I'm surprises that it doesn't go away untreated more often. Years ago a doctor told me that the human body had great 'self correcting' properties when things go wrong.
I've found a bit of conflicting advice on exercise/rest. In my case I keep active during the day (a bit uncomfortable) and doing nothing in the evening (feels much better). I can't seem to work out if I feel better in the evenings because I've been active or because I'm just resting.
Can anyone here expand on this advice which I found a bit odd:
Fats are an essential nutrient. People should avoid some types of fats, such as trans-fats, but many good fats exist, and people with PMR should include them in a balanced diet.
PMR is acknowledged as a self limiting disease - and we do say that regularly on here. ..and yes it can -and does go away on its own without treatment in some cases. Probably more in the past when it was regarded as old age issues and not treated… however things have move on -and this from another site which is probably a more accurate statement on duration of disease.
PMR is usually a self-limiting disease. If untreated, patients will have an impaired quality of life. With early diagnosis and correct therapy, patients have an excellent prognosis. The average length of disease is 3 years. However, exacerbations may occur if steroids are tapered too rapidly, and relapse is common, affecting up to 25% of all treated patients.
As we also say -Pred does nothing for the underlying disease-all it does is control the inflammation cause by an immune system which is not capable of regulating itself as it would in normal circumstances. ..and therefore cannot in the words of your doctor -self correct itself.
As for good fats/bad fats -plenty of info online-if you search - the BHF site always has articles on the subject. This is just one article -
The ‘condition’ of the pain of PMR will go away eventually for anyone, however pred reduces the awful pain. The PMR does not ‘go away’ as such, it just goes into remission.
Regarding fats, monounsaturated and polyunsaturated fats, are essential for a healthy diet and come primarily from sources like nuts, seeds, avocados, olive oil, and fatty fish.
I guess most people on this Forum with PMR would probably agree that PMR has a mind of its own, and will go into remission (or not) only when it is ready. In my case I was on steroids for just under 8 years before remission came along, and there are quite a number for whom their PMR is chronic. Also, it doesn’t really matter what GPs or Rheumatologists might say, as even they cannot predict the course of the condition.
Yes, some are fortunate enough to get into remission in a year, but I suspect that is the exception to the rule.
As for exercise, I carried on playing racquetball, but nothing like so competitively as previously. If I did too much physically, then I had to rest. I think most PMR sufferers ultimately find out the hard way what they can or cannot manage by way of exercise. You do need plenty of tlc!
As for diet, I just concentrated on reducing carbs to ensure I did not put on weight.
I guess most people on this Forum with PMR would probably agree that PMR has a mind of its own, and will go into remission (or not) only when it is ready.
My doctor thinks that it should go into remission when he says it should ☺️
I'm suffering from information overload at the moment. There is so much out there on different sites. Everyone has different views, but this just reflects what works for them.
I'm, sort of, working out what suits me and am grateful for everyone here's input, even when my posts may seem a little crazy!
You wrote, "My doctor thinks that it should go into remission when he says it should"
I've had PMR since the end of 2009, and was started on 15mg per day of Prednisolone in July 2010. Since then I've more or less self-managed my Pred dose as I've reduced (very slowly) over the years, and I'm currently on 4mg per day. However, when I saw a rheumy for the first time in 2023, the first thing she said to me was, "You don't have PMR anymore!"
To which I instantly replied, "Have you told my PMR that?"
Needless to say, we didn't see eye to eye much after that, although she did write a nice letter to my GP in which she said that I'll probably be on Pred for life.
So you're right, PMR does what it wants, and we have to put up with it for however long it chooses to be active.
Well, I think you are correct to work out what suits you, as we are all very different.
As to “my doctor thinks it should go into remission when he says it should”, I suspect he may not know as much about PMR as he implies! I wonder if he has a crystal ball? It is the PMR that decides when to go into remission, and it doesn’t really like to be hurried.
We all get to learn more about PMR as we travel along the journey, so I’m sure you will find out what is best for you.
When I told my sister I had been diagnosed with PMR she said "I had that and it went away on its own in a year"! She didn't even go to her GP. Lucky sister!
We remember our mother being told she had "Rheumatism" when she was in her 60s. She lived to 97 and didn't suffer with it all her life, so we wonder if she had PMR which went into remission.
It isn't rare for it to burn out and go into remission - it used to be said that about 95% of patients would get off pred sooner or later though it might return after a few years, I know several who have had episodes 2 or even 3 times.
The pred has no effect on the actual disease process - it is a management strategy to manage the inflammation that causes the symptoms: no inflammation, far fewer symptoms. PMR isn't the disease , it is the name given to a set of symptoms that are caused by an underlying disease process. There are several, including other rheumatological conditions that present just with PMR symptoms, and even certain cancers - all listed here, rather than me typing them all:
I would suggest that you stop trawling the internet where you are getting conflicting and - it has to be said - often inaccurate information. We really have sorted out all lot of the guff to be found about PMR - most people have never heard of it so how come they suddenly know how to manage it beats me!!!
That bit you have just quoted about fats is irrelevant really. It is "healthy diet" woo. Trans fats are the bogey man:
"Trans fat, or trans-fatty acids (TFA), are unsaturated fatty acids that come from either industrial or natural sources. More than 278 000 deaths each year globally can be attributed to intake of industrially produced trans fat. Trans fat clogs arteries, increasing the risk of heart attacks and deaths."
They were used a lot in manufactured food and while some countries have banned them from foods outright, others have just taken the soft option of encouraging less to be used.
Our advice is to cut carbs drastically - especially processed foods which is where most "bad" fats hide. Cook from scratch, using natural products. It was said butter is "bad" and you should use other things - in fact, it is the other way round!! Fats that are hard at room temp are to be avoided - and oils substituted. Now there is a load of waffle that seed oils are bad for you, not really. They aren't good if you heat them to high temperatures but used in salad dressings they are no worse than olive oil which is "good". The primary problem is that seed oils are CHEAP and contribute to longer life of manufactured products - and THEY are not good for you if that is all you eat. They are used with emulsifiers in manufactured food - so all these additives in foods in the supermarket are the things to avoid. Look at the list of ingredients - if your granny wouldn't recognise it as having been in her kitchen it probably isn't good for you!!
If you want to learn about how to read labels - look for Sophie Morris online! That will "healthy up" your diet if you listen to her advice!
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