Foods to help inflammation of PMR

Of course many of us are on doses above 5mg - until the underlying autoimmune disease goes into remission you need the dose that will control the symptoms as that is all that is available. There is no cure - much as with diabetes although diabetes doesn't ever go into remission of course. For many people that is initially somewhere in the region of 9 or 10mg - it doesn't mean you won't get lower at a later stage. One of the links on the post on here I gave you a link to a paper by the Bristol rheumatology department

"Our approach to the diagnosis and treatment of polymyalgia rheumatica and giant cell (temporal) arteritis" by V Quick and JR Kirwan

They reduce patients from 15mg to 10mg in two steps, with 6 weeks at 15 and 6 weeks at 12.5. Then they leave the dose at 10mg for a year before trying any further reduction.

The most common cause of a flare is reducing too fast or to too low a dose to control the symptoms - it isn't usually the case that the disease goes away in the meantime and then gets worse again, it is there but under control, like a forest fire that is covered with foam or sand - break the covering surface and it will break out again. Our sand is pred.

The other thing your GP (and you) must bear in mind is that "management" of PMR depends not only on the pred but also on lifestyle. In the case that you must work in some way you will almost certainly need a higher dose. You can often get away with a lower dose if you turn into a "precious princess" to quote one of the ladies on the other forum - she fought against the PMR, forcing herself to do all the things she had done before, and it got worse not better. last summer she decided to try being a lady of leisure leaving housework and everything that aggravated the PMR to her partner. Like me, she is down to 5mg as a result of that and the tiny, snail's pace reductions. We both say - we feel different, can't explain it but it has worked.

You have to remember that now YOU are a "disabled" "sick" person - heavy lifting and standing for long are poison to someone with PMR. The muscles take much longer to recover from any exertion - and react in the first place to much lower levels of work as if you had just run a marathon.

As long as the underlying cause of the PMR is active you will need pred and almost certainly at above 5mg. I had PMR for 5 years without pred - it was mild although I never had a day without pain. But there is no way I could have cared for 4 dependents and done normal life things even then. For the last 5 years I have had to abandon much of my own normal life things - I do the ones I can manage comfortably and the rest either has to be left or someone paid to do it. It is improving rapidly - but housework is still a struggle.

Nefret may be able to help too - she is also diabetic and requires life-long pred because her adrenals no longer work. Pred and diabetes can mix with care.

Beware the supplements - never take anything before you have discussed it with the pharmacist at the local chemist as even "natural" substances can interact dangerously with other medications. And beware the claims made about the supplements - whether in the ads or even here. There is no proof ANYWHERE that any of them help PMR - and I suspect an expensive supplement you have been persuaded to purchase may have an excellent placebo effect! Not that that is always a bad thing - but it maybe only really benefits the person who is selling them!

Eileen

Thank you very much Eileen. You have provided me with much to read about. Much to think about and much to talk about with my GP. I realise that I have been a) ignoring it as much as possible until b) I can ignore it no longer. Hiding my head in the sand 'til I hit a rock!

Just in case anyone needs some diabetes/pmr/steroids information please do ask if you have a specific question. I've been diabetic for almost as long as I've been taking steroids, or perhaps it was the other way round! When I was diagnosed with T2 diabetes the advice was very much concentrated on a carb-based diet - which made no sense to me at all - always found I controlled diabetes more easily if I focused on lower carbs and didn't worry too much about sugar. I'm not saying that we all need fresh cream vanilla slices every day (yes, please) but I gather now that the latest 'fad' for diabetes is just that - low carb, which makes them about 15 years behind me.

I did put on 3st in weight to begin with once on steroids but it certainly wasn't what I was eating which was causing the problem. I think now that that early weight gain was partly due to steroids re-distributing body fat plus water retention and enforced inactivity, this last being a major player for me. The gents with PMR don't seem to have fat-distribution problems which might be why they mostly have a much easier journey.

However, I am currently on 5mg steroid daily and have been for two years and my sugars have been in the normal range for a bit longer than that and of course I hope it stays that way, but I only 'hope' I don't 'expect' because if I have learned one thing it is that you can never take PMR or anything associated with it, for granted.

I

I neglected to state that I am male. I had just celebrated my 69 birthday the morning before I was first laid low with PMR. (In retrospect, I may have indulged in a wee bit to much of JD and branch water). I have been toying with the idea of independently dropping my dose of steroids but the discussions on this forum has helped change my mind. My rheumatologist has me reducing the dosage in 5 mg steps, every three weeks until next week when "we make a change" in the reduction regimen. Next week, I will be at 20mg, yeehaw, which is Coloradan for thank goodness.

Why am I posting on this site instead of a US website you might ask? It turns out that this was the most informative site I found. My rheumatologist, late of Mayo Clinic, states that PMR-GCA appears to be a genetic disease which affects people with North Sea heritage. My maternal relatives who settled Middle Town, CT were from Scotland. DNA testing of the 13 identifiable locations and migration paths for human male confirm North Sea heritage. Curse those Vikings who "partied" through the old world ;~D

Yup - the Scandinavian genes seem to have a fair bit to be blamed for! Mind you - some of the most active research groups are in Spain and Italy , places we don't normally associate with marauding Vikings though no doubt they got there.

