What comes AFTER PMR?

Hi, I've just read through this topic to see if anyone asked more about the foods that you find contribute to flares. I am very interested in these as I remember my Dad used to say "you are what you eat."

The most common cause of a flare is reducing the pred dose too far or too fast - and many flares are not "flares" but steroid withdrawal pain because the body is objecting to the dose being reduced in too large steps. Either way, the response is to go back to the previous dose, it deals with both problems but doesn't tell you which it was.

Many of us have tried omitting various foods that are often blamed for contributing to inflammation - and for most of us it didn't make any difference, we just missed foods we liked and which varied our diet! Some people have found they feel better on a gluten-free diet although I don't know whether they went properly gluten-free or whether they just left out bread and cakes. Wheat (in particular) gets into EVERYTHING for some reason and I do find I feel better when I don't eat wheat (I develop a nasty rash as well if I repeatedly eat it so I rarely do but occasionally something is worth itching for ;-)  ) but it isn't the PMR as such that changes and it isn't the gluten as I eat other gluten-containing grains with no problem.

Research (a proper controlled study) did find that in rheumatoid arthritis a very strictly vegan diet led to an improvement in joint pain in half of patients. As soon as even small amounts of dairy were reintroduced the joint pain returned. It was such a restrictive diet that people found it very difficult to stick to long term but I do know of people who have claimed they have "cured" their PMR with such a diet. I prefer the word managed - and the other question is was it PMR or was it incorrectly diagnosed and was it really RA (not uncommon). 

Hi David, I have had RA for a number of years and could manage it with Plaquenil.  Just 3 months ago I was diagnosed with PMR which I find very painful.  I do watch what I eat....I avoid beef....otherwise chicken and salmon.  NO nightshade vegetables like potatoes, tomatoes, eggplant which can cause RA flares and probably PMR, too.

Otherwise I eat all other vegetables which I love.  Sprouted wheat bread I can tolerate, peanut butter etc.  I do drink coffee.....which is probably not the best.....very little milk.  Cottage Cheese is okay rather than fermented products like yogurt.  I avoid eggs.  NO BEER.....very little red wine now and then. Natural Ice Cream  (Breyer's here in the US) is good and agreeable.

Organic and natural foods are important to me.  All the best to you.

Erika

But erika - do those restrictions actually make any difference to the RA and/or PMR that you can feel? None of them made any difference to me. I don't drink coffee often anyway but I have tried everything else with no benefit I could establish.Until cutting carbs - now I am losing weight and feel much better. I eat beef, I snack on cherry tomatoes.I don't drink beer - yuk! I don't eat cottage cheese - just proper cheese, the harder/stronger the better, eggs I love but have got out of the habit after the lies they used to tell 15 years ago.Still trying to regain the habit - cheese omelette anyone?

Hi erika59785,

thanks fir fir coming back to me and that list and guidance do was very useful . . .It does contain lots of stuff I like but it's worth a try.

Thanks again,

David

I am on my second day of NO CARBS. Really feeling the difference now. Can already  use the next notch on my belt. I wonder if its the carbs which are/were responsible for my Diabetes 2.I was very heartened by the news that the body does not have to have CARBS, Although I am going to miss them,I know.  So far I am consuming larger quantities of onion and cabbage soup,laced with melted cheddar. Scruptious!!

I also eat tomatoes,celery lettuce,mushrooms,sprouts and cauliflower and brocolli. Chicken and pork also on my reinvented menu. If it isnt Carbs and you like it--- go for it.

O,and I have cut out booze( even wine) for now although I may have the odd glass of the red stuff.

Thanks Eileen for the tip.

To tell you the truth.....I don't know.  My RA doctor told me not to eat beef and drink cherry juice which is supposed to be anti-inflammatory.  I have always had some kind of food allergies.....eggs and milk do not agree with me, but maybe the nightshade vegetables might be just fine.

