medical evidence for anti-inflammatory diet/no steroids?

sorry that sent before I had finished - the perils of typing on a smartphone! So yes, I was saying that thoug I am naturally sceptical about scientifically unproven methods - I won't be trying Devils Claw in a hurry! - I am sure there is something in the concept of anti-infammatory foods. In any case, even if it's not going to cure us, it is definitely a healthy diet!

I have found the PMR/GCA north east forum incredibly helpful and informative - and you certainly wouldn't be surprised to get an answer there!

Best of luck with it all

Angiebabie

Re anything I "have found particularly helpful" among AI foods, definitely oily fish (including the bones of the sardines - good for our bones!). If I went for a couple of weeks without the fish in particular, I would notice a difference in my pain levels.

I agree with Dinah's recommendation of ginger and beetroot (not liquorice for me as it's known to increase BP, plus at a recent support group meeting a Dietician recommended advice should be sought before taking certain herbal remedies due to potential drug interactions and liquorice root extract was among them).

Turmeric is another favourite, plus asparagus, avocado, garlic, fennel and melon.

I have avoided processed meats and reduced my sugar intake as much as possible - as sure as eggs is eggs I always suffer increased pain after the Christmas period which I put down to my intake of ham and sweet foods.

I do repeat here though in case anyone is looking in and hasn't read previous posts, these AI measures will not cure PMR but from my experience they can definitely assist with reducing our pain levels along the way. In the absence of a cure, at present steroids remain the most tried and tested treatment for reducing the inflammation of PMR - without them we are at risk of even worse health problems.

When we take steroids, our adrenal glands become suppressed from making their own natural steroids (cortisol), so it's best to reduce both coffee and sugar intake as they stress the adrenals, especially when we reach the lower doses of Pred because that is when our adrenal glands will be desperately trying to kick back in again with their normal production.

Do look at the forum Dinah has recommended - you will get advice galore, and a laugh when you need it! Catie, Carol, MrsK and myself are there, including many other regulars (although I'm in disguise under an alias! )

Hi Dinah and Angie and welcome to the club!

Not a lot to add to what MrsO and Nefret have said really in terms of the basics. But as the others know - I will anyway.

I had had PMR for 5 years before it was named - not by the rheumatologist who was adamant it was some other inflammatory arthritis despite the almost instant response I showed to 15mg pred, being able to walk downstairs normally for the first time for months about 5 hours after taking the first dose. In that first 5 years I had managed with the odd dose of ibuprofen for the worst excesses of pain - not that it did a lot, just took the edge off - together with a fairly big gym programme involving acquaerobics every day Monday to Friday and Pilates and yoga which dealt fairly well with the stiffness. Then it suddenly felt as if I had been hit by a bus and could only get out of bed with extreme difficulty and the joint pain never went away. I had 6 months of that before I got the relief from pred, a 6 week course of two weeks each of 15, 10 and 5 mgs a day. Withing 48 hours of stopping the 5mg (which had just about held it) I was in as bad a state as ever, if not worse. The rheumy ignored all that and it was my GP who happily said it sounded to fit all the criteria as far as she had always been taught. So a specialist doesn't always know better in terms of what the patient needs. I've never got down as low as 5mg again - mainly due to trying to force a reduction as going below 8mg/day now allows a flare to start up and the big experts all say the primary cause of a flare is reducing too far or too fast and yoyoing your dose allowing that often makes it more difficult to reduce longterm. I was felt to be too young (it started at 53-ish) and have never had raised blood markers ever, even when I couldn't move. That applies to 1 in 6 of patients, the same is the case for GCA.

The other forum has a whole section of my posts which others have found helpful and that also includes information about research and info from medical textbooks and papers about PMR (no wibble, I promise). Many of them were also on here but were lost when they re-vamped the site earlier this year and we also lost a lot of contributors because of the problems there were at the time. The main centres for research on PMR in the UK are the rheumatology departments in Southend and Bristol and in other parts of Europe there are big groups in Spain and northern Italy. Not a great deal of useful research is being done in the USA although the Mayo and Johns Hopkins have good info on their patient education sites.

