PMRGCAuk
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there is a way out of this painful, stiff PMR!

Dear friends, I was DX with PMR in February this year. I refused taking the prednisone. I take Advil 2 in morning, 2 in evening. Along with this, I changed the diet, I follow the Anthony William protocol, did research on anti-inflammatory food, I juice and my last sed rate went down by 30 points. I continue that way, I discovered delicious healthy way of living. And I have to add that I go to the swimming pool 3-4 times/week and gently exercices. Yes, there is still pain, stiffness, weather like rain, cold does affect but I keep positive and I know that I will be pain free and mobile as before soon!! Blessings to all!

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Don't generalise - quite apart from finding early on that neither pain killers nor anti-inflammatories touched the pain of PMR, along with many others I found that a swimming pool was impossible. Every muscle I had went into spasm at the touch of the cold water.

Happy you have found something to help you, but for the rest of us steroids are a necessity, not a choice.

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the pool I go to is heated at 92F. it is a therapeutic pool, I do not swim, I do gentle exercices. Believe me, I am in pain 24/7 I take a lot of anti-inflammatory the natural way: turmeric, pineapple etc....best to you!

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Anthony Williams is a medical medium ! Selling his books , not for me . If 4 Advil a day is all that's needed , do not think it's PMR

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Yes- I was thinking the same thing. My local doc prescribed Voltaren a prescription anti inflammatory - which dId not help at all- prednisone was the only thing that touched the pain and immobility.

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Interesting to hear you have found a way to 'manage' your PMR pains without Pred. But please be aware, that you are only a very short way into PMR, and left untreated it MAY, not necessarily will, but may get a lot worse.

Plus left untreated you do not know what other damage is being done to your body.

If you can get through PMR without Pred then good on you. Many have started the journey like you, but have found they had to succumb to Pred eventually to maintain a liveable life. And as others have said, some of us had no choice but go the Pred route.

Please keep us informed of how your illness, and you, progress.

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Thank you DorsetLady!

I possible wrote in a way that many of you believe that I am having light pain! Believe me, it is 24/7 Someday, my legs feels like a have 2 concrete blocks instead of legs, I cannot bend my knees in bed until I warm up. I sleep now with an electric blanket. I still refuse to take Prednisone, I prefer to increase. the help for my body own defense mechanism. I also go to a swimming pool heated at 92F. Juicing, etc, all combined has helped me. Best to you!

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Hi health51,

Having read all your replies I can see you are very determined to carry on your regime.

As I said, that's your choice and if you can get through without Pred then fair enough. I'm sure in the past many have done that when it's not been diagnosed.

Like many on here, mine was undiagnosed for 18months, during that time I had severe fatigue and pains 24/7 and unfortunately it morphed into GCA (that's my worry for you). It was only diagnosed when I attended A&E (ER) having already irretrievably lost sight in one eye.

It took another 2 weeks for it to be confirmed that my other eye was okay. That was a very scary time - not something I would like anyone else to go through.

So please be very aware of any sight irregularities and seek advice immediately.

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Dear DorsetLady,

I've been reading your posts. I have been diagnosed with PMR by my GP although my bloods only show a slight rise in inflamatories. I was put on 15 mg of pred which worked fine during the day afer it kicked in which was several hours after taking the pred but was in severe pain during the night and in the morning. I split the pred to 10 morning and 5 at night and apart from some pain in the mornings it was bearable. I am now about 6 weeks into the PMR and have tried to taper off the pred to 7.5 mg morning and 3.5 mg at night and this has worked ok although the last few days tried 7mg morning and 2.5 at night and I'm now in agony in the mornings. I'm concerned that cutting the 5 mg pills in half I'm not getting a true 2.5 mg in each half so I will ditch that approach and use more of the 1 mg to get the dose I need. More of concern though is noticeable degradation to sight in one eye. I've been referred to the optometry dept at the hospital but that could take months for an appointment. I have also been referred to the Rheumatology dept by my GP as he is concerned due to not an exceptional rise in blood test inflamatories. Again that will take at least 12 weeks to get the first appointment. My biggest worry is my eyes and could it be GCA?

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If it could be GCA your GP should refer you as an EMERGENCY - which it is, just like a stroke or heart attack. They wouldn't wait weeks for an appointment for them. Some hospitals have a fast-track clinic for GCA, just like the fast-track Stroke Clinic but if there isn't one locally, all the GP must do is call the hospital or send you to A&E with a letter requesting assessment for GCa.