It is restricting in a way to avoid some of the foods.  I must a admit....I do like pastries and good German bread I can buy here......maybe THESE are the culprit. ?? :-)

 

There are small amounts of carb in almost all vegetables - quite enough to keep the body happy. In the old days before they had worked out how to isolate and use insulin from animals the only chance for life for someone who became diabetic was to stop eating carbs - and some had fairly long lives by doing that. The concept of using diet to reduce the amount of medication required has been lost and I think the dietary advice handed out over the last 30-odd years has compounded the problem, I remember being "interviewed" by a dietician as I needed to lose weight: "You need carbs at every meal, 6 slices of bread a day..." If I ate 6 slices of bread a day I couldn't eat anything else - and I'd be twice the size I am!

In my opinion - yes! As I've said, I get horrendous eczema if I eat wheat products on a continuous basis, the occasional small portion is OK. But I love German pure rye bread - but I do notice even when I eat just one decent slice a day as well as veggies I don't lose weight, eat more than that and I put on weight. 

My GP is anti meat of any sort for rheumaoid patients but I cannot cope with a totally vegetarian diet much as I love veggie food. The dietician was rather less strict. I cut back on meat but it is difficult to get good oily fish here - all salmon is farmed which isn't as good. But the compromise I've come to seems to work fairly well - and it includes nightshades except potatoes and red meat. 

It's experimentation all the way to find the optimum for you yourself. But more than a small amount of carbs will not help the weight problem when you are on pred.

Eileen, one more question....

Yesterday my GP recommended taking one Baby Aspirin daily which I had not done before.  He said everyone at my age ( I am 74) should take one.  Do you think this is good advice for everyone?  I was glad that he agreed with the 5 more weeks on 15 mg Prednisone, and then start with a taper.  I will try the ONE mg for month after that, like OregonJohn mentioned --- I do not want to risk a flare.

Thank you so much for your input.

Erika

It is used as a prophylactic in cardiovascular disease - it is thought to reduce the risk of stroke or heart attack. It has been suggested that all patients with GCA should take it of whatever age. Providing you don't have any gastric problems or allergies to aspirin I don't think there is any reason why not. Some people think it is a magic drug - I don't really know all the pros and cons but I doubt it will do much harm.

Eileen, thank you --- I value your opinion.  I do tend to have heart palpitations and sometimes irregular heartbeat which was noted by my GP,  but so far not shown in an EKG.  I also had a heart monitor where nothing of concern was shown either.  So...I would think a baby aspirin would be worthwhile.... especially if it would help patients with GCA/PMR.  I will take it with a lot of food because aspirin tends to bother my stomach. 

Again thanks for your input.

Erika

First ket me say what a comfort this thread is to all who are lucky enough to have bumped into it. My GP said PMR was very rare---1 in 2000 !! Not sure about that.

What is becoming of interest to me is that Pred is great for getting us back on our feet,but a bit of a nuisance when we try to get off it. I rushed it a bit, and paid the price of having to go back to  fairly high dose and then coming doen very slowly.Tomorrow I am going to try 4.5 mg and see if I can get away with it. I will cover with Paracetamol as I am expecting some discomfort.Then in a few weeks time I wull drop to 4mg and so on.

What I also find interesting is the number of us,and presumably others who suffer from PMR,who had previously suffered from another Autoimmune malfunction. MIne were Diabetes and Sick Sinus Syndrome.( slow heartbeat)  Prior to those conditions I was going through a  very stressful episode.Not a normal bump in life's road,but a very severe issue..My cousin is a noted American Psychiatrist, and he maintains that Schizophtenia is triggered by an enormously stressful event.Or at least is perceived as such.

Is stress the GREAT ENEMY which is responsible for many many conditions??

Sorry to wander a bit.I wonder how many on here feel you may share this view from your own experience?

