medical evidence for anti-inflammatory diet/no steroids?

Dinah, it isn't given to all of us to have the choice. Had I been weighing up the evidence some 11 years ago, it would have been a choice between literally putting my life on hold and taking to my bed in agonising pain for however long it took OR managing to live a reasonable facsmile of 'normal' life.

I couldn't have taken the first option financially, would not have taken it physically (rampaging inflammation can do far more harm than the steroids apart from the very damaging effects of being totally immobile) and I doubt very much if I could have survived it mentally.

However, mine was a severe case; if you have a milder case then there is no reason not to try it steroid free provided you are aware of the pitfalls i.e the damage that unchecked inflammation can achieve when it wants to, plus you are taking a greater risk of it developing into GCA. If that happens and your sight is compromised, then currently there is no alternative to steroid treatment. Also you are putting your adrenal function under a lot of pressure. For day to day living probably OK, but it doesn't leave much for the sudden 'fight or flight' function.

Most of us - and I'm sure there will be others along later - follow some form of anti-inflammatory diet anyway to give a helping hand, but as far as I am aware in order to beat it completely it takes a very restricted diet and a lot of time and expense dealing with it - not to mention willpower.

So, going back to the first paragraph, I opted for steroids and I am here now still on steroids (albeit a maintenance dose) and while life over the last decade has not been a bed of roses, no-one has assured me that life without steroids or PMR could have been any easier. I was 57 when first diagnosed and the retirement plans we first opted for have gone by the board, but (and it's a big BUT) I have done more extraordinary and unusual things than I ever dreamed of in that time.

I hope this helps because the decision is yours alone. You know your own circumstances better than anyone else. Whichever way you decide to go, please come back and tell us. We will give as much support as we can.

Catie

Thank you Catie. I do appreciate that - for the moment at least - my case may not be as severe as most, but also fully understand that it could get a lot worse...

But when you say inflammation can cause damage - what exactly do you mean? And in milder cases (my ESR rate was about 44) will Ibuprofen not at least dampen down the inflammation?

I think what I find most depressing about the steroids is that, though everyone says it burns out in 2 or 3 years (my GP also mentioned a mythical 6 month figure!) everybody on these forums seems to have had it for much, much longer. (But then I guess people who are feeling fine and dandy are just getting on with their lives, not haunting the internet like I've been doing these past three months!)

Also one of the things I've noticed is that a lot of people mention prolonged periods of stress prior to getting PMR. This is certainly true in my case. 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 didn't think it could be doing me any good and I wonder if PMR is the result. And if that is the case, then shouldn't we be seeing endocrinologists as well as rheumatologists?

Sorry, I should probably be putting some of these questions in different threads. I'm very much a newbie, but have already found the forum a great comfort.

Dinah

As Catie has already said, "it isn't given to all of us to make the choice" and it certainly wasn't given to me. I spent many months undiagnosed and bedbound and in excruciating pain during my first year of illness with Ibuprofen or Paracetamol giving me very little, if any, relief.

My journeys to and from hospital during that first year were by ambulance and wheelchair but unfortunately my rheumatologist at the time failed to diagnose me.

I spontaneously and gradually recovered towards the end of that year, but within a couple of months was hit by returning pain and some other severe symptoms. This time I was referred to a different hospital and both PMR and GCA were diagnosed and I was prescribed a 40mg starting dose of steroids. The relief in all the symptoms was almost instantaneous.

I learned that people suffering from untreated PMR have a greater risk of succumbing to the linked condition, GCA and I was one of the unlucky ones. However, untreated inflammation running around in our bodies can lead to even more serious illnesses, including heart problems.

A rigid anti inflammatory diet might work for some people who have a mild form of the disease. I tried to eat as many organic and anti inflammatory foods as I could whilst on steroids - they may have helped but they didn't cure me.

Yes, a lot of people mention suffering a stressful time before succumbing to PMR, but there are also people who blame statins and others who blame it on a prior attack of flu. There is no known cause or cure at present but there is a lot of research taking place though generally among rheumatologists rather than endocrinologists, as far as I am aware.

I do wish you well and hope whichever path you take proves to be the right one for you. Good luck and do let us know how you get on.

very few people when first diagnosed feel if they can cope without steroids they will but very few manage , view steroids as your friend not enemy its controlling not curing this condition ,if you were a diabetic would you refuse insulin the anti inflammatory have just as many side effects as steroids including heart probs,the sterioids do the job of the adrenals until such time they can once again cope later in the condition .i am sure eileen will explain all this in length but at the end of the day you have to decide yourself the road to go however you need to be consistant stopping and starting meds will only cause more problems and put you at risk goodluck keep in touch carolk

Thank you Carol and MrsO. I am being careful to take just one max strength Ibuprofen and am alert for any stomach problems, as well as the dreaded GCA. In fact I am coming round gradually to the idea of steroids - I'm a journalist and hobbling around like an 80 year old - morphing in to John Wayne later in the day - is not a good look for me! Plus the constant pain/stiffness, even if quite low level, is just very tiring - the thought of Chrstmas fills me with horror!

