PMR Remaining in body even after remission

That is why it is called 'remission'.  No cure as yet.

If you have one autoimmune problem you are more likely to develop another than someone who hasn't. Fatigue is common to almost all autoimmune disorders. And it is pretty much accepted that PMR and GCA are caused by an autoimmune problem that damages blood vessels, causing inflammation (called vasculitis) and reduced blood flow because the diameter of various arteries is reduced - like furred water pipes. 

You have one immune system but it has several executives doing different things - just like a factory. If one bit is not working properly it often affects the functioning of another department. And once the systems are a bit worn - they can be repaired and continue to function until another cog breaks down. After all, everything has aged a bit in the meantime.

Dear MrsO, you've mentioned 'anti-inflammatory ' diet again, I mention again because I'm sure this came up earlier but it has not made a place in my head or computer yet. Sorry, I ramble!

in its simplest terms what are the bad boys in this diet . . . . What are the major items or groups to be careful of or avoid.

thanks . .

Some people say that the nightshade vegetables (tomatoes, peppers, aubergines, potatoes) are "bad". Several other things are demonised but quite a few on the forums have tried all the options with no obvious improvement. I certainly didn't - except to find my diet badly restricted so I went back to eating most things except wheat - but I have an allergy to something in the wheat structure anyway, not gluten because I can eat other gluten-containing grains. I was on a gluten-free diet because of the allergy (only way to reliably omit wheat in the UK) when the PMR started so I don't blame gluten either. I think taking the anti-inflammatory diet as a postive action is better than omitting a lot of so-called baddies. I think many of us have experimented to find what doesn't agree with us - and the results have been different and that is a common thing in PMR. We develop it differently, we respond to pred differently and we have different journeys with it.

Oily fish is good and I know MrsO eats it 3 times a week and notices a difference if she doesn't. She also cooks a lot with turmeric. Not sure off hand what else she uses - she'll be around with an answer soon!

Thank you and I can align with what you say. I do miss proper bread but I am better of without it. There is no doubt my version of the so called Mediterranean diet is best for me. If I stuck to it I would be better but the lure of  drink and a few nuts is overpowering. And who wants roast beef for Sunday lunch without a roastie and bit of Yorkshire . . . . no hope really.

but I do know that eating properly makes an enormous difference.

Hi David, at the risk of boring those who have read about my anti-inflammatory diet before, here goes:

I avoided all processed meats and sugar.

I reduced carbohydrates such as bread, parsnips and white potatoes (the latter can be substituted with sweet potatoes).  Apart from adding to the risk of steriod-induced weight gain, such foods can also turn to sugar in our bodies and could add  to the risk of steroid-induced diabetes.

I cut out coffee and alcohol (never had much of the latter anyway so not a problem for me.  Together with sugar these can stress the adrenal glands which are already being suppressed by the steroids.

I concentrated on eating three servings of oily fish a week (sardines (with bones - good for our bones), mackerel, salmon, trout), and if I veered off oily fish in particular I would notice more pain/stiffness appearing.  I also included lots of beetroot, garlic and added turmeric to suitable meals such as risottos, casseroles.  Asparagus, garlic, fennel and melon are considered diuretic foods, so can help to reduce any possible fluid retention from the steroids.

We had a dietitian talking at one of our support group meeting and she that low GI foods are recommended since high blood sugars are pro-inflammatory.  Low GI choices include oat based cereals, wholegrain/granary bread, noodles, pasta, basmati rice, pulses and legumes.  She added that phytonutrients in plants, predominantly flavonoids, are also anti-inflammatory substances.  These are found in cruciferous vegetables, berries, soya, red peppers, tomatores, beetroot, carrots, green and black tea......and the best news of all 70% dark chocolate!

The dietitian also talked about herbal medicine and how some herbs are known to be good at reducing inflammation, such as turmeric, ginger, garlic, chilli, basil, cinnamon, rosemary and thyme, whereas care needs to be exercised and doctors' advice sought before taking Boswellia, Liquorice Root extra, Willow Bark, Cats Claw and St John's Wort.

 

With regard to the last sentence, I should add how important it is to always check with your pharmacist for compatibility with steroids before taking any herbal preparations or over-the-counter drugs.

David, although I tried to stick to anti-inflammatory foods and avoided all known pro-inflammatory ones throughout my days on steroids, of course they did not cure my PMR/GCA (nothing does at present) but over the 5.5 year on steroids I certainly noticed a difference in my pain/stiffness levels if I veered off it for any length of time.

Hope that helps - sorry about the alcohol!!!!

MrsO

 

No, mercifully NOT a doctor! I went to medical school - and then realised that, no, that wasn't me! I've worked in the health service both in the labs and as a research technician, went to Uni and got a degree in physiology (the physics of biology) from a medical school department (whole body physiology rather than anything more esoteric) and have worked as a translator in the medical marketing world for many years - so learned how to explain things in rather more sensible English than medics tend to use. In fact - I do take some pride in being able to make most things understandable to most people . It works both ways - not only do I write about science and medicine for the man in the street, I write about how patients see things for the doctors doing research. I find it all very satisfying.

