PMR without Prednisolone: Hi I have been diagnosed... - PMRGCAuk

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PMR without Prednisolone

mtb210
mtb210

Hi I have been diagnosed with PMR for 4 weeks now but am looking at ways of curing this naturally. Ibuprofen just works but still takes me to midday before I can move without pain. I have changed me diet to more Vegan based and no sugars. Has anyone else overcome this without Pred? The Dr states I have to take Pred or I will cause more harm!

60 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

“The Dr states I have to take Pred or I will cause more harm!”...

the doctors’s correct.

Some have tried to manage without Pred, but usually find they do need steroids.

If you allow the inflammation to continue to build up (which will happen if you don’t take steroids) - you are never sure what further damage will be done.

Please think seriously about it.

PMRpro
PMRproAmbassador

Your doctor is right - the unmanaged inflammation that the pred deals with is also doing damages to the tissues in your body. Untreated PMR is thought to be more likely to progress to GCA and if that happens then you have the choice of very high doses of pred or risk losing your sight. And don't imagine that ibuprofen is a sweety that does no harm just because you can buy it OTC - its longterm use is implicated in kidney and liver damage. bleeding in the stomach and bowels and increased risk of heart attack. In fact, one lady I know, as instructed by her GP took ibuprofen and after 3 doses landed in the ED/A&E with a stomach bleed. If you are unlucky, it doesn't have to be long term use. It doesn't work for PMR anyway.

I am sure this was the initial reaction of most people on this forum. For me, it was made easier by the knowledge that my diagnosis was indeed PMR and I decided that all the things I needed to do to feel better (sleep, exercise, be relatively stress-free, good food) were not going to be possible if I was in pain.

The threat of GCA was real and I feared the inflammation was going to inflicled more damage on my body.

This said, you need to make your own decision and be comfortable with it. Eveyone here is copying in their own way. I wish you all best.

This is a common desire and I’m not surprised; who wants to take Pred? However, so far, nobody has truly succeeded as far I can remember. Perhaps an improvement in general well-being (but not always) though pain is not significantly helped. Pred is there not to cure you but to stop harmful inflammation doing damage or possibly developing into GCA which needs high doses of Pred. That’s what I started with and I don’t recommend that experience. The pain is due to your inflamed blood vessels starving muscles of oxygen, so a potent anti inflammatory is required to stop it spreading to other larger vessels and avoiding the side-effects of reduced mobility. Normal anti inflammatories like Ibuprofen and their stronger versions don’t work. Many of us cut out carbohydrates as a matter of course to prevent weight gain and diabetes while on Pred anyway, so you’re starting well. Docs don’t prescribe Pred unless they have to and this is one situation where they think they must.

I thought I was dying from pre-mature old age before Pred. After pred all pain gone in 6 hours. I’m still trying to think of ways to stay ON Pred as long as possible! I’m only in 6 weeks now so I’m sure I’ll find something I don’t like about pred and will taper when appropriate. Still at 20, tried 17 1/2, quickly back to 20. I absolutely love modern medicine when needed - centuries of knowledge got us this far and I don’t want to go back.

DianeA1
DianeA1 in reply to OldGolfer

Hi OldGolfer, I'm in your boat!

I used to say, 'Don't get between me and my chocolate."

Now I say "Don't get between me and my Prednisone!"

All the best!

Slowday
Slowday in reply to DianeA1

Diane looks like you need someone to invent chocolate flavoured Prednisolone!!

DianeA1
DianeA1 in reply to Slowday

Oh yes, one can dream!!

Hello mtb210

I was taking about 1200 mgms of Ibuprofen over a 24 hour period before the PMR was properly diagnosed as well as paracetamol. After 10 days I had the most rampant oesophagitis and I had to call 111, as never been in so much agony in my life. They sent the paramedics out as they thought it was a heart attack. It wasn’t ... it was the ibuprofen! Never, ever will I take this again! Now on 40 mgms of Omeprazole daily to protect tummy from the Prednisolone. Don’t want you to suffer. Prednisolone is a lifesaver. Don’t think we’d all be here without it! Keep safe. 😄

Hildalew
Hildalew in reply to autumnlass

Natural, live, unsweetened yoghurt will also protect your tummy from Pred.

