pmr without steroids : I’ve just been diagnosed... - PMRGCAuk

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pmr without steroids

19 Replies

I’ve just been diagnosed with pms and doctor wants me on steroids, but I’ve asked for a month using natural methods ( turmeric, d3, omega 3, healing, and homeopathy) has anyone out there managed this condition without steroids?

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19 Replies
SheffieldJane profile image
SheffieldJane

Nothing works except Pred. We all understand the desire to try not to take steroids but they are the only drug that has any impact at all, initially. All you do - many have tried - is to delay the inevitable, and to allow the inflammation to build up further. There are ways to alleviate side effects, should you experience any.

HeronNS profile image
HeronNS

If this method worked we'd all be using it! There are things we can do to improve our general health which is all to the good, but unfortunately SheffieldJane is correct - there's nothing besides pred for dealing with PMR symptoms.

Bcol profile image
Bcol

As already said by SJ and HeronNS, nothing works for PMR other than Pred and you will only be delaying the inevitable. Also worth considering that if you do delay then you may need a higher dosage of Pred and for longer to get the inflammation under control.Welcome to the forum, lots of information in FAQ'S to peruse when you have time but don't try and take it all in in one go.

Bridge31 profile image
Bridge31

Sadly no.

Kendrew profile image
Kendrew

Hi Starbird,

Unfortunately, as already advised, there is absolutely no alternative treatment to steroids at this current time.

None of us here want to be on steroids, and like yourself have spent many hours at the start of our diagnosis, searching for potential alternatives.

You'd think there'd be something that might work....particularly when you consider all the alleged 'anti-inflammatory' foods, spices, supplements, etc there are.

These may help a little, but don't even come close to producing enough of an effect to eliminate the amount of inflammation the PMR causes, and you certainly don't want to experience the consequences of that happening!

Steroids are most definitely a medication to be respected but having been on them for 4yrs myself now, I've done lots of research on both my PMR and my medication and now see the steroids as my ally in the fight against PMR, and not my enemy.

Yes, they can come with some potentially unpleasant side effects, but you certainly won't experience all of these (if any!) yourself, and many can be avoided, eased, minimised and in some instances completely eradicated by putting certain strategies in place, as I have been able to do.

I'm now down to 3mgs of prednisolone daily but tapering very slowly, and at the moment very successfully. (Fingers crossed 🤞)

Try not to be too anxious about taking the steroids. Most people 'manage' on them far better than they expect to.

Educate yourself as much as possible about your condition & your medication then you'll be better equipped to deal with any potential complications that may emerge.

The more knowledge you have, the more control you have over your treatment...and I don't mean by this, ignoring what a medical professional advises.....I mean being able to ask useful questions and being able to discuss your treatment knowledgeably and together, so you are part of the decision-making process too!

I personally would advise you to reconsider starting the steroids though .... a month is a long time for the inflammation to be slowly building up further and this may make it much more difficult to bring it under control. This in turn would mean a higher starting dose of steroids which you really want to try to avoid if possible.

There's so much reliable and well-informed information here and you can ask as many questions as you like.

This forum has been my guide and counsel for the past number of years and I know you'll find both the advice and support you require here.

Good luck with whatever you decide to do and let us know how you get on.

SnazzyD profile image
SnazzyD

In a word, no. Kendrew has summed it up really. Many of us are eating said diet as an adjunct to steroids or ate like that before diagnosis. I was gluten free and dairy free as well. The problem is that your autoimmune activity, whereby your body has decided to attack parts of itself, produces fresh inflammatory substances daily. It needs a powerful all rounder anti inflammatory like corticosteroids in your system for hours. This is to counter the inflammation to prevent further damage and possible progression to large vessel vasculitis or GCA which require much higher doses of Pred. Our own cortisol does exactly what we need but isn’t potent enough or in large enough quantities so we take a synthetic version of it at higher levels than our body would normally make. If we produced the right amount of natural cortisol to deal with this we might have the same positive result but the same side effect risk as Pred, hence people with Cushings disease (produce too much cortisol) have exactly the same issues as we can have with Pred.