But I do just want to understand everything before I go ahead. The whole physiology of the disease - everything! I know we can't name specific consultants but I would like to know where the best research is going on. Is it UCL?

I have only just moved to Devon - just after I'd had blood tests done in London - and my new GP diagnosed PMR immediately. However, I suspect he is going to want to treat me in primary care whereas I am very keen to see a specialist - I still have a base in London so would be happy to be referred to a hospital there. I was a little concerned that my GP told me to "play around" with the steroid dosage while he was on holiday for 2 weeks, suggesting I try 5mg instead of the 15mg I had been on for the five day trial period. I realise that he was probably trying to accommodate my anxieties about steroids, and that as I had only been on them for 5 days there was probably no danger of withdrawal - but still, one thing I have learned from my internet wanderings is that you don't "play around" with steroids!

Dinah, you made me laugh there! I have a very good John Wayne impression which I keep for bad days, although my husband likens me more to a 'robotic gorilla'.

"But I do just want to understand everything before I go ahead. The whole physiology of the disease - everything! I know we can't name specific consultants but I would like to know where the best research is going on. Is it UCL?"

The problem with that is that there is not a lot yet known in the way of concrete facts. PMR, like almost any other automimmune disease, is subjective - and so is one's reaction to steroids. If you want credible information, try Johns Hopkins or the Mayo Clinic (US) but there is a great deal being done in this country right now.

If you take a look at the sites on the 'Pinned' threads at the top of this forum, they give details of sites here in which you will get the optimum correct information plus another forum or two which are strictly for PMR/GCA patients. On the PMR/GCA North East support group's forum you will get the nitty gritty from those who have been there and worn out the T shirt, plus a lot of light-hearted banter and some laughs along the way (something everybody needs).

You are quite correct about the steroids too - you definitely don't 'play around' with them. You need to go in boots and all and consider them to be temporary 'friends' rather than enemies. 'Tis hard, sometimes, but there is light at the end of the tunnel, it's just no-one knows what the length of their own tunnel will be!

Catie

Dinah

Look up the BSR Guidelines for the Management of PMR - lots of up-to-date information there. Also, our National Organisation, PMRGCAuk, where you will find loads of other information including details of a support group in the South West of England which might be of interest to you. You will also be able to locate the areas of research.

Hope that helps.

hi i come from devon the rd& e exeter has a rheumatology dept but so do others in the s/w . if you read the info on the other forum you will realise that your gps advice is not always appropiate for steroid use, the starting dose is at least 15mg then when and only when the symptoms are under control ,you start to reduce slowly in conjunction with regular blood tests to monitor inflamation markers however for some people these do not always coincide with how you are feeling so go by how you feel re symptoms ,i am afraid gps attitudes vary according to their take on steroids so you have to get informed and stand you ground if you feel their advice is not sound . keep posting and we will guide you through this rather mush that is pmr .carolk

Dinah

Dorothy Byrne Journalist has written articles in the Daily Mail on both PMR & GCA. Dorothy is also a member of PMR & GCA UK National Organisation.

There is a sticky at the beginning which will take you to a website which will give you a lot of information on both PMR & GCA.

One thing, there is no cause or cure at present, but knowledge is power.

Hi all

although I don't join the discussions, I do try to see how other people are coping with this condition. I have been to hell and back in the last 16 mths. Last christmas was my worst ever when the pain was so bad I could not get out of bed. My mum suffers from Dementia and because I was helping my sisters look after her it gave me the strength to carry on. In October I saw my reumy again and he prescribed Arcoxia which is an anti inflammatory, and I can say it is doing the trick. I can't believe I am actually getting up in the mornings with minimum pain. At the same time I am trying to lower the steroids and the moment I am taking 5/4 on alternative days so hopefully will be able to do so. I'd like to know if anyone else has taken this anti inflammatory and if so have they helped?

Lupe

Lupe

Arcoxia is a NSAID and is used in

Ankylosing spondylitis

Gouty arthritis

Osteoarthritis

Pain

Rheumatoid arthritis

Spondylitis

I do not know anyone who has used this NSAID,

When I was taking Pred ( I am now in remission) I was told no NSAIDs at all. But I do know some GPs do occasionally prescribe them. Please be careful as the mix of pred and NSAIDs is not clever.

Someone else will be along and they may know more.

Hello

I was recently diagnosed with pmr by exclusion as "too young and no markers" but pred worked a treat and i felt like i dropped 30 years in a few days. Then of course over did things and pulled a back muscle. This was a salutory lesson to slow down and take more care of myself. My rheumy was worried about pred and my weight but i am determined to do my best to be able to stay feeling this good or at least not as bad as i was a slug would be the best description of what pmr had turned me into.