I consider stress to be the major problem causing PMR and/or flares.  How can one avoid life's surprises if they are painful emotionally?  I don't think PMR is common --- most people do not know what it is?  I did not know until 4 months ago.  I had to explain to my friends why I could not walk fast a couple of weeks ago.  Luckily the 15 mg of Prednisone calmed down the inflammation, and I am thankful that I can enjoy a longer walk without pain.  Now I have to be VERY careful to taper down 1 mg a month after I have been on 15 mg for 6 weeks altogether.  One has to treat this great medication with respect.

All the best to you.

 

Strange to see that written down . . . STRESS . . . . My mother got shingles and always says it was stress that did it. So all my later adult life I've watched 'the stress' with a careful eye but it did get me for two years before PMR appeared. I've often mused what bought it on and never found a reason. I did not catch that's for sure. Often thought it was a continuation if playing tennis too hard, too many times a week! 😀

but it ill tell you what! I could relate to stress playing a majopr part and nit over as most of the glitches, flares whatever always coincide with yet another stress related incident. No wonder we read in the Bibke that Jesus said "peace be with you" . . . . Could do with lots of that!

I still believe stress was the root cause of the start of my PMR.  I am a Chair of Governors at an Academy that last November was placed by Ofsted in 'Special Measures' (the lowest category) after many years at good with outstanding features.  This was mainly due to the Year 11 cohort being either middle or low ability which resulted in them only obtaining 31% with A* - C in their GCSE's.  The DfE came down on us like a ton of bricks and in May this year so much pressure was put on me as Chair to 'sack' the Headteacher with threats about my capacity to govern the Academy that I had to ask the Head to take 'Gardening Leave' and appoint another Head.  The new Head started very well and the pressure was taken off me but shortly after I had the classic symptoms associated with PMR and was 'treated' with preds very quickly.   For US readers Chair of Governors = Chairman of School Board, Year 11 =  Grade 10, GCSE = SATII.  Stress is a major problem in todays hetic lifestyle.

I read with interest your experience with STRESS which can cause the onset of PMR and/or make flares worse.  I did not know what hit me, after my move last year from my house into a Townhouse closer to my family.

It was HORRIBLE dealing with certain issues which were totally unexpected.  The Germans put PMR under the category BURN OUT!

There is truth to it! 

Wish you NO flares and PEACE!

Just to say the stress was very much reduced after the results of this years cohort being 54% and next years hopefully 58% (close to the national average)  I am retiring as Chair in December and putting my feet up and letting someone else take the stress - I've had enough this year!  It gets harder as I get older.  I also might add my wife is 50 and I have a 16 year old son!!  Was widowed twice - 1985 and 1996 and have a son from my first wife aged 48, if thats not stressful I don't know what is!

I feel for you! You have been through a lot.  I did not know about RA until after my husband died suddenly 17 years ago.  I was diagnosed with RA 1 year later and I could manage it with Plaquenil....until the dreaded PMR hit me with much more pain.  I realize it is connected with the auto-immune problem of RA, and it might be genetic.  I hope, my 2 children will not have to deal with it because of my Northern European descent.

I have never heard any Dr in Germany say PMR is similar to "burn out".  They are two totally different things.

It's interesting to hear all the comments on stress.  Personally I don't suffer from it - never have - but my PMR is VERY active!  

Hello John,

I can plug into your experience very closely.I had a very similar experience,It is so painful even now,that I do not even want to think about it,let alone talk about it.

Sometimes I wonder whether it is alwaysa good idea to take on responsibility in the cut throat enviroment we are forced to work in today.

You are finding that just talking about your story is helping you find 'peace'. I just let my tale run around in my head without escaping.Maybe that;'s part of the problem. The school I was associated with produced the best results in the area for many years.Then,for reasons identical to yours,we had a 'bad' year. The roof fell in and I was the scapegoat.So,from hero to villain in ONE year. I have never fully recovered although this occurred 20 years ago and I had never considered myself to be a ';weak' person.  WEIRD !!  The subconcious is a very powerful and very real element in the way our lives pan out.