You are also trying to reduce in far too big steps. Below 10mg 1mg steps are more than enough but for many people, especially using split doses, you need to go for 1mg overall using the am or pm dose as suits you best right from the start. After 6 weeks you need to be on at least a total of 12.5mg for another month.

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Thank you for this advice. I first need to get the GP to agree that it could be GCA. Since seeing the GP last I went to the opticIan for an eye test. It was the optomotrist who found I had raised pressure in the eye that is degrading so it was him that has referred me to the eye hospital although his thought was it was due to a reduced drain aperture in the back of the eye. I've not reported the optomotrist's findings to the GP. I will make an appointment with the GP tomorrow.

Thanks also about the pred levels it makes sense and ill adjust up a little. It's just that I have been keen to get dosage down as quickly as possible because of the long term effect of taking Steroids.

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The raised pressures could also be due to the pred - it is a listed side effect. It is managed exactly the same way as any other raised occular pressure: monitoring up to a limit and then eye drops to reduce the pressure. If it is pred, they will fall as the pred dose reduces.

At PMR doses there are actually no real longterm side effects besides cataracts and they are easily dealt with:

medpagetoday.com/rheumatolo...

practicalpainmanagement.com...

The links are to two separate reports of the same study with slightly different angles. Many things that pred gets blamed for would have happened to most of the people anyway sooner or later. Certainly I can say a few things pred gets accused of were due to PMR for me!

To me the most important finding is that PMR lasts for more like 6 years than the 2 they keep quoting. Don't rush to force reductions - all that will happen is that you have a flare of symptoms which all too often means a return to a higher dose - and losing all the perceived advantage of reducing as fast as possible.

And another of your points - up to 20% of patients with both GCA and PMR have normal range blood markers. The rheumies claim that makes you atypical and they should see you - but if you put everyone they say is atypical in one pot it covers well more than half of patients. Hmmmm.

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Thank you very much. You clearly have a good deal of experience. I've gone from being fully fit and healthy apart from an enlarged Prostate that the Urologist has insisted is cancer free to a physical wreck in the space of a few months. My GP first thought that the problems of muscular pain were due to a urine infection and was treating me with antibiotics but these had no effect on the PMR symtoms. He later changed tack to PMR but was not entirely convinced due to the blood test not showing a high level of inflammatory. As pred had immediate effect and improvement he is more convinced that PMR is the likely cause. I'll take your advice on a slower rate of reduction of pred but will still see if I can get an appointment with the GP tomorrow to explain the latest and see if he can accelerate the specialists appointments. My problem is that I live in Wales and we don't come out too well on stats for hospital efficiency.

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No - Wales performs pretty poorly in the PMRGCA stakes! You also don't have the same freedom to choose who you see as someone in England - and it is bad enough there!

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Great!! Trust me to move here

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I can recommend northern Italy... ;-)

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Hi B4lamb,

see that PMRpro has answered the questions raised. I’m in a different time zone at moment so catching up.

Would agree with what’s been said, reducing too quickly, and that understandable, but not very wise! You may have found that if you were on the “right” dose you didn’t need to split your dose, but if that suits you, fair enough. But whichever way you go, you still need the dose you need.

As for your eyes, could be Pred side effect as PMRpro rightly says, but think you ought to highlight this to your GP stating your concerns that it might be GCA and get him to hasten your specialist appointment accordingly.

Good luck, and please let us know outcome.

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Yes I will certainly update when I have seen the GP again.

Regarding the tapering off from pred, I was not given much in the way of guidance from my GP, he just said try to reduce weekly, so stupid me has gone galloping off with a far too agressive reduction programme. I'm glad I found this forum though as I'm getting views from those with more practical knowledge and with real life experiences.

I run my own small engineering business and since contracting PMR or whatever it turns out to be I've built up a huge backlog of work as I'm only operating on one or two cylinders most days. I'm close to retirement but didn't really want to give it all up just yet. Moreover I want to get back to all of my sports like mountain biking , dinghy sailing and hiking, all of which have been put on hold.

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Hi again,

Unfortunately lots of GPS have little idea of PMR/GCA - not necessarily their fault if they don’t see it very often. Plus they all seem to be scared of Pred, and no sooner are you on it then they want you off it!

What they don’t grasp is that the Pred doesn’t cure the illness - it just controls the inflammation caused by it, and that inflammation is produced every day you still have the illness. So you need to find the LOWEST dose that does that- and to do that you need to taper slowly. Go too fast and you’ve gone past that level - and whumph you are in a flare situation.

You will get back to normal, but it takes time..,in the meanwhile you have to manage on 2 cylinders - frustrating as it is!

Take care.