autumnlass
autumnlass in reply to Hildalew

Thanks ... yes I do eat loads of the zero sugar plain Soya yogurt and take strong probiotic capsules as well! 😊

Staplehurst
Staplehurst in reply to Hildalew

Does that mean you don't take Omeprazole Hildalew ?? I only take one every other day but worry about the implications of not taking it at all. It's been said that Pred can cause stomach ulcers and bleeds. However, Omeprazole I've been informed can cause stomach cancer. I'm finding every time I take an Omeprazole I get a headache...not sure if it is the tablet or not. I will take a look at the leaflet and see if headache is a side affect.

Anne

Kendrew
Kendrew in reply to Staplehurst

Hi there. Hope you don't mind me chipping in. I have been on pred for 16mths and managed to avoid taking omeprazole....so far! I'm able to take my pred after a good healthy breakfast which helps minimize stomach irritation, and also have natural, bio yogurt daily. Seems to be working for me at the moment.

You’ll be asking yourself why on earth you did do it sooner!

Your doctors will manage you very carefully- it’s a very well understood drug with regards to side effects. The sooner you get it under control the less you will have to take, and hopefully the less duration.

And if it’s a little longer- it’s a little longer! You’ll feel better- better quality of like for you and your family.

And honestly... hasn’t 2020 been difficult enough?😉

I say for this particular auto immune issue- be very happy and thankful- it just takes a bit of a mind shift- that’s all.

I really do think ( despite a few frustrations you may encounter it which can be over come and luckily you have this wonderful group of well informed ladies here to guide you through) you will be happy for how much better you will feel on the prednisone.

I don’t understand if you are offered a wonder drug you decide to take ibuprofen instead and also risk losing your sight.

yorkieme
yorkieme in reply to piglette

It isn't difficult for me to understand simply because right at the start I didn't know about this forum and the level of help that I would/ have received,the G.P. put me on 60mg with very little supporting advice and most of what I picked up about steroids frightened the life out of me.

My very first post on here was a ranting incoherent bundle of words to the tune of how can this drug be allowed etc,etc, Doctors should be prosecuted blah!blah!blah! So for me it was simple ignorance and a lack of knowledge.Slowly you people are helping me and believe me I have learnt a lot already.

Hopefully mtb210 will get there.

Thank you to all of you.

Constance13
Constance13 in reply to piglette

This is asked sooo often on this site. Why don't people read earlier posts?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Constance13

If it’s someone new maybe they don’t know how to search for answers...

and having been on here a long time (like you and many others) I would never discourage anyone from asking a question. It invariably helps others, not just the person posting it.

Judyliz
Judyliz in reply to Constance13

I think it is because most of us are unsure, confused, possibly in shock and many still in some discomfort or pain.

Navigating a new site when concentration is poor is maybe a step too far and overwhelming.

I think most people need answers to their initial concerns and time to absorb and even longer to accept.

That was certainly my own experience.

I look on the site as my warm fuzzy blanket.

Constance13
Constance13 in reply to Judyliz

Sorry! I have been on the site so long I forget I had all these questions years ago. Shame on me!!

You made me think the same x

carolBF
carolBF in reply to Constance13

Hi Constance13

I have a iPhone 11 and don’t know where or how to look at old posts, can you help please

Constance13
Constance13 in reply to carolBF

Sorry - I don't have a modern phone. Someone with experience will no doubt be along shortly.😊

At 81 years old I find I forget more than I remember!😒

PMRpro
PMRproAmbassador in reply to carolBF

DorsetLady is probably your best bet, or MrsNails. I use a laptop for everything and they are different.

However, all posts are listed here:

healthunlocked.com/pmrgcauk...

and you can sort them in various ways

MrsNails
MrsNails in reply to carolBF

Hi Carol

Ah an iPhone 11 😉 l have the App & the Desk Top Option on my phone, at the top of the page there is a Magnifying Glass 🔎 touch that & write in your topic & lots of different options will come up.

On the iPhone l find it to be a bit to ‘general’ & prefer to Search on the iPad as it lets you go further & specify within our particular group.

