Hi, I am still awaiting diagnosis for what to me is almost certainly PMR. My GP seems happy to let me take a vast cocktail of other pills but won't prescribe steroids not least because amazingly my CRP and ESR tests came in normal. So I'm on Naproxen and paracetamol (two of each at a time), one amitriptyline and an omeprazole per day. This cocktail dulls the pain but still leaves me unable to do many things like put on clothes over my head, brush my hair.
First question: I didn't think to mention this at the time to my GP but actually I've been on a low inflammatory diet for a decade or so (don't touch flour and sugar or other processed stuff; drink homemade ginger tea everyday (1-2inch ginger root freshly ground) and I wonder therefore if it is possible that my normal level for CRP and ESR might be lower than average normal and the normal I recorded on my recent blood tests might actually be higher than MY normal. Afterall my GP has never before measured my CRP or ESR and so has no idea what it was 2 years ago before I got these pains. Anyone any thoughts on that?
But what I really wanted to ask is if anyone has any experience / views on alternatives to steroids. Since I'm waiting so long to get a referral to a rheumatolgist, I'm thinking I might as well try some alternative stuff in the meantime. I've had experience of fasting and it has always done me the world of good but after reading of someone who had PMR and did a water only fast for 10 days, recovered totally and 4.5 yrs later had still not had a recurrence, I felt it was worth a go. Afterall that's what animals do - if they feel unwell, they stop eating till they feel better. Works for them!
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Creas
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Sadly the answer is that currently steroids are the only option. I am amazed your GP does not know that or are they saying you don’t have PMR? There have been several people in this board who have tried other things, but they normally give in. I know two homeopaths who take steroids for PMR! PMR cannot be diagnosed as such, you just eliminate everything else, a lot of people get misdiagnosed when in fact it could be things. I assume the Naproxen is not working, as painkillers are pretty useless for PMR normally. Around 20% of people do not have raised inflammation markers (your ESR and CRP). This makes things even more difficult for doctors. My GP told me I had a virus (for three months!!) I could hardly move. In the end I went privately to see a rheumatologist who diagnosed PMR in thirty seconds!
Hi, I think I’d be more convinced of starving curing PMR if it read “many people” and not a person. Asking about alternatives to Pred comes up fairly frequently and there hasn’t been reliable good news yet. The immune system is complicated and involves all manner of parts of the body, including it seems the gut and fascia. It always worries me when it is spoken about as one thing especially when a particular regime is being put forward as the definitive answer. Yes, animals do stop eating but some die or don’t improve as well as get better. You can tell I come from the camp of nuturing one’s body and spirit and not shoving a spanner in the works like it’s a naughty machine 🙂. Why get ill is also an individual cocktail of life, genes, trauma, emotions etc so I suspect the journey is too.
I would not be happy personally to be maxing out on Paracetamol, amitriptyline, Omperazole and Naproxen; they have their own problems and the GP should not be thinking of this as a long term fix for side effects alone. They are not benign and if you do have PMR and its inflammation is not being comprehensively contained, you also run the risk of GCA. What is their plan, to leave you and hope it all blows away or do they have other diagnostic plans?
I have just posted this article to someone else about normal markers in PMR. I had GCA and was in A&E with my sight shutting down with markers in the normal range. However, my ESR was high for me at 16 instead of 3/4 on a good day. Diagnosis for PMR isn’t formed from just one thing like markers but some doctors don’t seem to have heard of that.
Since you ask, my GP after making me jump through lots of physio hoops giving me exercises which didn't help and were painful to do, did actually refer me to a rheumatologist but i've been warned that even if I was considered an urgent case, it would be months away. So I'm thinking probably not this side of Christmas. A friend of mine who is an experienced doctor told me I should have argued back and not accepted what the GP said. She also said that even though he didn't feel confident enough about it to put me on steroids, he should have phoned a rheumatologist for advice; that's now what GPs are meant to do if something is beyond them, at least as a first port of call.
Lots of GP’s manage PMR without a rheumatologist. A trial of Pred is often used by doctors to add another piece to the puzzle of diagnosis. Sorry, you’ve had such a lack lustre process.
Now you have asked the question you will see related posts…but although some alternative therapies may help with the add -ons of PMR, there is little else that will control the inflammation sufficiently.
As I said in reply in another post, I doubt the PMR the person who’s tale you tell had the PMR we recognise and refer to on here.
Sorry but for
-Afterall that's what animals do - if they feel unwell, they stop eating till they feel better. Works for them!
Good luck with that bearing in mind that PMR can last from 2 years to 6 years.
However if you do find a magic [or at least a more pleasant one than Pred] cure please let us know…..
The guy with the positive fasting experience did sound like he had a fairly severe case of PMR and had been diagnosed...but yes, I'll let you know if I find the will power to try that! My first attempt has included fruit and an evening Greek salad and even the occasional lager but it's an improvement to my previous diet (in the context of fasting!!). It's hard to go from normal diet to nothing just like that!
PMR is NOT the disease, it is the name given to a set of symptoms which can have a variety of underlying causes from post-viral aches to cancers. What we discuss as PMR here is most likely an underlying autoimmune disorder where the immune system becomes deranged and turns on the body tissues and attacks them causing inflammation. mainly in the attachments of soft tissues around joints. Similar effects might come from severe DOMS (delayed onset muscle soreness) after exercise, especially after a vial infection that hadn't been noticed.
