I went to a meeting on this topic yesterday called 'Measuring what matters' and the people in the audience came up with some good and varied questions, but it was only a short session and couldn't cover everything. So I'm throwing the question to a wider audience to see what you come up with. What would you like to know about PMR that we don't know? Burning questions. It must be something that can be scientifically researched.
Mine would be How do you know the optimal amount of steroids to take? The tapering plans are too vague and the only possibly useful test for inflammation, CRP, is also unreliable. Other good questions included: does a delayed diagnosis mean the PMR will be harder to shift? (My hunch is yes having been in thet situatin and now a very long termer) and is it the steroids that cause muscle weakness or the disease itself? An obvious one is How long does PMR last? We hardly know anything at all and what little we thought we did know, turns out to be wrong, a myth, and a mystery
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How to identify/deal with adrenal insufficiency as steroids are reduced would be one of mine - sometimes hard to tell whether a flare is starting or it is just that the adrenals are slow to come back to life or don't even want to. Is there a particular supplement/diet can can support adrenal recovery - nothing will do it on its own and I'm sure it will be a wide-ranging answer if there is one. Thanks, Tango!
No - other than the usual advice to eat a good healthy diet, there is nothing that will specifically prod the adrenal function, whatever the WWW tries to tell you! Only consistently low levels of pred in the blood at about midnight will send the messages to the HPA axis (hypothalamus, pituitary, adrenals) to tell it to signal to the adrenals to produce cortisol next morning. Nothing else!
If I remember rightly, Ashwaganda is not recommended with pred - which after all is being taken partly to suppress the immune system's deranged action. It doesn't want boosting!!
I've been meaning to research it at is supposedly good for all sorts of things post-menopause though, including maybe bones. I know someone who swears by it. As I get older and more cyncial I'm beginning to think about alternatives to what we've always been told. I'm no anti-vaxxer or anything daft. just being more open-minded. After all, I cured my diabetes through diet, which is something most doctors said was impossible to do a decade ago.
I would be interested in a study of a group of people with long term PMR being put on a strict diet of no sugar, minimum carbs, no alcohol, maximum supplement doses of D3, K2, Ca, Omega3 - come to think of it, exactly the diet I’m following at the moment 🤪
Hi CocoaChanel - I’m also trying keto, so far (7 weeks in) things seem pretty good, reduced to 5.25mg which is the lowest dose in nearly 3 years. How are you doing on the low carb keto style way of eating?
Hi Pinkcrocs I was on 7.5mg in Nov 24, now 5.25mg, lost around 8lb in weight too. Keeping carbs under 30g per day, drink lots of water, eat more protein and good fats.
Hi Pinkcrocs - my GP prescribed Adcal from the start and I take D3 & K2 plus magnesium and omega 3. I have one zero high 5 electrolyte tablet in a morning dissolved in water, this helps ensure you don’t become deficient in certain vitamins and minerals your body needs. I have fage 0% yogurt for breakfast with blueberries, chia seeds, and a little full fat single cream, lunch is sometimes skipped and I have dinner around 5pm, sticking to good quality foods - last night I made salt n pepper chicken (and chips for hubby) I had a few chips which kept my carbs under 30g. I enjoy the occasional vodka, lime and soda.
Hi, I’m quite new to PMR - diagnosed in November. Have been pain free since my first dose of pred - started at 15mg, now at 10mg, going down to 9mg in 10 days. I was already on a low carb diet just to keep my weight under control and since diagnosis have totally cut out alcohol as well. Having very recently read the ‘glucose goddess’ book I’m now going to implement some of her ‘hacks’. The only difference to before PMR is I feel tired more quickly and often drop off in the evening watching TV - unheard of before. I feel that my diet etc is having a positive effect but will never know as there doesn’t seem to be much interest in preventative measures generally - no money in it I suppose?
I’ll be interested to see what happens when adrenals become involved.
Hi CocoaChanel - you appear to be heading in the right direction and making good progress so far, it’s definitely worth eliminating certain foods and see how it goes. I had experienced the awful fatigue too - I still enjoy early nights and getting enough sleep is important with PMR. I follow Richard Matthews on Facebook he reversed his PMR by fasting and adopting a keto lifestyle. I’m giving it a go and remain hopeful that I get the results I expect. If I don’t I can’t say I didn’t try. Good luck with your PMR journey it can be a bumpy one at times. I have only seen my GP once since diagnosis so my journey has been a learning curve, this forum has been very helpful and informative.
Wow, you’ve had PMR for 3 years and only seen your GP once - that’s bad! Mind you, I can see that happening to me. My GP seems to have it in her diary to ring me every 6 weeks. She then writes a (not totally accurate) report in my NHS app. I was told at reception that if I don’t make an appointment then I won’t be summoned until my annual checkup around my birthday. This must be something new - never had an annual checkup before!
I’m going to look up Richard Matthews👍. I did try intermittent fasting a few years ago - eating only 5 - 8pm. It worked well and I had no problem sticking to it but then I started to feel mentally different - mainly paranoid. By accident I came across an article saying fasting can affect your mental health so I started to eat at lunchtime too. The paranoia is no more 🤔. I suppose you could say I still fast but not so fiercely.