PMR is not the disease - it is the name for the symptoms (many painful muscles but in medical latin) of an underlying autoimmune process. It is not know what causes the immune system to go mad and attack your own body but it does - as it does in type 1 diabetes, rheumatoid arthritis and multiple sclerosis. Because the cause isn't yet known they cannot find a cure, merely help you manage the symptoms until it goes into remission. PMR does go into remission quite often - and as one of you said, the people you come across on these forums are the problem patients who don't work their way down the pred dose in 2 years with no flares or other panics. If that happens - they don't go search for answers. It is also primarily a disease of the "elderly", but by the time people are 80 one in two of them have PMR. It is mainly found in over-50s (sorry folks but in med-speak, that's elderly! Not old though - it's all relative) and the older patients probably simply accept it as part of getting older - "it's my rheumatics doctor", just as at least 2 members of my grandparents generation in my family almost certainly had PMR. But the incidence is definitely rising in younger patients although whether that means there are more of us or it is finally being recognised rather than being filed as "all in the mind" (in the sense of imagination) or as depression because of the depressive mood that is part and parcel of the syndrome (never mind being in constant pain making you depressed).

It has been found that a very extreme antiinflammatory diet can reduce the joint pain in half the patients with rheumatoid arthritis - and PMR is basically very similar to RA without the joint destruction and with the possibility of remission. It is different though - which is why the drugs used in RA usually don't work in PMR . Some patients who are initially diagnosed with PMR are later identified as having LORA (late onset RA) and these are possibly the ones who do do well on RA drugs. However - this extreme diet is basically vegan with a bit of fish. It means no meat or dairy products at all and is started with a 10-day sub-total fast - 200 calories a day. As soon as even tiny amounts of meat and dairy are reintroduced the pain returns, and as I say it only works in about half of patients. It is associated with a lot of other problems - not least sticking to it as it is so extreme and excludes so much - but also in terms of deficiencies, especially calcium. It takes a lot of green veg to give you what you need!

This is quite long enough for the moment - any other questions will be answered if you want ;-) Especially about the adrenals - it isn't really the adrenals not working well that is the cause of PMR. You need the pred as an anti-inflammatory and because you are taking pred the adrenals don't need to produce any, it isn't necessarily they CAN'T produce it. But that is a whole other lecture and a bit comlicated!

Just one other concern I have: Dinah, you have been properly checked out for diabetes haven't you? If yo u have lost a lot of weight and are peeing a lot that is a possibility and diabetes is an autoimmune disease (not the age-related version but Type 1 is becoming more common amongst older patients too). The bad news bit here is that once you have one autoimmune syndrome there is a higher likelihood of developing another.

Cheers for now,

Eileen

Thank you so much Eileen. I have read all your other posts on the north east forum, and they are EXACTLY the kind of information i have been looking for (while I really would love not to be a member of this club I am quite fascinated with the medical side of things!)

Yes, diabetes was the first thing my doctor checked for. I am a bit worried by some of my atypical symptoms (the excessive peeing - though that does seem to calm down on my good - ha! I mean not so bad - days; and also the fact that my shoulders are relatively unaffected, though I do have a stiff neck on the left side, and also stiffness/pain on my left inner elbow. I suspect it may be creeping up to my shoulder)

I do wonder about one thing, though, Eileen - and I bet you have an answer! The stiffness on getting out of bed or out of the car, is similar (though far worse) to what I had during the menopause, and I know lots of other women who have this not very generally recognised menopausal symptom. And that seemed to burn itself out after a year or two, just as other women had told me it would. The same goes, of course, for the night sweats. Is there a possible link - presumably somewhere in the endocrinal system? And given that HRT apparently deals with the joint stiffness, has anyone ever tried it for PMR?

"given that HRT apparently deals with the joint stiffness, has anyone ever tried it for PMR?"

I don't know - I only know that there is another thread here from someone who had her "PMR" symptoms dealt with by HRT and one lady has been on HRT for many years and despite having had GCA never had any PMR symptoms except when her vit D levels were VERY low. Lots of people do have GCA without PMR symptoms - it all depends where the cells have grown and which arteries they are partially blocking. But the vit D thing is also something you could consider - they should have checked your vit D levels as part of the differential diagnosis.