If that doesn’t help PM me as l’m resting but not generally reading very much but happy to help anytime.

MrsN

carolBF
carolBF in reply to MrsNails

Thank you perfect x

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to carolBF

There is a search facility - but unfortunately unless the word or phrase you type in is actually in the title of post it’s not very useful. It not very proactive and also has a tendency to bring up posts from all forums - so you then need to filter replies. Not what you want or need early days when brain’s not functioning properly - it’s difficult enough for us oldies who know our way around.

So I would say, maybe have a quick look, and then if it doubt raise a post...yes it might repeat previous ones, but better that than struggle to get advice,

PMRpro
PMRproAmbassador in reply to DorsetLady

I searched a post with the accurate title of the post - HU denied all knowledge!!! I spent ages looking for it the hard way to check it was correct too!

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to PMRpro

Pretty rubbish isn’t it - I tried this morning with the title of this post - and got all sorts of unrelated stuff!

PMRpro
PMRproAmbassador in reply to DorsetLady

Luckily google works rather better!!!!

PMRpro
PMRproAmbassador in reply to Constance13

Because there are so many - well over 21,000 in total and I think 3,000 or so of them are in the last 8 months. The search function on here doesn't work well for me and I know what I'm looking for - using google is far more productive. Believe me, on 2 forums we have tried all sorts of things to deal with the really repetitive questions but it just doesn't work. So the other forum had a section with collected posts on specific topics - it worked because of the layout of that forum but nothing like that here.

Constance13
Constance13 in reply to PMRpro

I stand "informed"!😂 I'm behind the times. I can't believe 3,000?!? You really didn't know what you'd started (with the four others) all those years ago. Where would we all be today without this forum??

PMRpro
PMRproAmbassador in reply to Constance13

Not me - I'm just a late-comer hanger-on ;) And even later here - I was already involved with 2 other forums and refused to take on another for quite a while.

Constance13
Constance13 in reply to PMRpro

I keep forgetting we were on a different forum originally.

Gaycreasey
Gaycreasey in reply to PMRpro

It does seem sometimes that the same questions are being asked over and over but they are from different individuals at different stages of this illness. Each person responds in their own way, especially at the beginning. It is a very frightening illness with so many life limiting facets and at first can seem overwhelming. I’m nearly 4 years in and down to 3.5mgs. I would like to start to taper to 3mgs but haven’t the energy to deal with a flare. I was so relieved to find this forum some years ago with well informed people who could put my mind at rest and the number of times I’ve said, ‘That’s me - I get that too’. It’s like having your own private GP who understands your needs and advises you accordingly. Thankyou to everyone who writes on here and to the pros who do a sterling job. Keep going, your skills are needed!

Noosat
Noosat in reply to Gaycreasey

Yesterday I started on 3mg, down from 3.5mg. I am very hesitant about doing it. I have to tell myself that I can always go up. I'm trying not to stress about it.

Don't reduce if you don't feel up to it, it's pointless, you should always feel well before a taper

After 2+ years of taking Prednisone for PMR, I am still very grateful it is available and allows me to go about relatively normal life instead of the painfully crippling and frightening condition I had for months before diagnosis. My only misgiving is the initial dosage of 25 mg which caused insomnia and night sweats and wasn't open to negotiation because my GP was away and the locum was too afraid to change his orders. Knowing what I do now, I would prefer to start with the lowest dose that controlled the symptoms (possibly 15 mg for a small woman)- hoping for fewer side effects and making it easier to taper. I'll never forget the first morning after medication being able to get out of bed pain-free and easily stretch all my muscles, plus the euphoria that lasted for weeks, so no regrets. My recommendation is to try it and see whether you want to go back.

Viv54
Viv54 in reply to gwenyth

I agree with you Gwenyth ! after being in chronic pain for so long it was amazing how i felt first time around on Pred . The euphoria i felt was fantastic ! It was in November wont ever forget i whizzed round doing me Christmas shopping ! Sadly over a year later had a really bad flare, plus a few other things, had to start at 40mgs and now am on the long tapering road, so taking it very slowly this time.It has caused me many horrible side affects but it has helped me function again, so its a no brainer .We all have to do what we think is right at the time.