Yeah only once and haven’t had my blood work done since March 2023. Moved house June 2023 - haven’t met my new GP yet. It’s good your GP is keeping in touch with you, an annual check, what’s that? 😆 definitely find Richard on FB and read his files, it’s interesting even if it doesn’t work for everyone as we are all individuals who respond differently in our own PMR journeys. The fasting clearly isn’t for everyone either and we learn by trying rather than not giving it a go. I’m 3 years wiser, know my body, know the signs of a flare and understand how I can manage it. Onwards and upwards.
And me! I did this on day one 9 years ago. Doesn't seem to have helped me PMR wise although I didn't gain weight. On the other hand I may have been even worse..... we'll never know.
Thankyou for participating on our behalf and also for asking this question, much appreciated!My two pennyworth:
Medical and scientific ethics (rightly, in my view) require doctors, when undertaking research, to 'comit to treat' people when there is a know effective treatment - eg steroids for PMR. So they cannot conduct the 'gold standard' random control trials on different treatments but a very short time, usually a week or so. This means some promising approaches eg fasting, are poorly researched and cannot be recommended for treatment. However, there are patients who, either having experienced steroids, or being anti steroids from the outset are prepared to try different approaches. I would like to like to see more research undertaken with these people (they are generally well informed for consent purposes and would not be denied conventional treatment). It would, at least initially, require a 'case study' approach, with nationally collected data to have wider value. Also, I would like to see much more attention paid to the collation/ use of personal (aggregated) data held by health services and elsewhere: demography/ symptoms/ treatment/ remission/ lifestyle/ genetics etc . 2% of pop has PMR, a huge sample for 'big data' scientists to get to work on (there is a wealth of information held on this forum which AI could make sense of) Ethical problems with this too.
Maybe using DNA or blood group to assess the amount of pred and whether other drugs such as methotrexate are going to cause side effects. Our surgery is currently part of a study I think from Manchester uni which uses dna to assess the best drug for least side effects and effective dosage for some conditions such as statins, PPIs and opiods when they are newly prescribed. It would be very helpful if they could do that for pred! I personally think the effect of blood group on how our bodies respond to medications deserves more research.
What if any supplements are needed or might help? I know a good diet is optimum for most vitamins and minerals but it's still confusing when there's conflicting advice around (and we're supposed to avoid carbs). A nutritionist advised me to take calcium citrate rather than calcium carbonate (which is the cheaper version in AdCal) as it's more easily absorbed (the version I take also has vitamin D). And I've heard that there's a lot of B12 deficiency around (although a vegan friend said a daily teaspoon of marmite helps this). As our bodies often feel tired and under stress, can any supplements help and what are the signs that we might need more help, whether food or supplements?
I would be fascinated to know what changes as we age that means our ability to deal with stress decreases and thereby allows these conditions to take hold. Also why does our autoimmune system go haywire?!!
I've had a burning question for years regarding the impact of the bioavailability of prednisone. Research into developing a test to determine this factor in individuals prescribed prednisone is needed. I have had to take what one would consider double a 'normal' dose of pred throughout my 10 year journey with PMR, which is now in remission, and that need continues with my battle with adrenal insufficiency.
In my humble opinion, there may be many like me, struggling to reduce prednisone unsuccessfully because of not fully absorbing the medication. There is little research on the topic to date, but there is mention of an absorption rate of 50-80%.
As with many others, I have not had access to any rheumatologist, let alone one knowledgeable in PMR until recently. In the spring I will be discussing switching to prednisone injections and an also awaiting an appointment with an endocrinologist.
I would like to know how can we find out what the individual autoimmune system problem is in our bodies. Then we might stand a chance of fixing it in time. Of course Prednisolone is not the cure, just a way of making life more liveable for everyone with PMR.
If they could discover how vasculitis goes into remission and other auto immune diseases don't it would help us as it could be speeded up. And help other auto immune conditions eg ms if there is common ground and they could be made to go into remission too.
Another question: Is it OK to have a little pain in the mornings before you take your prednisone? In other words, does that relatively small amount of inflammation lead to any damage? And another: can PMR and/or prednisone cause blood clots (I had them about 7 months into the disease)?
Some people are never pain-free and early mornings ar the most likely time to be aware of it before the new dose of pred works its magic.
But if the reason for the pain is the dose of pred is too low and that inflammation slowly but continuously builds up in the tissues, you run the risk of ending up as you were at the start, Increasing pain can do damage - if it remains steady, probably not so much.
My question : Could the onset of PMR be an indicator /precursor of a future cancer diagnosis anywhere in the body ? i.e. could the PMR be the body's reaction to responding to something abnormal occurring in the body? I have a vague recollection of a post quite a few years ago in a similar vein .
It depends what you are really asking. PMR is not the disease - it is the name given to a set of symptoms due to an underlying cause and there are several possible causes. Amongst them is the possibility of a couple of cancers as well as an inflammatory arthritis and other disorders. Once all those have been ruled out, PMR as we mean it is due to an underlying autoimmune disorder that causes these specific symptoms and which is highly pred-responsive.
So yes, PMR MAY be a symptom of an underlying cancer and there is an increased likelihood of a cancer diagnosis in the first year after the initial diagnosis. But not really because a cancer has developed but because the PMR symptoms were due to that underluing cancer and it wasn't diagnosed at the start. But that is relatively rare.
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