So have been researching antiinflammatory diets which range from the truly hard core to the best healthy eating variety. What i have read makes sense in terms of how poor eating choices (for me wheat and sugar but so much easier to eat when you are so tired) combined with a stressful life and too many needy people can combine to turn up the inflammation in your body.

So for five weeks now i have been getting in to AI diet slowly at first changing one meal at a time breakfast one week adding in lunch the next etc. i guess I am looking at it as a way to stay well not a weight loss plan but losing weight is a definite bonus. I feel I am putting goodness in my body to help fight this illness and that makes me feel like i am doing something about this illness. Whether it really affects the inflammatory nature of pmr is anybodys guess i mean how can you separate the effect of the pred and that of the diet? I know that for me the diet alone would not be enough i need the meds at the moment.

I guess subconsciously i hope that the diet might ease the reduction process but as everyone is different and so many factors are involved who knows.

I also take supplements such as fish oils and coenzymeQ10 along with the calcium and vit d .

As i say early days but i do feel good on it. Green tea is a great help and my friends cannot believe i have given up my builders cuppa. It hasnt felt like hard work where normal diets are all about what you cant eat the AI diet is about what great stuff can i eat next to help protect my body?!

One final word in all my internet research about pmr there is so much demonising of pred as the devil I found it really depressing. Is it just that I am new to this but so far pred has changed my life I know there are many risks attached and dose reduction is problematic but is it really the devil incarnate in some little white pills?

Angiebabie

Yes Pred can be our worst enemy and our best friend, but one thing is for sure........without it, I would be bedbound and could have lost my eyesight.

I agree totally with pursuing as anti inflammatory a diet as possible, including many fresh veggies and fruit, and organic if affordable. It won't cure PMR but I believe from my experience that it can, alongside the Pred, help to reduce the inflammation and with it the pain. Plus, the biggest factor for me was that I felt at first that I had lost all control over my life and paying special attention to my diet gave me back some control.

With regard to the "fish oils", I prefer to eat two or three portions of oily fish a week, and I quote below parts from a recent article written by a Professor of nutrition and dietetics in London:

"I would always recommend eating fish twice a week instead and would leave off the pills altogether. Here's why: when you eat fish, you are eating a cocktail of nutrients such as zinc, which is involved with wound healing and cell division, and vitamin B12, which is essential for blood cell production, as well as the omega-3 fatty acids."

"Many adults who take fish-oil supplements do so because they've read that it eases aches and pains. While there is an element of truth in this, you need to take a lot to get any benefit. For example, consuming 3g or more of fish-oil omega fatty acids every day moderately reduces pain and inflammation in rheumatoid arthritis (it won't help osteoarthritis, which is not an auto-immune disease). That's about 15 times as much as you will find in a typical fish-oil capsule. You can have up to 5g of omega-3 fatty acids every day, so taking those pills won't harm you. But fish oil does contain calories and do you really want to work your way through 15 capsules every day for just a modest benefit?"

"The National Institute for Health and Clinical Excellence supports eating fish, but does not recommend fish-oil supplements. Why? One reason is because fish-oil pills do not lower 'bad' LDL cholesterol, and in some people actually raise it."

Good luck with your PMR journey.....and with your diet!

Hi mrs O

How exciting you are officially my first reply so nice to know someone is listening!

Thanks for the fish oil info i had read something similar recentlly it seems to be a hot topic in the press at the moment. I am eating fish as well and the oils are a particuarly pure form to help support me mentally through the stress of it all - fortunately there is good medical evidence for this. See the mindi1st website for more info.

There is a lot of talk these days about empowerment and I do so agree with you about wanting to gain a feeling of some control over pmr and for me the diet aspect is something I can do.The other being trying to prioritize my health needs over the demands of a busy family life like most mums I tend to answer the needs of others then get around to mine My lads are adults now and very sweet but who wouldnt want to have a helper constantly on tap if you could. But thats back to my theory that all a woman really needs is a 'personal assistant'

Is there anything you have found particularly helpful?

Thanks for taking the time to answer

Angiebabe

Thanks for your input which I found very reassuring. I am on the verge of taking steroids as I am just not finding it practical to carry on normal day to day life with the pain and stiffness. I have been managing ok with regular Ibuprofen - particularly when i was being very careful to avoid inflammatory foods so I really do believe that an AI diet must help.

In fact, even before i knew i had PMR a couple of months ago i found i was craving certain foods like liqorice, ginger and beetroot - all good anti-inflammatory stuff. Because i had lost so much weight - sadly too scared to feel triumphant at fitting in to my daughter's jeans - I was trying to force myself to eat cakes and biscuits which conversely were the very things i actively disliked. VERY unusual for me!

So although I am generally very sceptical about unproven dietary/ alternative treatments that dont have any scintifi