I started on 15mg of Pred last September and really could not have coped without it. Turning over in bed, getting to the toilet were all major endeavours and ibuprofen just did not work for me and, as others have said, comes with it’s own pitfalls. There are lots of things you can do to minimise the side effects of Pred and lots of supplementary things you can try. Kate Gilbert’s book is brilliant. I tried the aloe Vera drink but it is truly disgusting ! Have also tried Bowen therapy and now on a course of acupuncture- just trying to help my body get back to normal and adjust - now on 2mg and feeling ok. Some tapers are worse than others but walking and yoga with a wonderfully supportive yoga teacher really help. Best wishes

I’m a person who absolutely hates taking any kind of medication I like many others on here took pain killers before being diagnosed with PMR as soon as I was on Preds pain went Then the process of tapering that’s a challenge I did successfully taper and thought I don’t need these preds now I can do it alone. How wrong was I ! I had a flare which caused me a lot of pain unnecessary pain as it was myself who foolishly decided to stop altogether! Then with the helpful advice on here DorsetLady mainly I started back on my lowest dose of Pred 5mg for a week soon new it was PMR as everything went again So I will remain on Pred as I know it’s the only thing that works with PMR and also this support network of people who know what they’re talking about as they are dealing with this condition daily Don’t do more damage to your body by not taking Preds x

I was abroad for two months when my symptoms started & got gradually worse, so by the time I got to my GP, I had developed GCA as well as PMR. Don’t let that happen to you please. I started on 60mg Prednisolone & am now down to 5, 21 months later....but it works, despite the side effects!

The hardest thing to accept is that PMR is incurable!! You will hopefully go into remission sooner rather than later, this could last many ,many, years and taking Prednisone is a no brainier if you want any sort of quality of life.

Please don’t assume that you are different from the rest of us, none of us willingly take Pred. but it’s the only thing that works.

Hi MTB

Ah, the Alternative Route.....

I’m sorry but as the others have explained there just isn’t one.

Can l ask why you don’t want to try the Prednisolone? How high are your inflammation levels?

My recommendation to you is to try it for one week as it can simply be stopped with no ill effects other than a reduction in your current inflammation levels & pain.

MrsN

We would all like to manage without medication, I doubt if many, or any of us actually can. I started on 15mg pred in June, got down to 9 then had a flare up, I cut out glucen completely which probably did not affect the PMR at all but helped other bowel and bodily functions.I started drinking turmeric tea with half a teaspoon of turmeric powder and black pepper twice a day, disgusting maybe, but within days I had a dramatic improvement. Turmeric has been widely discussed on this forum, it is not for everybody but it seems to work for me.

Dear mtb210,

It’s rotten when the treatment for a condition brings its own concerns.

I’m sure there are ways of keeping an eye on the possible side effects that concern you.

If signs of problems do arise your doctors will help you to deal with them. You won’t lose control.

Meanwhile, this medicine will give you your life back, as it did for me 6 weeks ago.

You’ll be able to do the things you enjoy and eat pretty much the foods you choose.

As everyone here says, it’s your decision, but my recommendation would be to give the Prednisolone a go.

Use your undoubted bravery and determination to manage the slow tapering to the minimal level you need.

We’ll be here for you either way.

IMC

I would take the Pred and then if you want to support your progress in other ways, which it sounds like you're keen to do, I can highly recommend AIP - autoimmune protocol. It's a lifestyle that includes diet, sleep, movement, stress management and connection - all the areas fundamental to our wellbeing and is designed specifically by and for people with inflammatory autoimmune diseases. We're all different and you can jiggle it to suit your own personal situation and issues. A google search will find lots of information about it.

I've followed it very closely for two years and have been stable at 2mg Pred with excellent test results for the whole of this year.

My GP and rheumatologist both confirm they haven't seen anyone else with PMR make such good all-round progress, so I know from experience and results that it makes a difference.

Wishing you well whatever you choose to do.