We are all very grateful that you are here for us non medical folks. You and the other knowledgeable people that contribute make this site better than 99% of the doctors out there.

Hi...I only know from my own experience.  I was also misdiagnosed (Lyme) for one year before finding out what was really going on.  Because I live in NY I was fortunate to see Dr. Harry Spiera.  He is the doctor who originally "discovered" PMR and wrote the original paper on this autoimmune problem. He told me that you start at a higher dose to get things under control and then slowly reduce the amount until you are taking just enough to allow you to live your life.  He said that whether or not you took 30 mg of prednisone or 10 mg of prednisone you would have the same good outcome (the disappearance of the pains) and that I should gear myself to get to the lowest dose that allowed me that quality of life.  For me I started at 30 but came down by 5 mg a week for two weeks to 20 and then 5  mg a week to 10.  I was on 10 for a few years.  In year 4 I started to reduce by decreasing very slowly.  One mg reduction a week (week one 10 mg, week two 9 mg, week three 8 mg and so on).  At 5 mg I was able to have good quality of life.  After that it took many months to be able to wean myself off the meds.  In the last month or two I was taking 1 mg a day and then 1 mg day one and .5 mg day two.  Sometimes I felt like some of the symptoms were coming back and so I had to increase by a mg or 2 for a while.  It just has to be done very slowly.  I think this is because once you take prednisone for a period of time your body stops making its own cortisol.  Then when you come off the predinisone it takes your body a while to start producing cortisol on its own.  Unfortunately, for many with PMR who have been on predisone for a long time, the production of cortisol never really starts up again. Hope this helps a little.

 

As I explained above, the PMR is not the illness, it is the symptoms of an underlying disorder of the immune system. The pred ONLY allows you to manage the symptoms until the autoimmune disorder burns itself out - it has not effect on the real illness at all, so far there is nothing that does. You start on a dose that is enough to control the symptoms on almost everyone and then reduce that dose SLOWLY until you find the lowest dose that controls the symptoms acceptably. Too much is not good for you, too little is pointless as you have all the side effect risks of pred with none of the benefits. 

If you are trying to reduce from 10 to 5 in one step after so long on pred you will have problems with steroid withdrawal - and possibly because you missed the right dose and the symptoms return. In your case, the "optimum" dose could be 6mg - but you missed it on the way because you took a shortcut. No reduction should be more than 10% of the current dose and for many people even a 10% reduction is too much, particularly at lower doses.

If you follow this link to another thread on this site you will find further links to sites with good, reliable, medically checked info from both doctors and patients, all presented understandably. These links are in the first post and in posts 4 and 5 you will find a reduction scheme that slows the steps down to a minimal level and has been successful for many already. It got me from being stuck at 9mg to now 4mg after 5 years on pred although I have had PMR for 10 years now.

But don't let that fact upset you - you will find stories from people who were off pred in 2 years when they went about a slow reduction and of course there are some who didn't have a reduction problem. The autoimmune disorder does eventually die out and stops causing the symptoms - then you are able to stop taking pred altogether. About a quarter of patients get off pred in a couple of years, about half take up to 4 to 6 years and the rest need much longer term low dose pred.

It has been considered in the last few years that maybe larger bodies may need a larger starting dose - but that is more that 15mg, which is the generally accepted starting dose as being enough for most and avoiding the side effects found at higher doses, may not be enough and perhaps 20 or even 25mg would be better for them - but not for everyone.

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

The final link in the first post is to a paper from a top UK group about the diagnosis and management of PMR and GCA which you may find interesting - it is aimed at GPs to help them manage patients in their practice without sending them to consultants.

"...Dr. Harry Spiera.  He is the doctor who originally "discovered" PMR and wrote the original paper on this autoimmune problem"

He may have been the person who associated the autoimmune problem with PMR symptoms. He is, however, not the doctor who identified PMR first. PMR (formerly called "senile gout" if I remember rightly) was first named and described by a Dr Bruce in Scotland in 1888 and giant cell arteritis 2 years later in 1890 by someone called Hutchinson.

When you are on a higher dose of pred the feedback system governing the production of cortisol registers the fact there is enough corticosteroid to support the system circulating and doesn't prompt the adrenals to produce more. Once you reduce the pred dose below about 8mg this is less than the body makes naturally and it has to start to produce some itself. At this point the reduction should be very slow to allow the complex endocrine feedback system to readjust - it is less that the adrenals don't work as many people think, it is much more that the fine tuning of the hormones takes time. This is the case after just a few months on more than 10mg/day. In the majority of people with PMR, reducing the dose very slowly allows this adjustment to be made and they taper to zero successfully. I have "met" hundreds of current and past PMR patients and know quite a lot of people who are off pred successfully after several years - and only one who is now on 5mg pred for life because her adrenal function is impaired - but she has several conditions, not just PMR and GCA. As I said in my other post, about a quarter of patients remain on pred for more than 6 years, but a large proportion of them are able to stop pred eventually, only a very small number have to take pred for life.

However - I'm very pleased to discover there is someone in the USA with a good doctor because we have had many members of all the forums here in the UK who have struggled to get a diagnosis and then have been put on rapid tapers over acouple of months, doses that are far too high and doses that a simply useless because they are too low.