I find all your stories comforting.I am far from alone it seems!!

You do seem to be the exception judging from the contributors on this thread.Sometimes an event can occur which you seem to have taken in your stride, but your subconcious is not handling it well at all. My Psychiatrist cousin is always banging on about how our subconcious  rules our lives!!

It probably IS 1 in 2000 OVERALL. But it is defined (not entirely accurately) as being a disease of the over-50s. If you take the part-population that is formed by that age group the incidence is far higher - higher than RA which he wouldn't say was rare would he? 

The viewpoint of "getting off pred" isn't helpful. If you were a diabetic and were put on insulin to manage it would you be desperate to get off it because you have no symptoms any more? Or if you had hypothyroid problems would you chuck away the thyroxine because with it you felt fine? The same with high blood pressure being controlled with medication. No, the underlying disease hasn't gone away, it is being managed successfully.

In reducing you are not aiming relentlessly for zero, however nice the concept might feel. You are looking for the lowest dose that controls the symptoms - it isn't going to be 15mg, it should be a lot lower, but in order to get there you have to be canny about how you do it. You have to go slowly - you cannot use a sledehammer to crack a hazelnut successfully. You can use it - but you are very likely to end up with crumbs.

Once you are below 5mg you are taking less than your body makes naturally and the risks are far less. Many doctors like to keep patients at 5mg for several months - it makes the rest of the journey a bit easier since the hormonal feedback system that governs adrenal function takes time to settle down. Rushing below 5mg may cause trouble there - you might not develop a full-blown adrenal crisis but you could well feel very run-down and tired again.

I bet if you asked have they heard of "rheumatism" they will have heard of it, they just haven't heard of the proper medical term and, into the bargain, they think it is just part of old age and you have to put up with it. At least 2 members of my family had PMR 50-odd years ago and were never offered any form of medication - partly because pred had only recently been invented. I'm in my early 60s - and not that many of my age group have PMR at the moment. But by the time I am in my late 70s at least half of my age group will have PMR. For the first 5 years, when I was in my early 50s, my PMR was liveable with and mangeable without pred - I did see the GP because the hand and foot pain worried me that it might be late onset RA or something like that but I was "too young" and had normal blood tests. 

Neither have I Constance - and having had both I can add to the "they are two different things". 

I suppose it all depends what you call stress doesn't it? I've certainly not had work stress - my boss is the best in the world! I'm freelance and not dependent on my income. My husband had cancer 20 years ago, my mother in law lived with us and turned her nose to the wall and died when she thought he wasn't going to recover and I was left to cope with him and not-yet-teenage daughters alone for about a year until he recovered. But the PMR didn't appear until 10 years later. I don't think it was linked.

There are many putative triggers for PMR - stress is only one of many factors. 

Good morning Eileen and thanks.

I am  a bit confused.In the case of Diabetes  I know I have it for life so I would never dream of 'getting off' Metformin and Zacron or whatever. In the case of PMR it is my understanding that it is one of those conditions which,even if untreated,will one day spontaneously just disappear. I have a first cousin who 'got it' before I did and is now Pred free. It took two years and a few flares,but he made it. BY the way have any posters got relatives who have/had PMR.??

Another question,Eileen. If the body produces 5mg naturally and I take,say,4mg.to cool my residual inflamation,isnt that 9mg daily in my system? Or is there something wrong with the 5mg I am producing which causes my additional 4 mg to be inadequate.?? Or am I not 'getting' it?

I went thru' a dreadful time when my first wife died in 1985 and I said I would never get in that position again.  I am a great talker - most likely because I'm also a radio 'Ham' -  and I personally found this to be a great outlet.  It's a lot like this forum, knowing others are in the same position as yourself, and we are not that unique, and learning to 'live' with life's ups and down does give me an inner 'peace' and not get me depressed.  Maybe I am unique?