Ever since the first miraculous dose 8+ years ago Pred has given me my life back, it's amazing and I'm so glad it was invented

During the 4 months before diagnosis I took anti inflammatory pills every day. They worked for about 8 hours and then the pain returned. I suffered side effects like itchy spots and sores that wouldn't heal quickly. I tried ibuprofen, diclafenic, naproxene but all had the same side effects. I lay on the bed for all this time totally uninterested in anything much. My husband had to pull me out of bed, help dress me, etc. Eventually I found a rheumatologist who understands auto immune illnesses and he put me onto low dose prednisone (15mg). Within 2 days I got my life back. Within 3 weeks the dose was reduced to 10mg. In 2 weeks time I should be at 7.5mg if my inflammation markers are still low normal (they went up to 98). I was dead set against taking prednisone as I watched my mother suffer the highs and lows of tapering, but most doctors are more knowledgeable now, and there is also a lot of information out there.

Just as an aside, you might want to slow down that taper. 2 weeks between reductions isn't long enough to determine whether this is a sufficient dose to deal with you current level of inflammation, which will kick you with a flare that sends you back up the dosage ladder. I'd sit still for another 3-4 weeks, then, if all is good, reduce by no more that 0.5mg every 4 weeks or so. And don't proceed to the next reduction unless you are feeling at least as well as you did on your last dose. Once you get to 5mg, or even sooner, take a gander at the Dead Slow Nearly Stop tapering plans (DSNS) that can be found in the pinned posts panel on the right side of your screen.

This isn't a sprint. It's a decathalon.

Thanks for your feedback. My mother had both polymyalgia and fibromyalgia so I've seen the struggle she had with tapering. I also know, through a lot of research, that every one reacts differently to this illness and no two people are alike when it comes to tapering. If you are on prednisone for a short period then you can taper a little more quickly. I was on steroids for optic neuritis way back in the 80's, went on a high dose of steroids for a short period of time to stop it progressing, tapered down quickly with no side effects apart from the moon face. Of course, if in two weeks time, when I have a blood test before I'm lowered to 7.5mg, my inflammation markers are up again then I'll either stay put or go back to 15mg. Hopefully not, but I know it's going to be along haul.....

Yes, we're all different the level of inflammation we experience, the rate at which we can taper based on the level of inflammation, co-morbidities, side effects. Different conditions dictate different courses of treatment. However, bear in mind that PMR lasts for years, not weeks or months, and uncontrolled inflammation carries the risk of progressing the GCA - sometimes overnight.

Oh, and like the stock market, blood tests are a lagging indicator, and some people go through the entire PMR experience with no unusual blood test readings at all.

Thanks for your reply and do appreciate your comments. I've had the GCA biopsy which was negative and I know that even this can change to positive as time goes on. My rheumatologist, an autoimmune specialist from one of the Athens teaching hospitals tells me that I will be on prednisone for 2/3 years so I'm not expecting any quick results but he's got me this far so I will follow his course of treatment which may be quite different from the norm.

Wishing you an easy journey.

Thank you

Mtb210, we are all different, each case is different, the pain is the result of the inflammation, control the inflammation no pain. NSAIDS gave me no pain relief. We totally changed our diets, which helped. Good luck on the rest of your PMR journey.

Hi Mtb210,

my apologies for a long reply, but thought I’d offer a non-steroid perspective as you weigh up your own decision regarding the best way forward.

Diagnosed with PMR early 2019 I have not taken steroids - an ongoing on-balance decision and I will definitely take them immediately and at the high dose required if I ever develop GCA. I took maximum 3 x 400mg ibuprofen over 24 hours when first diagnosed, now reduced to 2 x 200mg daily (sometimes increased to 2 x 400’s during a flare up). This keeps the inflammation reasonably under control. I offset side effects by low-carb, low-alcohol, low-fat vegetarian diet, lots of natural yoghurt, plus a range of food supplements and stomach protectors – all are part of an individual tailored programme based on the advice of a qualified nutritionist. I also swear by regular acupuncture.

As background, my mum had PMR for 32 years, tapering didn’t work for her, eventually she stuck at 9mg. I saw the effect of steroids on my mum’s mood (depression), mental function, loss of confidence related to massive weight gain, insomnia... Steroids were never a magic fix for her inflammation levels, she was always at best ‘a bit stiff’, sometimes a lot worse and was in constant pain in her final years. I know this is an extreme example and I’m delighted pred works so much better for lots of other people, but there is a genetic link to this illness, and surely for all of us our personal experiences do and should inform our life decisions?