There are 3 forums here in the UK - all with strong medical or research associations so there isn't too much wibble (it gets weeded out or pounced on!). This particular forum is the one that got the others started really as some ladies "met" here and started working towards a charity to speak up for PMR and GCA patients. This site was started by doctors and is carefully moderated (as are the others) and if you use the search function here you can find pages directed at medics too which are very useful.

But none of us are racially prejudiced - if you have PMR or GCA and can contribute to the discussion: Welcome!

I have to say that all the info from EileenH is invaluable, I am pleased to say that I went back to the docs this morning with an unrelated illness (chest infection) and saw a different doctor. She read my notes and was straight on the case of my steroid dosage for my PMR which she said was incorrect, as Eileen had previously suggested. I had been given 20mg for 3 days to come down to 15 for 3 days etc. This doctor today said No. No. No. She put me back on 15mg and she will assess me again in two weeks time. She said that I had been coming down far too fast. PMR will not respond to quick fix and no wonder I was aching again. The original doctor retired the day after giving me the original dose. She also said he should have given me information about it. She printed one off and guess where it came from? This site!

Thank goodness I am now with a doctor who understands. Thanks to everyone on here who gives valuable advice. To those of you who are new. I ask you to heed it.

Oh thank goodness for some good news! I've had 2 today that I can't believe!

One lady was told by a rheumy she doesn't have PMR (he claimed he couldn't find the results from another specialist on the computer) and now she is on pred (which she should never have been given according to him) she will be hooked for life. Eh????? Not in our experience - or there are a lot of liars around!

The other young man has been told categorically GCA doesn't ever happen in young people so he can't have it despite several very suspicious symptoms - it took me 2 mins to find a paper about a 17 year old with biopsy proven GCA with a load of references to others. No, it isn't usual, it's VERY unusual - but it isn't impossible.

To anyone - if you are told you have PMR but the pain comes back quickly with the treatment you are given - ask to see another doctor. Especially, I have to say with great reluctance, if the doctor is my generation and heading for retirement.

And Elaine - stick with the lady! She sounds wonderful!

Eileen

Glad you are pleased Eileen. I am following these forums and I see you struggle to convince people, so I just had to tell you and share with the others who visit, what happened to me today.

Also I do a fairly physical job and this doctor has signed me off for 3 weeks to help me get on the right track.

I have never had a sick note in my life (I am 60!).

I feel very positive that I am now on the right path.

I find all this information so helpful. I am currently trying to

Get my polymyalgia under control. I have been put on

20 mg already tried after being on for a few weeks to reduce

To. 17,5 mg but my pain was not having any of it. Thankyou to

Eileen for explaining so much and to everyone else who have suggested probably

Too much to quick. I was put back up to 20mg as in too much pain which is mainly in neck and shoulders. Getting less headaches.

I have been struggling for the last two weeks whilst waiting for the appointment

To see the Rheumatologist. I can't cope with this pain , it is almost disabling at times. My arms are

So tender so l discovered when my fog slammed his Paw on my forearm. My neck and shoulders are hurting all the time, it seems to improve mid afternoon but then get worse again by early evening. If l come home and walk the dogs I regret it as l am in quite a lot of pain when l get back and totally exhausted. My tiredness levels are better than they were but cant plan to go out in the evenings as l know it is to much for me.

I am going to call the GP tomorrow as l feel my steroids need to go higher still which worries me.

Does any of this sound familiar to any one.

Thanks for reading this and commenting

No - if 20mg is not making a significant difference the diagnosis of simple PMR may well be incorrect.

There are other things that are very similar to PMR but which don't respond to 20mg pred - and that should be enough, 15mg is enough for most. There really should be a noticeable improvement within 24-48 hours of starting 15-20mg/day.

Have you had your vit D level checked - if that is low it can cause similar pain. Late onset rheumatoid arthritis can be similar too and does not have to have a positive rheumatoid factor test.

You say you have headaches - are they anything like what you would have if it were GCA?

However - maybe you are just still trying to do too much - REST!!!! Give your body a chance.

Eileen

Thankyou Eileen. Headaches are very central across top if the eyes. I did feel initial improvement very quickly

But then bad again within a week.

Your advice of rest may well be the key as l am still trying

Very hard to continue with normal life and resting

Has not come into that

Thankyou for your advice

Did you start to try to get everything done as normal as soon as you felt better? That is NOT a good idea ;-)

The pred allows you to manage the PMR - but you have to do your bit and manage your lifestyle too. You have a chronic illness - it is not life-threatening but it is life-changing for as long as it is active.

You WILL get better - but only if you do your bit.

Eileen

where do you ge magnesium malate please