As I say - PMR is just a convenient name for the constellation of symptoms. There isn't one single identifiable cause - and the feedback system that tells your thyroid, pituitary and adrenals what they should be making - or don't need to make - also has some control on your sex hormones so I imagine that the menopausal syndrome could be related in some way. Some people with chronic fatigue syndrome do well when given thyroxine even though they have normal thyroid function tests. Nothing really does much for fibromyalgia. But I suspect they - and the others such as lupus etc - are all at different points along a continuum and only really have different names because the symptoms are a bit different - and the names were dreamt up for the severe presentations.

On the basis of my own experiences I also have this suspicion that the general stiffness is related to inflammation in the hips - which comes at differing levels like all of it. One of the early things I noticed was I couldn't sleep with my arms above my head as usual, you know, lying on my stomach cuddling the pillow. But it wasn't painful as such - it was the hips and feet that hurt when they joined in after merely feeling weak during step classes. The hip problems then lead to a strange walking action, then back problems and eventually to other muscle pain problems. It's a real case of needing holistic therapy!

I came back just now because I remembered someone (you) had asked about inflammation being left to itself. Yes, uncontrolled inflammation in the body puts you at risk of a lot of other very unpleasant ailments. Uncontrolled general inflammation is a risk factor in several types of cancer. One in six patients with PMR go on to develop GCA, the rate is higher amongst patients with undiagnosed (and therefore untreated) PMR. GCA is a very different animal though - no choice there, steroids or risk going blind like some 3,000 people per year in the UK at present who have unrecognised PMR/GCA symptoms until they lose vision. Many doctors believe there is an association between PMR and GCA - GCA is definitely a vasculitis (inflamed blood vessels) and some think PMR is just the early stages but it doesn't always progress. Many patients are thought only to have PMR but actually have some symptoms of GCA but because they don't have jaw pain, visual symptoms and headache that is ignored - but even headache only appears in about half of patients despite GPs (and specialists) apparently believing everyone with GCA has a headache. Whatever - vasculitis damages your arteries and you may go on to develop a range of other cardiovascular diseases including heart trouble, stroke, aneurysms or bad circulation in your legs which may, eventually, lead to gangrene and amputation. I have atrial fibrillation - almost certainly due to the autoimmune disease damaging the electrical cells that make the heart beat regularly.

In the past we haven't talked much about this rather alarming aspect of PMR/GCA because many people simply can't cope with so much bad news at once and panic. Especially since you tend to be left very much alone after the diagnosis and not offered counselling and support. However - some of us came to realise that isn't necessarily a good thing as too many tend to ignore quite serious symptoms thinking "it's only the pred", "it's my age" and so on - and the GPs are as bad! You can't blame pred and your age for everything - and even if it is from one or the other - the problem still needs to be treated! Atrial fibrillation can lead to stroke or a damaged heart/heart failure if not controlled. High blood sugars caused by steroid-induced diabetes still damage the blood vessels and lead to long term problems - whatever the cause, it needs to be monitored and treated if necessary and not by simply telling the patient they must stop taking pred. That's just silly.

Eileen

Right, I'm starting the steroids tomorrow!

Well done - I know it is a hard decision for many people - pred has such a bad reputation and some doctors can't see past that. But ibuprofen and paracetamol are fairly unpleasant drugs too for some people. One friend had a gastric bleed after just 3 days on ibuprofen for her pain and another was persuaded by her GP to try to drop her pred and use paracetamol instead "it's quite safe" resulting in raised liver enzymes, high enough to cause concern and an ultrasound scan although all was fine. Just because you can buy a drug without a prescription doesn't mean it can't have nasty side effects. And most of us found ordinary painkillers didn't touch the pain and does nothing at all for the stiffness.

There are some downsides to pred, not going to pretend there aren't, but some people get no side-effects and noone gets all 82 (or 83) of the listed ones. It should allow you to move and function decently. There are plenty of people around for you ask "is this OK or should I worry?"

tell how you get on!

