, even rheumatologists!
Maybe I wasn't clear. I'm talking about specificity. What EULAR concluded was that there are other similar maladies that can respond well to steroids. RF also has a fairly high rate of false positives, i.e. just because you have abnormally high levels doesn't mean you have RA; a family member could have it, or you could have another condition (now or later).
With the discovery of anti-CCP (ACPA), we now have a much more specific test for RA. It is still not 100% (very little is), but 80%+ of RA folks will eventually have abnormal ACPA, with a much lower rate of false positives than RF, and those are usually Sjogren's or other disease closely related to RF. My post is to encourage folks to request the ACPA test if there is a question of their dx (or frankly, since it often predicts later RA) as part of the PMR dx or monitoring. The other factors in the 2012 EULAR PMR dx criteria have also been found to have more statistical specificity than steroid trial.
Yes, some rheumatologists will still use response to steroids along with other factors to help guide their dx. But if a rheumatologist demands that you do a prednisone trial to "prove" the PMR dx, recognize this is no longer gold standard, and especially if, like me, you would have a very difficult time both on steroids and getting off them, it isn't required for dx. (and, as I did, request a first/repeat ACPA) And if you do the trial, and the doc tells you since you react so well to prednisone, you can't have RA (or whatever), that may not be true.
The major reasons to keep or get folks off steroids who have RA as opposed to PMR is that RA is at this point not curable; the goal is to reach remission. Prednisone helps while you take it, but doesn't help RA folks reach long-term remission, has bad side effects, and as you noted, can be difficult to reduce/stop. So the rheumy wants you on as controlled DMARD trials as possible (since there are now many options and combinations) which are more likely to help reach that remission ASAP. Most erosive damage is done in the first 2 years (especially acute onset), and reaching remission within those 2 years strongly correlates with a better RA course for the rest of your life.
Interestingly, even once I had the high ACPA results and my dx was changed, I was told (by the nurse) that the doc still would want me on prednisone (plus methotrexate & anti-osteoporosis drug) because my sed rate and CRP were so high. I didn't take any of that (or return to that doc), instead I found a naturopath who would prescribe LDN. Four months on optimal dose, and my sed rate dropped from 80's & 90's to high 40's; my CRP dropped to normal. I'm not saying that will happen to anyone who takes LDN, just that it turned out I did have another option.
I think I was quite clear - but there are many rheumies who are not. And the likelihood of being given LDN in the UK is pretty small unless you go privately to a very small number of doctors (where n probably equals 1).
In that sense RA is no different from PMR - all the pred does is manage the symptoms in the hope it will go into remission sooner or later. The difference is that in PMR there is only pred that can be relied upon to manage the symptoms - DMARDs may help some people but I suspect it is when the person has either RA or a mix. In about a quarter of patients the PMR doesn't go into remission - or takes a very long time. I suppose you could postulate they have LORA.
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