I just used diabetes as an example of something that isn't "there" while you are on medication, perhaps not the best, but in fact some type 2 diabetes can be reversed by weight loss and it is thought that in some cases there is a possibility of reversing it it by dietary means - still under investigation. However, by no means everyone has their PMR "burn out" in a couple of years. I know quite a few people who have had it over 6 years, I have had it 10 and it hasn't gone away yet! The literature reckons about a quarter get off pred in a couple of years - but are at a higher risk of developing a second bout. About half need 4 to 6 years for it to disappear and the remaining quarter need pred for much longer with a small proportion needing a low dose for the rest of their life. Some experts have postulated that it is an adrenal problem with impaired production of corticosteroid but there is no real evidence. 

Both my maternal grandfather and a maternal great aunt almost certainly had PMR - but it was in the early 50s when pred had only just been invented and no treatment offered as none was known. It was accepted as a part of getting older, "my rheumaticks", and you got on as best you could. 

I know what I mean but I don't know if I can explain it very well! The dose is best taken early enough to be present when or soon after the cytokines that cause the stiffness are shed in the body - but taking it then doesn't inhibit the production by the adrenals in the early morning in the same way but there is a big enough dollop present to mop up the cytokines.In the early stages you are taking far more than you need to do that and you are titrating down to find the minimum you need as quickly as possible. If you about that in small steps you have fewer distractions like withdrawal pain and get there quickly. If you go in leaps and bounds you get pain, don't know if it is the PMR back or your body objecting to losing the pred - go back to a higher dose and end up yoyoing the dose. The people who have used the very slow reduction patterns from the very beginning seem to have had smoother journeys down the doses and in some cases get off the pred - maybe they are the quarter with short lived PMR, maybe most of the problems really are the reductions rather than the PMR. Not a very adequate explanation that - I'll go away and research it and see if anyone has worked it out better! But apart from anything else - not allt he corticosteroid we produce comes in one single shot in the morning, the biggest bit is produced then but we produce some at various other times of the day.

Thanks Eileen,will write later

Not much to add.All it proves is that PMR and its causes and treatment can be quite complex. That was interesting--your point that we don't wake up with a shot of corticosteroids containing 5mg of the stuff.Logical really that it is a rather continuous process.

Also thta there are degrees of PMR and that not everyone suffers equally.

Anyway,I am doing fine on my carbfree regime and my mug isnt quite so soccerball in shape and I have lost some weight in just a few days.

I have reduced to 4mg and am feeling it a bit,but so far havent resorted to Paracetamol. I do remain fairly confident that stress does indeed play its part in triggering this and other conditions.We may of course inherit a weakness in the immune system to begin with. They say the enemy always strikes the weakest point.

Thanks again Eileen for being the rock to these discussions. You are greatly appreciated.

Don't rock too many boats! Dietary change is fairly drastic - don't mess about too much with your dose until your body has settled on its new fodder.

If you are on diabetic meds, please tell your Doctor you are eating no carbs. Carb are found in all plant based foods

Strangely enough my blood sugar hasnt changed that much,even on no carbs.In practice it is almost impossible to have a no carb diet. As twigjean mentions,carbs are found in all plant based food..I do eat peas,greem beans,cauliflower and tomato.I am feeling very well,and surely that should count for something.I do check everytthing regularly,so I hopefully wont do anyhing silly.

I have replied to Eileen.It is directed at you too.Just didnt want to duplicate my post/Thanks.

Has anyone suffered from extreme tiredness.  I can sleep 13-15 hrs per day - and that for 3 1/2 years.  My nickname is "Zombie".  

Pre-pred I had to be in bed by 9.30 or I hadn't a hope the next day! I went even earlier given the chance and it was an effort to getout of bed before 9am. I probably would have slept til then if my husband didn't insist on being up at 7am to make a cup of tea which he drinks in bed - after coming to bed about midnight. Since pred it has been marginally better in that I don't SLEEP as long but it is only very recently that I have managed to stay awake enough to do anything beyond 10.30. If warned in advance I can get up before 9 - but it is very unwillingly!