Eileen

Dinah

I'm sure that's a wise decision, not least to reduce your pain levels but also to avoid the potential risk of more serious problems arising from the untreated inflammation in your body. And now that you've found us, there will always be someone around to answer any queries that crop up - between us we have vast experience....been there, done it and got the t-shirt! I do wish you a smooth journey to recovery.

Hi

I just dropped in and read this read and decided to post this website address although it is on the sticky at the beginning of Polymyalgia and GCA.

www.pmr-gca-northeast.orrg.uk. On that site is useful information and knowledge is power. It also contains checked out links. All the medical information is checked by professional medical people. Just like this site which has pukka information.

I repeat KNOWLEDGE IS POWER And people who have PMR & GCA need that power. Those of us that have been there, seen it, done it, learned from others and we try to pass it on.

By the way, I am the person who is referred to as being on HRT since I was 34, am now 74. No it does not cure, but it does help with the sweats that come with the use of pred, but then so does Extract of Sage and Primrose Oil. But as I don't know what other medication has been prescribed, before you take them you need to check them out with your Pharmacist for compatibility, not your GP, your Pharmacist, in fact you should check every OTC or new Prescription for compatibility, Pharmacists know more about drugs than GPs and there training is longer.

Good Luck in the journey none of us wanted to take.

Oops, spelling mistake - should be org, not orrg.

"And in fact for years I was worried by the fact that my body often seemed to be flooded with adrenalin - for no good reason (I couldn't even watch vaguely exciting films, let alone horror ones!)"

I've just spent ages looking for this quote Dinah because it bothers me! Can you describe the sensation you experienced? Do you still experience it?

Eileen

So we have the menapause to make you hot and sweaty, pmr to make you ache and pred which when I first took it left me a little hyper and also did the same on dropping from 20 to 15mg, then there is the stress of life

So tell me how on earth do you seperate symptoms from causes from meds from life in general?

I had an awful lot of investigations to get to the pmr diagnosis so I know what I havnt got at the moment but the future might change with all these associated auto immune issues. Together with trying to seperate what is pmr pain and what is pain associated with dose reduction I am getting seriously confused.

How do you work it all out?

Eileen, what i meant was that feeling you get when you're scared - it's probably me being silly, and I have just always been a scaredy cat. But strangely since I've had this illness - which I'm now praying IS pmr I don't get it so much, as if I've run out of adrenalin! Or maybe I've just prioritised and have learned not to stress about unimportant things...

BUT I have just been to see a different GP as mine is on holiday. I had to take in an early morning urine sample for the Bence Jones? protein test as the sample which came up negative before was taken later. This GP said the diagnosis of PMR didn't feel right to her as I would have pain and stiffness down the front of my thighs not the back. Clearly she's thinking multiple myeloma which I suppose won't be ruled out till we get the urine test results back.

She also said that steroids make you feel better what ever you have, and the fact that I am feeling less stiff is not proof that it is PMR. She says that I also have raised white blood cells which indicates an infection (or cancer I suppose)

I am now totally freaking out. I knew I had some atypical symptoms but the suddenness with which this whole thing came on - waking up one morning feeling like I had been hit by a train - seems so similar to everyone with PMR......

And also I would have thought that having the stiffness in my hip extensors and buttocks WAS indicative of PMR even if I don't have it in my shoulders too - though I do now have a stiffness in my elbow which is extending up to my shoulder gradually...

"How do you work it all out?"

You get the hang eventually - you get much more aware of what is happening to your body!

What we usually suggest for deciding between pmr pain/dose reduction pain is pain that starts quickly after a dose reduction and then improves over a couple of weeks is probably the reduction or steroid withdrawal sort of pain. On the other hand, if the pain starts up after a few days and then steadily gets worse over the next week or 10 days it's more likely to be the pmr raising its head again and you should probably think about going back to where you were last OK. So it is worth sticking at a reduction for a good 2 weeks even if you have got some pain as it may improve and you have succeeded in going down a bit. The other thing to do when trying a reduction is clear the decks - cancel everything unnecessary for at least a week and make sure you can rest as much as possible. If you know there is something that can't be cancelled or will be stressful (like Christmas or visitors) DON'T reduce that week. A week here or there isn't much in the great scheme of things if it improves the likelihood of success.