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Offer your GP the following as light reading:

rcpe.ac.uk/sites/default/fi...

is a paper aimed at GPs to help them better manage their GCA/PMR patients. Quick and Kirwan both practice what they preach - I know patients.

As for the fear he probably has of pred:

medpagetoday.com/rheumatolo...

practicalpainmanagement.com...

are articles about the same paper but with slightly different emphases.

GPs are used to using pred as a short term measure to reduce inflammation - as in asthma/chest infections or flares of autoimmune disorders where they would reduce weekly once the pred has done its job and the normal medication is now sufficient again. In GCA/PMR the pred IS the normal medication, there is no choice. The cause of the inflammation is ongoing, topping the levels up daily - so the need for pred is also ongoing. It is a whole new approach for most of them.

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Thank you. It's not easy to offer a doctor things to read when they are supposed to be experts in their field. It's like you are telling them how to suck eggs. But ill do it without trying to patronise him.

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I do it by asking their opinion of something - this gives them the opportunity to play the expert if their egos are that fragile or to say they need time to look at it more closely if they are prepared to be educated.

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GPs are, by definition, NOT experts in rheumatology or any other speciality. If they were we wouldn't need to be referred. And they don't read the latest info in all fields because they can't, there isn't time. I can't hand stuff over to my GP - her English isn't good enough - but she happily learns about new findings when I tell her.

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When I say experts, I mean they are more expert than me with an engineering degree and should in my mind at least do some research when they have a patient with a particularly unusual problem. To be fair he has referred me to a Rheumatologist so it's just the time lag now to get the appointment.

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I managed to get to see my GP today. I didn't offer the papers I'm afraid as I wanted to discuss two flair ups and my eye pressure fogging concern as well as two flair ups I have had this week. I had a blood test two days ago and my GP had the results back today for my appointment. One good thing is my PSA level is now back to normal for my age (this is a side issue) he did say my inflammatory markers were up when all previous tests were not showing much of an increase. I did point out that when I had the blood test 2 days ago I was in the middle of a big flair and it was agony getting to the surgery to have the test. I mentioned my eye test result at the opticians and asked if the fogging and eye pressure could be due to GCA. He showed concern and said he would call the Hospital Rheumatologist to get advice particularly as I don't get much in the way of temporal pain on the sides of my head. In the meantime I explained I was getting frequent flair ups and that the 10 mg/day pred was not removing all pain in my legs and shoulders. He suggested I go back up to 15 mg/day for a while and reduce slowly by 1 mg per month. This is a much slower rate than he first suggested seeing that I was diagnosed in late Dec 2017 and on 20 mg to start but reduced to 15 in 3 weeks and then down to 10mg by mid Jan. Mostly everyone on this forum are suggesting a much slower tapering off. Anyway from today I will step change back up to 15 and see how that works out.

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I don't think it was a matter of you making light of your pain at least that's not how I read it. I think it was more of your higher than Mighty attitude about it. I think it was more of a I doing it better than you kind of an attitude. And I can tell you right now that I had started this disease while I was already on opiates for lower back pain and my opiates didn't touch the PMR pain. So I find it really hard to believe that you're NSAIDs made any kind of difference on PMR pain and my opiates made no difference at all. So I think we would all appreciate it if you would consider your situation different than our situation. As each person's PMR disease presents itself individually different as each person is different.

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Hi,

As you say, everybody's illness is different, and so is everybody's approach to it!

Hopefully on this forum we can all appreciate other people's view and opinions, whether we agree or not.

I see it as giving advice when requested, but how that is received, and acted upon by the questioner is entirely up to them.

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Like the other 2 - if that was all that was required I'd have been cured too. If ordinary painkillers worked - it wasn't the PMR discussed here in the first place.

And I "managed" for 5 years like that - I had access to a warm pool and aquafit classes I could afford. I couldn't swim, still couldn't. But I wouldn't class it as having "cured" it - and have had 2 massive flares since.

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Why on earth would you not take tablets if you still have pain and stiffness? All I can say is that it really can't be that bad. Keep dreaming

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health51 I am so glad you have been able to help the pain, however if an NSAID such as Advil helps it is unlikely you have PMR, unless it is a very very mild version. Also if you are able to go swimming three or four times a week makes it seem it is very mild. I had to stop swimming before I was diagnosed or I would never have got out of the swimming pool! Even now on pred I can only go two times a week as it takes a day or so to get over the exercise. When diagnosed I became a nutrition nerd but I could not have survived without pred. I could not even get dressed and even had trouble eating as the pain in my arms was so great.

