Who is Managing PMR without medication? - PMRGCAuk

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Who is Managing PMR without medication?

GertG
GertG

Newbie here. 63 year young male and have PMR sinds 5 months and went 4 months ago from more than 4 yrs Keto to Carnivore to counter attack PMR. When I was on Keto I overdid the so called superfoods, which happend to be extremly high in Oxalates. Now on carnivore but my PMR symtoms are still severe and wake up in the early morning with severe pain in my shouldets and hips. Clearing of oxaltes can take up to a year so still 8 months to go, according to my own diagnosis. I walk everday one hour, do light work in the garden, swim short distances and move my joints as much as possible which is all very helpfull during the day. Besides this I started a week ago the breathing technics of Wim Hof (the iceman) every day and the icebad every otherday..This gives tremendous relieve but sofar only for 1 or 2 hours. Hope overtime that the benefits will last longer. Anyone tried this as well? The pain is bad, and not getting enough sleep but most worrying is the inflamation damaging my body. Tried Ibufroven but this is pure rat poisson and prednision is just no option as I don't want to complicate my health any further. I ordered LDN as a last resort incase the Wim Hof methode is not helping enough. Hope to get it in 2 weeks. Anyone of you using LDN?

Also ordered Epson salt for bathing in hot water. Does this gives you relieve?

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ADMIN COMMENT: It is important for patients with PMR/GCA to be treated with corticosteroid (prednisolone) or as directed by your clinician. Never stop your steroid medication suddenly.

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82 Replies

I would bet my bottom dollar that no one here is attempting to manage their PMR without Prednisolone. It is the only thing that will manage the inflammation in the body. Without it pain will increase and could well lead to blocked arteries and possibly stroke and serious eye problems resulting in sight damage/loss. Safe alternative methods may be used alongside Prednisolone once the inflammation is under control but until then you are on a slippery slope. Have you had any advice from the medical profession?

GertG
GertG in reply to 123-go

Thxs for your reaction. Inflammation is indeed scaring me. And I know the risks. However finding the cause and reverse it is for me priority. In the last 2 decades I had 2 times serious issues and the doctors start throwing medication at me as soon I entered their office. They scared me if I didn’t take it it it would be very bad and dangerous and they also told me that it only get worst, even with medication. I started to read everything possible on internet and did a few things in my diet that made common sense and this totally against the diet advice of a nutritionist. And I cured myself and let all in disbelieve behind. Since than I didn’t go to doctors anymore, initiate my own lab tests without doctor and ditched my medical insurrance. Waist of time as those guys and ladies I met had no clue how our bodies work and love drug short cuts that makes the patient feel comfortable. It seems we are getting more and more disconnected with nature and forgot about our evolution. In the case I can’t get a solution myself I can always seek help again.

When I went Carnivore the first 2 weeks I was completely pain free and walked on the beach as if my soul was floating, as I didn’t feel my body. Therefore I suspect oxalates as the problem. 2 weeks on a oxalate free diet is a trigger for oxalate dumping witch can have severe symptoms for up to a year. I go for this scenario, stay on Carnivore and have to find away to minimize my body harm during this period. Willing to take the pain if necessary. Eating again oxalate foods can slow the symptoms, but I want to get rid of them ASAP so go cold turkey. Followed meanwhile medical online courses but pred seems to be such an easy and pain free solution that looking for the cause seems to be on the background. For sure PMR can be complicated to crack, but our bodies are wonderful designed and things won’t happen whiteout a reason.

With the ice baths I noticed that the pain areas get extremely painful when longtime in the icy water (more than 5 minutes). Hope the shock effect will have a positive impact on the involved blood vessels. After done it yet 3 times I will continue as afterwards it feels so good for 1 or 2 hours. Hope the feeling will last longer overtime.

123-go
123-go in reply to GertG

If you, as you say, know the risks and are willing to take them, it may be that nothing will change your mind about Prednisolone. That is your choice, of course.