To respond to comments made so far:

PMRPro and others say that ”untreated PMR is thought to be more likely to progress to GCA” and the risk of losing your sight: This assumes taking anti-inflammatories means the inflammation is ‘unmanaged’ and ‘untreated’, which I question. I’d also like to see the research that steroids at lower levels minimise the risk of GCA compared to NSAIDs please as I’ve not heard this before - I’m open to taking steroids if that’s how the evidence balances out for me so this sounds like useful research to access, thank you (apologies if the link has been posted before).

That the inflammation will “continue to build up… if you don’t take steroids”/ “anti-inflammatories like ibuprofen and their stronger versions don’t work”...: My inflammation is well controlled by ibuprofen currently (my rheumatologist tried me on an alternative NSAID which caused serious side effects, & is due to try me on a different one in a few weeks’ time). On good days I can walk several miles / jog some of the way/ do the housework etc. I know that for some, pred is an amazing total cure for their pain, and that’s great. However, lots on this site regularly describe flare ups and pred-related side effects. It’s hard to get a real understanding of other people’s day-to-day health from the occasional post, but I don’t get a sense that our quality of life is massively different.

In contrast to Autumnlass, I had a terrible allergic reaction to Omeprazole but none so far to ibuprofen, which surely goes to show that our responses to different meds are very individual. I monitor the impact of ibuprofen with my rheumatologist. I know it comes with big risks of assorted serious side effects, but so does pred! It is hard for all of us that our rheumatologists and GP’s give such very different messages, but I’m glad to say my rheumatologist supports my choice and says she believes treatment should be decided case by case, not steroids by default. My GP eventually took time to listen to my history and concerns, and now accepts there are alternatives with the oversight of a rheumatologist – he’s told me that pred is a ‘dirty drug’, but as it is currently the only thing he has to offer his PMR patients, that’s what he offers us.

Regarding comments such as “Don’t imagine ibuprofen is a sweetie”/”Hopefully mtb210 will get there”/”Please don’t assume that you are different from the rest of us”… etc.: I find these kinds of comments when someone asks ‘what about alternatives?’ quite offensive and genuinely upsetting. Surely, we are all trying to respond to PMR/GCA as best we can and should respect that we're all making adult choices day-to-day based on our bodies’ responses, our life experiences, and the information we have available?

I do not question the kindness and experience of everyone here, but I think it is a reasonable observation that this forum is a support network for people who take steroids and not for those who do not. I understand from Dr Sarah Muller’s webinar 11th June, as part of this year’s PMRGCAuk week, that 2.5% of those diagnosed have opted for a different treatment route and that this number is never considered sufficient to be included in studies, so research information is minimal unfortunately. I have a link to one small piece of research here - file:///C:/Users/Owner/Downloads/Polymyalgia%20rheumatica-%20observations%20of%20disease%20evolution%20without%20corticosteroid%20treatment%20(1).pdf

Also - 2.5% of the 11,724 people signed up to this forum is 293 people i.e. those of us who choose other routes are not alone, although for most of the time we may well feel like that is the case!

I wish you all the best in your management of PMR and your choices for treatment whatever they may be.

You've had so many great replies but I do want to add to them if I may.

I cried when they told me i had PMR after 4 months of pain, I cried again when I realised the treatment was pred then I cried again 7 hours later when I could put my own pants on. So I totally get your reluctance - I'm sure every one of us felt the same.

Then I went through an awful fast taper for a scan (cried and cried) and realised that the pain just gets worse. It did for me anyway. And then there's the risk of GCA.

Please consider taking the pred but with some lifestyle and diet changes from the outset. This way you get all the benefits, better sleep, pain relief, mobility etc and you are managing potential side effects.

I wish you all the best

My rheumatologist will only allow me to take 5mg a day because I have developed severe osteoporosis. My inflammation is so high that it is caused anemia. I did not know that inflammation can cause anemia but it can. And this is not iron deficiency anemia it is different. I've just recently started trying methotrexate but it takes two to three months to see if it works so I'm waiting but I'm miserable.

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