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I meant to add I think I am slightly sceptical of Anthony Williams' credentials. He has no medical training and claims to be in contact with spirits to help his diagnosis. I think I would prefer to find someone with a bit more basic knowledge of health.

On the other hand he is incredibly good at promoting himself and getting people to buy his books for which he deserves congratulations.

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I have more faith in him than any doctors I met. I am a retired nurse!!!!!

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I hope you will keep us posted on your progress!

I must say though that you should be careful with the Advil.

A close friend lost 30% of his kidney function from taking Advil...there were no symptoms of the damage that was being done. All medications can have side effects...pick your poison! Also, I have met one person who has had what seems to me to be a milder form of PMR....she just was never as debilitated as I was, especially in the beginning...and I know that many of you have had a harder time, not only with the PMR/GCA! But also with the prednisone. Not a disease for sissies😊

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Hi there Piglette,

I do have PMR. I am in pain 24/7 . I have difficulty walking, getting in/out of low cars, getting off the toilet, turning in bed, unable to have a full night sleep, I walk like a Pinguin . I lost weight, I get spasms in the back muscles, sitting is not helping etc... This started mid January 2017. I decided to change my diet, the sed rate was 80. By changing the diet, juicing veggies and fruits, greens etc....and for a month now, I am going to a swimming pool heated at 92F. It is a therapeutic pool. This also changed the mobility. It helped. I walked baby step to get from the parking lot inside but do it. So far, I see only positive results since , the sed rate was repeated and was down to 56 last week. I keep fighting day by day. I do have good support, encouragement and research the internet and I feel that I will get out of this !!!! I wish the best to each and everyone!

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I do hope things go well for you. Your sed rate is still quite high, but hopefully that will reduce too. Do remember that by not taking steroids to reduce the inflammation PMR can cause damage to your body and also you may be more susceptible to GCA. If you do have eye problems check with your doctor immediately.

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.....I will drink to that!...Pinot Grigio or Chianti...mmm

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Lucky you health51 if you have a version of PMR that is livable with without steroids....that is if it is, in fact, PMR! I was totally immobilised and in agony with undiagnosed PMR spending several months in bed and attending rheumatology appointments by ambulance and wheelchair. Paracetamol and Ibuprofen did nothing, except for the latter attacking my sole kidney and leaving me with chronic kidney disease. The undiagnosed, therefore untreated, inflammation put me at higher risk of the linked condition, GCA, with its risk to eyesight. Unfortunately I eventually succumbed to that as well but luckily kept my eyesight - some are sadly not so lucky. The steroids are certainly not sweeties but thank Heavens for whoever invented them - they gave me back my life and saved my vision.

I am always extolling the virtues of anti-inflammatory food to help with the pain/stiffness of PMR or any other inflammatory condition come to that.....but note "to help with", not to cure. Also be careful with your juicing if you're juicing fruit as you are at risk of too much sugar in your diet. The fibre of fruit and veg is far healthier than the juiced versions.

I wish you well and please come back and let us know how you progress.

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Celtic,

this winter I was unable to remove the blankets from my body, getting out of bed was like trying to get out of concrete,, I still walk like a " Pinguin" due to the pain. The weather make things worse. I need an electric blanket. But , even with all this, I knew that Prednisone, decrease your immune system, It is like putting a band aid on a headache..I refused. that and turned to natural way... I am feeling so much better, yes, still having pain, but I see a change. I keep positive. and continue the juicing and avoiding food unhealthy, food causing inflammation!

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I started with a esr over 100. I very much wanted to avoid Pred, but watching those elevated numbers kept me worrying about all that inflammation in my body. The Pred had it down to normal in 3 weeks. I also have changed my diet and have cut out as much "inflammation" from my life as possible. I picked my poison I guess. Now I'm dealing with tapering off Pred.. and hoping that my rate of tapering coincides with the tapering of the PMR.

I hope your PMR responds continues to respond to your regimen. But please be watchful. This condition can blindside you.

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"Prednisone is like putting a band aid on a headache". You couldn't be more wrong. That "headache" could be a symptom of GCA and without Pred could have devastating consequences: loss of eyesight, stroke etc.

Each to their own choice but I know which choice I would make, and did make.

I can only repeat that I wish you well with the choice that you have made, but please be aware that if that untreated inflammation of PMR should reach your arteries, in your head for instance (as happened to me), resulting in head pain or any problems with your vision, you will need to seek emergency treatment to avoid the devastating possible consequences to which I have referred.

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You sound like you are in a happy place, long may it continue and blessings back to you.

This is a nasty disease, you are in the early stages of it, never be too proud to admit you need a bit more help in the future. I hope that day never comes. Keep us posted.