However, the advice and experiences of many members here has been invaluable to others over the years. It is advice and not intended to be a replacement for the expertise of the medical profession who have studied PMR in depth and taken part in extensive research.

No one knows the cause of PMR but it is quite widely believed to be brought on by severe emotional stress or trauma and this is evidenced by many. There is no known cure but there are known successful pathways to remission.

I wish you well with your regimes. It will be interesting to know the results.

GertG
GertG in reply to 123-go

Had a very difficult time in my job from 2012 to 2016. This might have its after effect. I stoped working end 2016 allowing myself to get healthy again, which I tought I was until 5 months ago. Luckily I have all time to work on it. Many on this blog won't be in that luxery position. Will keep you posted if I did it without or when I surrender to Pred.

123-go
123-go in reply to GertG

Thank you, GertG. I'm sure a number of us will be interested in your updates.

PMRpro
PMRproAmbassador

This is a link to my story - not out of choice, I simply wasn't diagnosed. Nothing would induce me to go back - I lost 5 years of my 50s to PMR, I have no desire to live with constant pain and disability when pred gives me a pretty decent quality of life.

healthunlocked.com/pmrgcauk...

Whilst diet and alternative approaches may help you push out the time until you give in to pred, or even more so, combat the adverse effects of pred, they won't "cure" or even manage PMR entirely. I have heard only a few people over the years claim any of those approaches allow them to dispense with pred and no-one who has tried LDN has returned to say it works. Which I think you might expect if it does.

You have to remember that it is felt that unmanaged PMR is more likely to progress to GCA - when the choice will be take high dose pred or risk going irrreversibly and possibly totally blind. We have had several such cases in the last year. You are leaving unmanaged low level inflammation to course through your body - and that is known to predispose you to developing several types of cancer and various cardiovascular conditions. Pred isn't perfect, no-one will claim that, but it beats a lot of the alternative scenario.

There are one or two people on the forum not using pred - but it really is a very small number.

Lone_gardener
Lone_gardener in reply to PMRpro

Hi PMRpro , I amazed reading your story as so much is parallel to my own , I take great comfort in opening up my emails in the morning as someone’s query or new developments are as if my mind has been read and there’s a new explanation and piece of advise .

Thankyou everyone. I may have to rename my profile name as “ shuffling women” I am currently on 5mg of Prednisolone after a slow up and down taper for the last two years , I have an excellent Rheumatologist and am confident he’s looking after me. Had a slight blip this Xmas as was hauled off the casualty with severe chest pain ... pneumothorax , mended now but still under investigation, CT of chest showed nothing awful but apparently have lived cysts , currently waiting for MRI results for this.

Thank you one and all for your advice & sharing xxx

* liver cysts

DorsetLady
DorsetLadyPMRGCAuk volunteer

Hi

The 64 million dollar question that most new patients ask....wish I had a dollar or pound for how many times I’ve read that.

Doubt if many manage without Pred, and probably not on forum, as they think we aren’t receptive to their views......not strictly true, but not sure if success without steroids is proven to date. However, alternative therapies may help with the ‘add ons’ of PMR.

Many refuse steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms including diet, supplements, alternative therapies have to eventually admit defeat and go down the route of Pred. None of us WANT to take Pred, but invariably it’s the only option.

I’m sure in days of yore many went through PMR or GCA without Pred because they just weren’t diagnosed, but I doubt if life was very pleasant for them.

Plus you have to remember that if your inflammation is not controlled properly it can lead to many other issues including GCA - a much more serious illness. GCA left untreated can lead to aneurysms or, more commonly, sight loss.

We have a few patients recently who have lost complete sight, and I personally lost sight in one eye because GCA was undiagnosed.

Undiagnosed for 18 months, so no Pred, life was extremely painful, and when finally diagnosed ihospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye.

I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that experience.