Some decide to tough it out and deal with the pain but the pain is a warning that inflammation is at a level that the body is struggling with. If will power and resolve to live through pain were the key, many would get the medal but no relief. One might ask, why doesn’t Ibuprofen or Naproxen (Cyclooxygenase inhibitors) work well if it needs an anti-inflammatory? The problem is that inflammation is mediated by a number of different substances an non-steroidal ones only go for one type. Those in white coats have their beady eye on Interleukin-6 in particular and alternative drugs, non steroid biologics are often used in some cases. The trouble is it costs a bomb and because of the range of substances involved in each person’s inflammatory profile, it might not do the trick for them in particular even if it is a game changer for someone else.

So Pred is fantastic at what it does and has a long known history. Unfortunately doctors often tell their patients they have to have it and then put fear into them saying it’s a terrible drug. They don’t seem to know how to live with it and so leave patients to pile on weight and get diabetes which is avoidable with a low carb diet. Other side effects can also be dealt with and aren’t definitely going to happen, even the bone thinning. Many here can attest to that. It might be worth reading other posts on this question on the right of your page since it comes up regularly and quite understandably.

We are here all the way too.

nymima01 profile image
nymima01 in reply toSnazzyD

Well said! I didn’t know all this and I’ve had PMR twice! I did stay on a low carb diet both times (and even when I was off prednisone) and I maintained my weight with no problem! I had a good experience with prednisone and in fact I miss it once in a while because of my osteoporosis.

Gaz227 profile image
Gaz227

I tried all the natural remedies nothing worked except pred , but on a positive note I guess there is a wide spectrum of pain and symptoms , at the lower end with a high pain threshold who knows it my be possible , but you have to get rid of the inflammation in your body one way or another . Good luck keep us informed 👍🤞

PMRpro profile image
PMRproAmbassador

Now you have posted the list of related posts comes up - to the side on a computer, at the bottom on the phone. They will say it all. And it doesn't include my story - I have PMR undiagnosed and therefore untreated for 5 years. Pred gave me my life back.

It is herem in this thread:

healthunlocked.com/pmrgcauk...

I really don't recommend it - I was almost suicidal eventually and had a very restricted life.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Not recommended - and tried by a few. You may be okay for first month on alternatives, but the inflammation is likely to built up over time - months even - and then you will be in a pickle... and may need more steroids than offered today.

If left untreated correctly - could morph into GCA - a totally different and more dangerous beast...and you don't want to get acquainted with that.

Poetryb profile image
Poetryb

I would not do as you suggest personally but do agree that eating vegetables and tumeric, ginger, paprika and cayenne pepper is I believe a good strategy.

cranberryt profile image
cranberryt

I will add that in a recent discussion with my GP and my issues with getting the correct diagnosis, she asked if I had tried turmeric/black pepper and I said no. She said give it a try. If it doesn’t help that is more evidence we have that is is PMR and not any of the other myriad of arthritic diseases that likely would have some response to it. After 2 months on the highest dose I could buy… no change.

Koalajane profile image
Koalajane in reply tocranberryt

I gave up on it as well after 3 months and gave my remaining tablets to my neighbour to see if it would help her arthritis

Hello Starbird!💐sorry you are so poorly.I was in your position a month or so ago.

I desperately didn't want to take steroids either. None of us with pmr or gca would much prefer a non steroid route to health. Its a big shock getting the diagnosis and one has all that to deal with as well as being ill.

I joined this forum and have been helped and supported so much. It gave me confidence to take the pills. I felt no different afterwards for good or bad, but that night I could actually move my legs in bed. After taking the steroids my crying stopped.

Best wishes

X

FabricArt profile image
FabricArt

I think it is important to understand that while steroids take the pain away, they are not painkillers! To me, not taking Pred when diagnosed would have been like not taking insulin for diabetes. Others have been more eloquent, but please do all those alternate health things in addition—not instead of— pred. I have done slo reduction from 15 mgs to 3 now over 18 months. Can tell I am getting close to the end of this journey. But if I still need 1-2 mgs to stay pain free I will! Good luck to you.

in reply toFabricArt

thank you for your wise words, and to all those who replied. Good luck on being fully well again.

piglette profile image
piglette

Yes lots of people have tried without steroids, it is quite a common initial reaction. However I am not sure if anyone lasts for long without steroids, even homeopaths with PMR have given in to them. They are a wonder drug.

Brooklyn747 profile image
Brooklyn747

Sorry but honestly the steroids are the answer to p.m.r. and not much else will impact in such a positive way.

Iamfedup profile image
Iamfedup

Good luck with that!😆

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