If you develop muscle pain - be honest with yourself: did you do more in the last few days? Lots of people make the mistake of thinking they feel great on the pred, are back to normal and try to do the spring cleaning, look after the toddler grandchildren ... For some people certain actions are a no-no - I can't do anything that involves wide sweeps of my arms, like cleaning window. Others are very sensitive to the weather and ache terribly when it is colder or damper. You have to learn to know when to stop for now. Including a rest every so often will allow you to do more overall - getting exhausted means you may not be able to do anything tomorrow, pacing yourself means you will achieve more over several days when you add it all up. And the fatigue aspect of autoimmune disease is a real problem - it will hit you without warning and make every motion feel as if you are walking in treacle with lead boots on. Then you really do need to say: "not today after all" because if you really fight against it you may end up in bed for a week. Unfortunately, because we don't look ill other people aren't very sympathetic or understanding.

To be honest - I had put sweaty attacks down to the menopause and other things to pred. In fact, I was probably having atrial fibrillation episodes! I ended up in hospital for a seized up sacroiliac joint and the treatment for that triggered a really long episode with a heart rate of up to 230 over 3 or 4 hours. Now that has been identified and treated - all the sweating and feeling hot most of the time has gone. I don't think it is coincidence. If you have something really wired - don't put it down to the pred - which is all too easy to do. Ask to have it properly checked out, don't accept dismissal.

But whatever you do - don't get too introspective and think about being ill all the time. That's the best way to be ill! Don't try to analyse every little change - it's pointless. Just be mindful - in every sense: be mindful of living to the best you can as well as noting what is "not right".

Eileen

Dinah - that doctor is wrong on several facts.

You can get pain down the back of your legs, quite a few of us have what we call "hip bum and thigh" pain (HBT for short!) . If you have pain that is more a symptom of GCA then the pain tends to be in the front of you thighs and starts when you are using them )walking, climbing stairs and so on) and if you stop, it stops until you start again. It is called claudication pain and is due to a shortage of oxygen in the muscle because the blood supply is poor. If the HBT pain is more on the outside and top of your thigh it is possibly trochanteric bursitis (bursitis is inflammation of the bursae and we are most familiar with it as housemaid's knee or tennis elbow) which is a later step of the hip stiffness. Bursitis in various joints (especially hips and shoulders) is typical of PMR.

This is a quote from one set of guidelines for diagnosing pmr: "A complete blood count (CBC) is performed; the white blood cell count (WBC) is usually elevated; a WBC differential will be done to determine types of white blood cells present ". The same guidelines mention bursitis and synovitis (in the joints) as typical.

As for pred making you feel better whatever you have - drivel! It doesn't even TOUCH the pain of fibromyalgia which can also appear very similar to PMR. The reason for using a dose of 15 to 20 mg pred to see how you react is that the speed of the response is very typical for PMR. It isn't 100% reliable but an improvement in the symptoms in hours is not unusual. The criterion is 70% improvement in symptoms within a short time. In rheumatoid arthritis it takes longer to have an effect - and anyway there should be other criteria to fulfil. Yes, the improvement with pred is not 100% accurate in terms of a diagnosi - but you did feel an awful lot better on it very quickly. If that makes a difference then it's fair to use it until they decide they have indisputable evidence of something else.

If you go to the website MrsK quoted or go to it from the pinned section at the top of the list of threads - the PMR and GCA northeast support group site - you will find a link to medical information - including the British Association for Rheumatologists guidelines for the diagnosis and treatment of PMR and GCA which you can download or print off. It lists the criteria for a presumptive diagnosis of PMR.

PMR will start somewhere and then it spreads - just because you don't have noticeable stiffness anywhere else yet doesn't mean it isn't PMR. Weight loss is also typical - how much and how fast was it? I'm sure the doctor is seeing that ahead of anything else - which is understandable if the other doctor hadn't included that in the differential diagnosis. And by the way - not only multiple myeloma has Bence Jones protein in the urine. So do several autoimmune diseases including rheumatoid arthritis and lupus.

Don't panic yet :-)

Eileen