I do not intend to scare, but I do say, think very carefully before you reject Pred. Yes there are plenty of unpleasant side effects, but most can be managed. I started at 80mg and it took me 4&half years to get to zero. I did have slightly raised eye pressures and blood sugars for a few months but no extra intervention required, both returned back to normal. I did have a cataract replaced, but who’s to say I wouldn’t have anyway. I’m no madder now than I was pre Pred (but that’s not saying a lot!). My adrenals were a bit sluggish to start with, but now after being off Pred since September 2016 they are completely fine.

Take care, and think about this carefully- no drug is all good...or all bad.

Everything you are doing shows a marvellous discipline and commitment to getting well. I envy your focus. I really believe that you would be amazed at the liberating feel of Prednisalone mopping up all the pain and harmful inflammation. We all understand the fear of steroid treatment and the well known side effects. With your determination you would be able to be alert for and mitigate all of the side effects alongside your complimentary therapies. I imagine that you would be good at tapering down off your start dose and managing any withdrawal symptoms. Men appear to experience an easier, shorter ride with PMR. Don’t allow this to become more life changing than it needs to.

The reason many of us live long and reasonable healthy lives these days, is due to drugs we're prescribed. Albeit for high blood pressure, high cholesterol or diabetes. We'd all love to be able to control our health issues with alternative remedies, sadly that doesn't often work. Many years ago I tried to control my asthma my having sessions of acupuncture, did it work, sadly not. Thankfully, with the use of inhalers (one being steroid based) it's now completely controlled. Don't be in pain, possibly only two years, or less by taking Prednisone you'll get back your live and pain free too.

Good luck with your decision.

PS the ladies on this forum have years of experience with this disease and they know what they're talking about. I'm so glad I joined back in 2019, as I've been helped many times with good advice.

Regards

Anne

GertG
GertG in reply to Staplehurst

Dear Anne,

Whitout medication I reversed diabetis (FB now between 80 and 90, Hba1c 5.2) and my bloodpressure from 190/110 to 120/65.

How? By ditching my doctor and go keto.

Side effects sure. I solved 22 other health issues at the same time. But not yet PMR,

You can do it also as the underlaying condition is an intolarance for carbs. Cut them out completely. See dietdoctor.com

PMRpro
PMRproAmbassador in reply to GertG

The keto diet WOULD sort out diabetes and BP problems. PMR isn't either - but as has been suggested, a carnivore diet is unlikely to improve inflammation.

Eliminating oxalates doesn't require stopping eating a healthy diet - if nothing else, your body makes its own oxalates if you don't eat them. Too many are probably bad for a lot of people but you don't have to go to extremes.

Staplehurst
Staplehurst in reply to GertG

Yes, I agree type 2 diabetes can be reversed with diet. So glad you were able to do this with yours. My husband is type one. We've both been on many courses via (NHS) over the years and educated ourselves re diabetes. Sadly though once one has type 1 that cannot be reversed as the pancreas has completely stopped working. He manages pretty well though, but having had type 1 since 1997 he is now suffering chronic kidney disease. Running too high risk damaging organs and going blind, too low, hypos, can eventually cause mental issues....another horrible disease !!

GertG
GertG in reply to Staplehurst

Sorry to hear. However the Keto diet or Carnivore diet seems to be helpfull with type 1 as well, but more delicate to manage than type 2.

Running on fat, ketones, should make him less dependend on carbs as fuel so less fluctuations in BS. My BS is during the day very stable. 2 hour after a meal my BS is not higher than before and without much insuline from my body needed. My body makes now carbs when needed as I am on a zero carb diet. In my case no doctor or even myself can dose the right amount of carbs that I need, but my body can do it itself as long I am in the fatburning mode.

Staplehurst
Staplehurst in reply to GertG

Well done you, so pleased for you. My husband eats very few carbs. I on the other hand was the carb queen, but reduced my intake due to PMR/GCA. Can't honestly say that's it's made much difference though, except to help with not getting type 2 diabetes...even that will be reversed once off Pred. BP pretty good, again once off Pred a will resume to what it used to be. Just getting the inflammation under control it what my intention is. Have you had a blood test to find out what your CRP/ESR is ? Back in 2019 just before diagnosis, and in so much pain, I was as high as 515....today it's 6, so more than happy with that.