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sheffieldjane,

I wrote a long note to Piglette. I do not think that I am in the early stage but healing stage of it. I go to a swimming pool, I am not swimming, but doing gentle exercices to " unfreeze" my muscles....yes, pain is the name of the game, stiffness. The pool is 92F. I could not go otherwise, I need warm. I sleep with electric blanket. The sed rate went from 80 to 56.

This winter, I was taking 6 Advil/day, now 4 a day. Anyway, life is not easy but I cannot allow myself to think that I will be like this for long! It is already 4 months but I see hope, I walk better, mood is positive, appetite is normal. Anyway, each body is different, and the attitude also. Best to you.

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Dear Health51

I would say two months into an average six year journey doesn't really count as being out of the starting blocks but like everyone else on here I wish you well. Pleas feel free to ask for support or advice at any stage along your journey which will challenge you in more ways than you can imagine. As someone already mentioned please take immediate action if you experience temporal headache or sight disturbances. You will not be able to play with GCA if it starts to develop. It can cause blindness within days or even hours. I hope it continues to go well for you.

Best wishes

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Dear health51, I was thinking!! Perhaps if you did a trial of steroids for say two or three days you could stop immediately if you wanted, but at least then you could see if they gave you good improvement in the pain. I just feel so sorry for you going through pain 24/7 when you might find that you could really improve your quality of life.

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It definitely sounds like you are on the up and up. I must have mis- read that you were diagnosed in February. Maybe that was someone else. You've got a great attitude, that definitely helps.I find it a challenge to keep it up, a bit like " don't look down or you'll fall" situation.

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Hi Health51

I certainly commend you on your alternative methods of taking care of your PMR. After my wife tried so many pain medications that were prescribed to her prior to her DX a year ago, and nothing having worked except Prednisone, there was no choice for her. I need to support her anyway I can even though these steroids may ultimately haunt her.

Wish you the best!

Joe

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Hi Health51

Like many others here I think you are actually taking a serious risk - but clearly you think its 'worth' it. I also felt very conflicted reading about all the possible side effects of Pred - but realised many of these can be managed and not everybody gets all of these anyway. I have been taking Pred now for 3 months - and since my PMR was followed by some GCA symptoms I am now on an even higher dose than initially. But so far so good - and at least I am not worried that my eyesight could be damaged - as my own mother's was decades ago when she was never diagnosed and in the end became partially blind. What really tipped the balance for me was reading how insidious GCA can be - not everyone gets the major outstanding symptoms - so as others have also warned be very vigilant about anything unusual and best of luck ...

Rimmy

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Hi health51,

As one who was also very determined not to go on prednisone as the side effects seemed worse than PMR, I must say I'm pleased I did change my mind. Both the doctors I was consulting advised me to, and the advice I received from the experts on this site, and that is what they are, common sense dictated I should not ignore it. I started taking Pred 4 weeks ago, 15mg and the difference in my quality of life is like calk and cheese. I have had minimal side effects to date apart from a little nausea. You sound a lot worse than what I was, but I respect your decision which only you can make. Suffering, as we all know , is a real pain, Pred has the ability to change all that - I'm taking one step at a time and will manage the side effects as and when they appear. To me, the virtual instant response I got after taking Pred told me I had PMR for sure, I couldn't put a price on that confirmation! I wish you all the best, just keep an open mind and take on board the words of wisdom on this forum to help guide you on the road ahead. We all try hard not to judge and give support unreservedly. Regards John

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I am delighted you have found a way to manage your pmr without steroids. My own experience was that I couldn't stand upright to get downstairs in the morning never mind get to a swimming pool. I bumped down on my bottom crying at every step. I couldn't lift the kettle to make a hot drink or make any breakfast. Couldn't even turn over the pages of a newspaper. It was at least lunchtime before I could operate on any level. I know most on this site can identify with this level of pain. I am unsure of your diagnosis as it is known that anti inflammatory drugs do not touch pmr pain. The only treatment , as any doctor will tell you, is steroids to damp down the immune system.

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Hi Health51,

May I say how brave you are. I have just come across your post. I hope you are continuing to feel the benefits of your regimen.

Having just seen the Broken Brain Docu-series, it is very obvious that our dietry intake is fundamental. Probiotics will help to repair a damaged gut Biome. With an optimised gut Biome we can combat inflammation the body's response to chronic illness.

Omega 3 featured a great deal as did other things in this excellent Docu-series.

It will now have expired.

I took notes and will try to write them up for those that missed the series.

Courage. Keep it up.

Best wishes,

Poppy the 🐈

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