Fasting on just water for that long really is a process that should be done under medical supervision and actually fasting done properly is not as they did it. It does have a role but i don't believe for a moment that could reset the immune system and stop the PMR we discuss here.
As for long term Naproxen - my local pain clinic expert is iffy about the small amount of NSAIDs I use for severe back pain, because of the longer term effects on heart and kidneys. No-one worries about the long term effects of pred in the same context. And I've been on it for 14+ years.
I know when we are diagnosed with something we don’t completely understand we want to try anything to make us feel better with the least amount of drugs. However, taking Naproxen and paracetamol can also do a lot of damage. You cannot sustain that regimen for years. Plus your PMR may get worse.
As far as fasting. I’d rather due something that’s proven to work. PMR and GCA are incurable. But steroids stop the inflammation and do it quickly. Of course, I had every side effect that prednisone offers but I still feel that it saved my life.
Interesting post. I also had normal markers, and my young doc tried to talk me into having fibromyalgia! She was hesitant to prescribe prednisone, but I strongly reiterated my textbook classic symptoms, cited the statistic that Piglette mentioned, that 20% of us do not have raised inflammatory markers and told her all the reasons fibromyalgia was not a reasonable diagnosis. She begrudgingly prescribed a pretty low dose of prednisone: 10 mg., and I felt close to 100% better within 24 hours.
Interesting that you raise the question of wondering if your already in place anti-inflammatory diet could explain the absence of high markers. Before resorting to prednisone, I did a 3-day fast of water and green tea, and then a very low carb/anti-inflammatory diet. Maybe that’s why my markers were not elevated. After that fast, and while eating the anti-infl. diet I did felt better (not 100%, but enough that I was very hopeful.) A month later, though, I was worse again, and I was in my doctor’s office asking for the prednisone. I wanted to be able to function.
The only alternative worth looking into (in my opinion— and I am not nearly as experienced as the amazingly helpful veterans here, like PMR Pro, DorsetLady, and Piglette) is LDN. But I think it has only been helpful at getting one off prednisone after the inflammation has been controlled. It worked for a friend of mine, and I’ve read of others. You can Google-research it.
Are you able to post a link to the guy who says a 10-day fast cured him?
Creas actually further to Lenore58 comments who has just reminded me [thanks] there are some posts on here about LDN -this is one -and from it you can see related posts -
It seems strange (to me) that your GP is happy to prescribe other meds but not Pred; unless there is a good reason that you shouldn't take it.
I was undiagnosed for about 9 months and my PMR was getting so bad that I thought I would be in a wheelchair soon. Then a 'new to the practice' GP put me on a week of Pred at 15mg/day saying that if the symptoms get better, then carry on taking it and if they don't, then it probably isn't PMR and you can stop after the week with no withdrawal effects.
It worked, like a miracle within about 4 hours of the first dose and nearly 3 years later I took my last 1/2mg.
I've had PMR diagnosed since Jan. 2022 and for 5 months before that. Took all the drugs you mentioned but was still completely incapacitated. GP at the time said it was old age. Fast forward to now. I am on all the drugs you mention, except ibuprofen instead of naproxen. These are for unrelated back issues. If I wasn't on 16 mg. pred for the PMR, which is under control, I would be bonkers trying to cope. Quality of life is very important.
What she means is that the only alternatives to pred that work reliably aren't approved on the NHS - too expensive probably as they are biologics. I am on tocilizumab/Actemra and for the PMR it is brilliant. But I live in northern Italy under a brilliant world name PMR expert rheumy - and he can use it, If I were to return to the UK, I would have to stop it.
Personally I would prefer to be on steroids that taper over time than your cocktail. Can you ask GP for a trial of pred for a couple of weeks to see if it helps your symptoms? (Knocking the Naproxen in the head as you do so.)
Can you go to a private rheumy for speed? Forum has advice on good ones.
I'm seeing a private Rheumy in Nicosia, Cyprus on Monday...will be interesting: I've no idea what to expect but she has a good reputation. I also had a full body deep tissue / sports massage today and didn't mention anything when booking or to the masseuse apart from shoulder/neck pain and I told her I'd shout if it hurt. It went remarkably well - she's a yogi masseuse, the only one in Cyprus, though she said there're plenty in the UK. They can unfuse fused vertebrae over a series of sessions (if they haven't been fused too long ie. probably not properly fused) - she's seen before and after MRI scans of people who'd planned to have surgery but ended up not needing to. She was actually from Nepal. Working out of my all time favourite hotel in Cyprus (I have a similar massage every time we are in Cyprus), Columbia Beach Resort in Pissouri. I'm going to have another with her in a fortnight before flying home - dep. on how I feel tomorrow morning!
I am not quite sure why your GP would not try you on a three day course or slightly longer course of steroids. I was told by my rheumatologist that my reaction to steroids was part of the diagnostic process. She started me on a low dose and within half an hour all pain vanished. This was after three month of analgesics which did next to nothing. Again not recognised by GP because CRP and EST was not in his opinion high enough.
I will be much more demanding of my GP next time I see him /her (it's never the same person). Even my doctor friend told me it was ok to disagree with them and be more assertive.
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