GertG
GertG in reply to Staplehurst

Hi Anne

ESR was 25 and CRP 6.9, which are both on the low end for PMR (probably due to my low inflammatory diet). But also have a moderate anemia. All other relevant tests according the protocols for rheumatologist to exclude other diseases came back negative. Including RA, Symptoms are one on one for PMR and the pain in the morning is extreme.. During the day I can survive but it is always on the background. Only after my breathing exercises and a Ice bad I am totally pain free and can move my limbs without restriction for 1 to 2 hours. Great feeling to be normal. If this would last overtime I am out of the woods. Not so comfortable on the moment itself but will look forward to my next bath tomorrow. So far it looks that nobody else on this blog tried the Wim Hof methode. Will keep everyone updated about its effectiveness.

Staplehurst
Staplehurst in reply to GertG

I watched that man on television....quite remarkable !! You may have Fibromyalgia and not PMR. There are a lot on the Forum that know they have PMR even when their inflammation markers are normal, so can't always rely on those. If you're in pain you have inflammation going on. All I can say is you're very brave to go it alone using only alternative approaches. Must say I'd be too scared in case GCA kicked in....none of us want to lose our sight.

Again, All The Best

Anne

I don’t think I could have managed without pred - I went from being extremely active to being bed bound in just a few weeks and pred gave me my life back. Having said that I started on 15 mg of pred in September 2018 and took my last (hopefully) pred in December 2020 so it was a relatively straight forward journey for me although I am all too aware of possibility of relapse. There are lots of alternative therapies out there if you are interested that I think can really help with pmr / tapering off pred. Things that helped me were yoga, acupuncture, various supplements and daily naps. I know how you feel about medication - at one point I kept a drugs diary as I was on so many drugs , many of which were to counteract the side effects of other drugs but it is a lovely feeling when you can start reducing the numbers / quantities - very best wishes

If you take prednisolone at the right dosage, you will almost certainly experience immediate relief of the pain and you will reduce your risk of developing GCA with its associated risk of sight loss.

However, if you are determined to battle on without medication, I'd be interested to know your reasons for adopting a carnivore diet. To me this seems the worst possible choice for your own health and that of the planet, not to mention your bank balance. You mention problems with oxalate foods, but it must be easy to avoid these particular foods while still eating a healthy amount of vegetables and fruit.

GertG
GertG in reply to Marijo1951

Meat content is the most closed to the nutrients our body needs. But I make sure that I get at least 80% of my energy from fat and only 20 % from protein to be a fat burner. To keep omega 3 and 6 on a 1-1 ratio I eat only beef and fatty fish, no with grain polluted chicken or pork. It is the best elemination diet available and when I am ok again will introduce other not carb foods again.

At the moment I spend less on food than before. The australian beef I eat cost me around the 5 $ a day and save money on medical costs at the same time.

With my carb intolerance I have to avoid fruits, all grains and starchy vegies anyhow. In regard to environment it is not the meat. In general livestock keeping but also the management of arable land in general is not done suistanable. This must change. See on youtube Allan Savory and understand why we need cows to protect our enviroment

Marijo1951
Marijo1951 in reply to GertG

This isn't the right forum to argue with you regarding environmental issues, so we'll just have to agree to disagree about Allan Savory.

PMRpro
PMRproAmbassador in reply to GertG

You may argue the pros and cons as much as you like - but "Meat content is the most closed to the nutrients our body needs" is not entirely true. Unless you are eating a lot of raw liver, fish roe and eggs you won't be getting adequate vit C and lack of vit C causes scurvy which can be fatal if not recognised and treated. There is a range of nutrients that the human body needs that aren't found in a purely carnivore diet.

Of course - I accept you may be eating an Inuit diet and they are healthy enough. However, you can't extrapolate their diet to a population without the unique Inuit genes that mean they live well on their diet.