Here in the States we get good diabetes education. I had diabetes before PMR, now it's worse, as predinsone makes one more insulin resistance. The liver supplies glucose if one hasn't eaten enough carbs. I eat between 9 - 12 carb serving daily. ( a carb  serving is defined as 17 grams.) 

Hello Jean,

Yes,I was told by my GP to expect my Blood Sugar to be less well controlled whilst on Pred.for the reason you state..That has in fact occurred.I have moderated my stance on 'no carbs' to' few catbs' as I was beginning to feel a little strange. I believe breaking the 5 mg barrier is significant as I am less moon faced in only a few days on 4mg.

My overall treatment in UK for all my chronic conditions has been excellent.\The NHS has done me proud.

No carbs means all you can eat is meat and fish - and there are ethnic groups that do and are perfectly healthy as long as they have a fairly high proportion of fat included (Inuit and Mongols spring to mind). Such a diet is also used in certain forms of severe epilepsy and it can change someone from having hundreds of seizures a day to back to normal within days!

Changing from a "normal" western diet to very low carb requires a week or two for the body to adjust and go over to using fatty acids for metbolism - and in that time people often do feel quite strange, describing the feeling as being as if they  have flu. I probably eat about 50g of usable carb a day - as compared to the usual western diet which probably has 200g usable carbohydrate or even more. By usable carbs I mean the real carb in a food - bread for example is only about 50% carb so a 60g roll contains 30g of usable carb. 

The dose at which people start to lose the pred fat varies - for some it starts to happen at 15mg, for others it waits until all the pred is out of their system and of course there is everything inbetween!

Yes,Eileen,I found out I need some carb.I just had to add one wholemeal roll to my protein and fat to feel normal.I am continuing at 4mg though and ,touch wood, I am feeling 'normal'.  No doubt about it,I am losing the' football face'.We look at ourselves so often I suppose,that we do really notice even small changes.It is very disconcerting to see the face you have lived with for ever suddenly change so dramatically. 

On the whole,though,I feel that progress is being mad.

My excellent GP introduced me to Pred by saying  ''Pred is known as a 'dirty drug.'That is why we try to get our patients off it as soon as is practicable'.

Dirty maybe - but I'll take the rough with the smooth thanks!!!!

My "eureka" moment was when I could see my collarbones again! And now I have (almost) long hair - I don't want to cut it now ;-)

 

Hallo Eileen

If I have read your comments correctly you have had PMR for over 10 years.

If that is correct, and you are still taking pred, what hope have we relative new comers?!  Do you still hope that the PMR will one day disappear (as one hears occasionally)?

I did have PMR for at least 5 years before it got really bad and I then spent a lot of time researching what it could be and deciding was actually due to a comment made in a medical blog about "does this lady have PMR - must do because the pred worked..." and I looked it up. The GP at home and a consultant were unconvinced but another GP was - so now I have been on pred for 5 years! But I did have a nasty period a couple of years ago when I was switched to Medrol which was useless for me and I was back to the start again. 

In 3/4 of people PMR does disappear in up to 6 years - so the question remains whether I might have been better had it been treated immediately. Or - which is very likely - do I have GCA, just it hasn't reached my head since I presented with a few very GCA symptoms but the arrogant rheumy didn't ever ask about that and I was never on a very high dose, just for a week or so.

I know ladies who were off pred in 2 years, one had GCA and was off pred in 2 years! Several who took 4 or 5 years. Yes - it DOES go away, honestly. 

Do I hope it will go away? I suppose I do but at present I am happy on 4mg, I have no problems with pred at all, 5mg would be fine too and I do feel marginally better at 5 plus it would cost me a bit less (1 tab instead of 2 so half the price, we have co-pays here in Italy).