It looks as though I've got PMR (blood tests showed inflammation markers up) so I've been given a few days of prednisolone to take - if they don't work, I don't have PMR. I only started taking them today, but I think they are working. I'm quite disappointed because the thought of taking steroids for the foreseeable future fills me with dread!
Has anyone tried alternative remedies, e.g. curcumin/tumeric?
Sorry if this has already been discussed elsewhere - I'm new to the forum and haven't figured out how to search for threads!
I doubt anyone has worked out how to search this forum for a specific question! I find google easier!
Turmeric may help and allow you to manage on a slightly lower dose of pred - but it is very unlikely to replace pred. Nor will anything else. Again, you can use dietary approaches to reduce inflammation and reduce the risk of weight gain and developing steroid induced diabetes - but they won't replace pred to allow you a good quality of life in the meantime while the underlying cause of what we call PMR chugs along in the background causing you a lot of pain.
I won't lie - you WILL find people claiming they are managing their PMR symptoms using diet, Chinese medicine etc etc. What I will say is that it would cost you a LOT of money to copy some of them. Since it is next to impossible to get reliably monitored TCM medications you have no idea what you are putting in your body. And since some of them have been found to have undisclosed content of stteroids that means you may be still taking steroids - which weren't monitored and which are at unmeasured doses.
Don't look on pred as bad - it will give you your life back and will protect you from the long term effects of unmanaged inflammation on your body. At PMR doses there are no significant long term effects:
or at least, apart from cataracts, none that wouldn't have happened sooner or later in any similarly aged population of people NOT on steroids.
Used properly, i.e. using the starting dose to get the inflammation under control (takes about a month usually) and then reducing the dose slowly and in small steps to find the lowest dose that manages the symptoms as well as that starting dose did, pred is like any other medication. They all have side effects - some people get some, other people get next to none, no-one gets them all. You have to do your bit too though - the pred manages the symptoms, the disease itself is still active and attacking your muscles leaving them intolerant of acute exercise. If you then decide to go and catch up with all you haven't been doing for the last x weeks you will find the PMR will bite back! Pacing and resting and lifestyle adjustments make a big difference.
I have had PMR for a long time, 14 years, I have been on pred for 9 years. I'm overweight - but you can't tell it is due to pred, I gained a lot of weight with both PMR and one sort of steroid - but by adopting a low carb diet I lost 35lbs of it. I have a good life and there is very little I can't do - I can do all I want to! I had 5 years of PMR without pred as I wasn't diagnosed and have been on pred since then - and NOTHING at all would persuade me to go back to that. Pred hasn't caused any obvious damage - no sign of cataracts, pred-induced diabetes or low bone density. Over time I have had positives - amongst others, fantastic nails for the first time in my life!!!
Thanks for this Eileen. I have my first 'reducing' appointment at the rheumatology clinic next Monday. Your beautifully clear explanation will help me when I tell them I tried AA and it made me very ill, I am not taking anymore, and I am not even going to start MXT..
I will visit the link you sent to MhairMP. As the saying goes 'Knowledge enpowers'
I couldn't take AA, either so I had 8 years altogether ( 2 episodes ) with just Calceos ( Calcium and Vit. D) to support my bones. All is fine. Very successful hip replacement 5 years ago.
I've taken Glucosamine ( 1500mgs. ) and Cod Liver Oil ( 1000 ) for years but no idea if they contributed.
I tried tumeric, did not see any difference. Asked my rhemy who said it is one of those alternative medicines if that is what you call it. It is one of those things that is of the moment it is meant to cure all ills, I don’t think so. I wouldn’t waste any more money on buying termaric. I don’t think any of us like taking predesolone, but it really is the only
thing that works for PMR. Most of us have had the symptoms that go with Pred but there really is no alternative. I am sure you will get some good advice on this forum which I have had. Take care 🌻
Pred is actually a wonder drug which unfortunately has side effects, but what drug doesn’t? If it is decided you do have PMR reduce really slowly, don’t overdo things, remember you are ill, if you start having the pain come back, stop reducing. Take vit D and calcium to help counteract the pred side effects. Have a Dexascan. Looking after your diet also helps but that is true of all of us with or without PMR.
The truth is there is no alternative to pred although things can be helped with gentle exercise, diet and a positive outlook.
I realise now that pred is the lesser of the two evils! I've only had PMR for a few weeks and already I've learnt how debilitating it is.
I'm 60, follow a vegan diet (we grow most of our own veg) and I have never been on any medication, apart from occasional antibiotics (I think that's why I'm so freaked out by having to take pred for the foreseeable future - but I'll just have to get used to the idea!
MhairiP, EileenH has given you some great advice. Prednisone you will learn to love to hate it. Sorry to hear that you are on our PMR journey. With Pred you can lead a very normal life. Do yourself a favor and do not try to rush your tapering take your time, you will end up taking less Pred in the long run. Good luck on your journey, stay positive and try to smile. It helps.
I seem to be doing all the right things - good diet, already take a vit D/calcium supplement, take gentle regular exercise (apart from the last few weeks - I couldn't move), and I'm regaining my positive outlook now that I'm getting used to the idea of pred - so fingers crossed I won't have to be on it for too long!
Thank you for the advice. I already have a love/hate relationship with pred - love how it acts so quickly to stop pain and stiffness, but hate the fact that it's a steroid! There's just no pleasing some people!
I have taken glucosamine as well, but at a higher dose, 1000 mg twice a day. I think it has helped considering that I've had OA nearly half my life and there's been very little progression of it since diagnosis over thirty years ago.
Great success for me in two parts -- A. After taking prednisone for week or so -- just to get the diagnosis (doctor wouldn't do any other way). Then NO pred after that. I did boron - turmeric and serrapeptase. Markers went way down in one month and even more the second month. B. Recently discovered baking soda -- 1/2 TEAspoon in 8 oz of water 2 x a day -- dramatic improvement. I mean dramatic!! If I had known about baking soda before, would have done that first. I started a blog entitled something like New Research Working for Me -- dramatic results. I always urge everyone to do their own homework as there are a lot of variables with each person and their situation. The short version of the research is that a University of Georgia scientific study has recently found that the baking soda changes the spleen (think its the spleen) from producing inflammation to becoming an ANTI-inflammatory organ.
I have been out of town with very limited internet so don't know what others are currently saying about it. One person I think was taking the baking soda and in two days had good results but I don't know anything other than that.
There are/is a group on a popular social medial site that is for people that do not want to treat their PMR with prednisone. You might consider looking into joining the group so that you can learn from their experiences on what works and what doesn't.
PS I am being vague because I don't want this comment to be removed for mentioning another website.
I really think that is over-egging that research a bit! Even the lead author says "don't try this at home". It was done in rats and only 12 humans - and healthy ones where it seemed to reduce the risk of developing autoimmune disorders.
There is a lot of use of "possible". "maybe" and "promising" in the reports - it is NOT a done deal by any means. And it is potentially risky for some patients depending on existing conditions.