Marijo1951
Marijo1951 in reply to PMRpro

There are studies that show that the Inuits don't do so well on their traditional diet (see youtube.com/watch?v=6N7Sk1Z... if you're interested) However it must be admitted that they probably do even worse if they transition to the standard North American diet! For most of us a purely carnivorous diet would surely make us far more susceptible to heart disease and various forms of cancer.

PMRpro
PMRproAmbassador in reply to Marijo1951

Years ago I did read a long and interesting article about the adoption of the Inuit diet - and how it has to be done with the massive amount of fat and with the raw meat I mentioned. Can't remember who the scientist was who tried it but thought he'd make it more heart friendly by cutting the fat. Big mistake, he really didn't do well! But there is always the caveat I mentioned: it requires their genetic adaptation.

Mind you - your born again video guy only mentions life expectancy for Inuits - for similar dates they weren't too hot anywhere, Early 50s it was only about 60 in the USA. Doesn't mention the fact they smoked heavily.

I'm not going totally meat-eating, in fact, eating steadily less.

Marijo1951
Marijo1951 in reply to PMRpro

Well, as you might have guessed, I have ''gone vegan'' - on 9th December to be exact. I shall post about this at some time, probably when I know my blood sugar level, but so far I feel much better for it. As I've mentioned before, my now middle aged daughter became vegan at the age of 15 for animal welfare reasons, but at the same time it evidently nipped her rheumatoid arthritis in the bud.

PMRpro
PMRproAmbassador in reply to Marijo1951

Made a big difference to my daughter and granddaughter too - but I couldn't! Veggie maybe.

I did laugh recently at someone saying they were a meat eating vegan ...

Constance13
Constance13 in reply to PMRpro

???? Must remember that one.

Update on the above:

Just heard someone on the radio say "I'm a Christian Atheist".

PMRpro
PMRproAmbassador in reply to Constance13

You couldn't make it up could you?

GertG
GertG in reply to PMRpro

You are right. Low fat meat without carbs gives protein poisoning. In canada the call it the rabbit disease. When hunters could not get Buffalo the hunted rabbits and got in the problems as rabbits are to lean. Nice to know is that Indians survived the winter on pemikan. This is pulverized dried buffalo beef mixed with pure buffalo fat that can be stored for years. 70 % fat calories and 30 % from protein. I make it myself from beef for boating of the grid for a few weeks. Super condensed complete food and no fridge needed.

GertG
GertG in reply to Marijo1951

I became a carb intolerant person, due to a whole food planted based diet with minimal meat as advised by nutritionists. I never liked process foods anyhow. But I crashed on those high amount of carbs, so have to eleminate them as much as possible. Keto and Carnivore reverse all the nasty side effects of metabolic syndrom for me and thus lowers my risk on heartdisease and cancer. I am pretty sure that Keto and carnivore reduced my inflammation in general, but not enough yet to get rid of my PMR. But as I read this blog I am probably not a heavy case anyhow.

Marijo1951
Marijo1951 in reply to GertG

Well certainly by increasing my carb intake I'm going against the advice normally given to those taking steroids. I was resigned to the thought of putting on weight but, in fact, I've lost roughly one pound per week since becoming vegan. I think what you and I have in common is that we totally avoid over-processed foods, something I would recommend to anybody. However I'm very dubious about other aspects of a carnivorous diet - still if you really think it's doing you good, fair enough.

As I mentioned, my daughter's rheumatoid arthritis, a far more serious autoimmune disease, faded away almost completely after she became vegan. She has minor bouts now, but these are nothing to what we dreaded when she was first diagnosed. She was so ill that we really thought she would end up needing a wheelchair.

Whatever diet you follow or whatever other steps you choose to take, I still advise you to take your pred to deal with your PMR.

GertG
GertG in reply to PMRpro

I use Chronometer as app for balancing my Carnivore diet and get between the 98% to 100% cover of my nutrients every day. For this I add some supplements and once in the 2 to 3 days liver with eggs. Also add a multivitamine, bit ascorbic acid, magnesium citrate, fish oil and potassium (lo salt). I Modified the fiber needs in the app to zero, took out the upper limit for saturated fat and tripled the minimum salt level to be optimal for this diet. For those recommendations rigoureus science is missing anyhow, Most attention I have to give to folate, iodine, the right balance between omega 3 and 6 and the right ratio in electrolytes.

However many longterm carnivores don’t supplement at all and are in a super condition.

I assume the reason is that plants, as there defense, produce anti-nutritients. And those nutrient requirement tabels are based on the average person who eats plants and thus have les absorption. Carnivores might therefore do with less.

However I stick to the tables for the moment to be on the save side.

PMRpro
PMRproAmbassador in reply to GertG

I do love how people tell me they are eating a diet that covers all their needs and then list all the chemicals they are including to cover the nutrients they are actually missing.

Marijo1951
Marijo1951 in reply to GertG

Funny, I'm used to vegans recommending Cronometer!

HeronNS
HeronNS in reply to GertG

I can't find where the subject of Inuit diet actually started in this thread, so hope I'm addressing the correct person. It would be pointless to look at the Inuit diet today as examples of ideal diet, even those who still live to a large extent off the land. Their way of life and their health and diet have been completely disrupted over the centuries since contact with Europeans and especially during the colonial period - which from their point of view continues to this day.

I'm not sure, but I think eating meat raw provided them with Vitamin C.

fnha.ca/wellness/our-histor...

PMRpro
PMRproAmbassador in reply to HeronNS

Me probably to address the claim a carnivore diet covers all the nutritional needs - and I made the point it is genetic adaptation that made it even half reasonable for them.

Well Gert, presumably you have seen a doctor to get your diagnosis. You’ve read here all the reasons to take the only medication that works, prednisolone. I can understand your eagerness to find an alternative which you seem very committed to. But there would be no harm in asking your doctor for a trial of prednisolone, say 20mgm daily for 4 weeks to see how you feel? That way you will at least have experienced the opposing view.

Good luck do let us know how things go.

GertG
GertG in reply to 123mossie

I have the pred at home bought at our loc pharmacy without prescription , which is possible in the country were I live. 15 mg for 10 days. But reluctant to take as I am sure it will be difficult to stop afterwards with all its relief.Will try LDN first. When nothing helps might try the pred.

whitefishbay
whitefishbay in reply to GertG

Wait - what is LDN diet?

GertG
GertG in reply to whitefishbay

Low Dose Naltrexone. Is a medicine for auto immuun diseases. Off label and not mainstream.

PMRpro
PMRproAmbassador in reply to GertG

I think it is stretching it a bit to describe it as a "medicine for autoimmune diseases". There is evidence it may be immunomodulatory but no extensive studies of it as yet:

pubmed.ncbi.nlm.nih.gov/298...

whitefishbay
whitefishbay in reply to PMRpro

Think I will just go mainstream and cut way down on carbs (it's lent after all). Thanks. for the article.

GertG
GertG in reply to whitefishbay

Good to hear and you would certainly benefit from it, especially if you are on the pred and or (pre) diabetic. A few tips:

- Don’t take any advice from nutritionist, doctors, ....and even from me as granted. Do some research yourself so you will be able to pick out what is relevant for you as there are so many conflicting opinions out there. Also you are not mainstream. You are you. What works for me doesn’t have to work for you.

-listen to your body.

-try to understand how the human body works in relation to utilizing energy. Evolutionary we are equipped with a hybrid engine. You can use carbs as fuel or fat. When you go under 20 gram of carbs for most people the switch will go to fat burning.

Most doctors and nutritionist don’t understand the power of this, as we are used to eat so much carbs and so frequently (more than 10 times in the last 100 years) that we screwed up our carb metabolisme , get fat ( carbs make you fat not the fat you eat) and sick.

By going Keto or Carnivore you bypass this metabolisme and get a super healthy starting position back, your blood sugar get normal in days and you will loose weight over time easily, feel more energized and without any cravings. When on diabetic medication or type 1 diabetes you have to be carefully and get monitored, as you fb drops so fast that it can get you by surprise if you don’t lower or stop the medication in time. For a good start see dietdoctor.com. With this diet you will hit the jackpot. Lowering you carbs, especially on a low fat diet, but still above the 20 gram carb threshold means still cravings, less energy and less benefits. Carbs above the threshold and higher fat is not optimal either. Be aware that it can take between 1 week and 4 weeks for your body to adapt to fat burning. And don’t see it as a short term weight loss. Stay on it your whole life to reap the benefits. Succes.

Just throwing this into the mix: most people on here would not have been eating the high-oxalate diet you have done for the last few years. Yet we came down with PMR anyway.

Nobody knows what causes PMR but the consensus seems clear - whatever else is going on, some sort of stress triggers PMR. It could be physical stress, as in injury, or emotional or even stresses of a toxic workplace. We are all different, and maybe your diet is a factor in your particular version of PMR. My personal recommendation is that you adopt a more balanced approach.

When I was not diagnosed by a former doctor (she and I both thought I had worsening osteoarthritis) I googled my symptoms and discovered PMR. Upon seeing it was treated with steroids I immediately dismissed the idea as I thought I couldn't possibly have anything so serious. A few months later, a new doctor, a diagnosis and I went straight from the doctor's office to the pharmacy, home and took my first dose of pred!

Hosers2
Hosers2 in reply to HeronNS

Heron; I link my getting PMR to having been on Simvistatin for three years (5 years ago). The statin led me to experiencing shoulder problems (doc recommended rotator surgery), stiff and weak wrists and hands (doc recommended carpal tunnel surgery), and inability to get up off the ground without help. I thought my building career was over, as I couldn’t even hold on to a drill with both hands.

I read in a blog about a man who experienced the same problems, and blamed them on statins. So I quit, cold turkey, without even informing my doc. A month later, every problem had disappeared. (2015).

Fathers Day, June (20200 I awoke to all of the same problems. Shoulders, hips, hands, dead fingers. I couldn’t even roll over in bed. Eight weeks later, I was diagnosed with PMR. 15mg Prednisone to start, taper to 12.5, and then to 10mg in two months. Reduce by 1mg each month.

HeronNS
HeronNS in reply to Hosers2

Yes I should have mentioned the role of drug side effect too, shouldn't I? I've heard that statins are quite problematic for a number of reasons. It's hard to believe that some years ago they were considered so miraculous there was actually a suggestion statins should be put into our drinking water! Glad that one didn't work out 😲

GertG
GertG in reply to HeronNS

The statin story is an example of tunnel thinking, bad science, statistical manipulation by big pharma and doctors that don't dig deep in the working of the body. See on youtube David Diamond Demonizing and deception in cholesterol research. In and in sad that you had find it out yourself, as I had to do as well with my health issues. In the aviaton the change protocols and materials directly after a crash. We all get sicker and they still don't get it that it might be because the protocols, nutrition and medication that is missing a holistic scientific approach and is hacked by the foodindustry and big pharma

Hi. I was already taking LDN when I was diagnosed with PMR, for an entirely different autoimmune issue, with great success.

I am not one to take any kind medication unnecessarily, but I take Prednisolone for PMR and now GCA as it is the only option.

What I would say though is that I believe the LDN has helped alongside Prednisolone, as it is a powerful anti inflammatory as well as an immune moderator.

If I thought I could ditch the Prednisolone and purely take LDN, I would have done so, a long time ago, but sadly it is not the answer.

GertG
GertG in reply to Songbird69

Thxs. Usefull to know your experience. If LDN not working I will add the pred. and take them both.

Hi GertG

I really enjoy my cold water swimming as it really helps the pain levels however I just could not manage this condition without prednisolone. Not only because of the pain and stiffness but because uncontrolled inflammation is so bad for the body and can lead to all-sorts of things. And it really spoils your quality of life.

I do agree that there are things you can do to help, low carb, keep moving etc as they may help you be on slightly less pred but nothing replaces pred and the pain and inflammation relief.

I wish you well in your journey.

GertG
GertG in reply to Coffeebeans

Thxs coffeebeans.

Get more and more the impression that pred is the only way to get forward, as your cold therapy is not doing enough either for getting ride of the inflammation.

Since on Keto/Carnivore I got completely rid of my monthly colds/flu. Even when my wife got the severe swine flu (h1n1), she could not get me sick. On the pred those things will likely come back and Covid is still around the corner. Won’t give up yet but might end up with pred as all of you.

Coffeebeans
Coffeebeans in reply to GertG

Don't assume you will be ill again with colds etc on pred - I haven't noticed any increase whatsoever and certainly haven't been ill since covid restrictions. The vaccine is here and we can still wash hands and keep a distance from unwell people after covid.

I do agree with Sheffield Jane, you have already got all the focus in the right areas to absolutely minimise any effects from pred and should therefore go for the absolute relief you will get from pred. But carry on with the ice baths if you have no reason to stop - blood pressure etc!

Kendrew
Kendrew in reply to Coffeebeans

I've not had one cold or sore throat in the two years I've been on pred and normally I would have several of each through the autumn and winter. Like you, I've seen no escalation of these kind of infections....quite the opposite in fact....probably because we're being super careful with our hygiene!

PMRpro
PMRproAmbassador in reply to Kendrew

I still get one humdinger of a cold a year - just as before. But I haven't had that this last year!

Kendrew
Kendrew in reply to PMRpro

Interesting!.....Of course.... it could be the Grüner Veltliner??🙄🙄

PMRpro
PMRproAmbassador in reply to Kendrew

Nah - been drinking that for years ... Probably a Covid effect - though I think I prefer the idea of the GV rather than CV ;)

Kendrew
Kendrew in reply to PMRpro

Haha! Ditto. 😄

Coffeebeans
Coffeebeans in reply to Kendrew

Good to hear Kendrew. Yes, I'm careful too and wash hands after touching cashpoints and the like. Nothing ott, just sensible to keep good hygiene in high traffic areas.

Phew, have I just wasted half an hour of my pain free with Pred life reading all that ?

Hi GertG.

Having read all the responses to your original post, a few points seems to come across with some clarity.

Firstly, your commitment to researching and identifying alternative natural treatments for the various conditions you've encountered is incredibly commendable and I can only have huge respect for your dedication to this.

Secondly, it's evident that many others have trodden this path also and discovered in the end that unfortunately pred has still been the only way forward for them.... particularly when poor quality of life, caused by the persistent pain has more than outweighed the ever increasing time with minimal (and often) no improvement from the 'natural' approach.

Thirdly, we're all searching for that elusive 'alternative', 'miracle' treatment/therapy/diet/CURE??..... to avoid having to take steroids. So far, thousands of us on the forum will have explored these alternative options but sadly it seems that not one has discovered anything that has proven to fully work and been sustainable.

I truly hope you're successful with your regime and I admire your resilience and fortitude in tolerating the pain and discomfort during this time.

I hate being on the steroids but I've found many ways to counteract any side effects and after 2yrs I'm a healthy weight, and all my blood tests are within normal parameters....blood glucose, cholesterol, liver & kidney function, mineral levels etc.

The important consideration for me, is the balance between feeling well enough to 'function' at a level where I can enjoy life with the people I love and taking a remedial course of action that allows me to do that. I personally don't want to spend 3 or 4yrs struggling and feeling unwell for the sake of avoiding a few years on steroids. I want to live my life now! However, I have a huge amount of respect for your dedication and focus and wish you all the best.....and if you do find a natural, curative solution, please let us know.

Take care. 🙂

Whitner
Whitner in reply to Kendrew

Really well said Kendrew!!

Bcol
Bcol in reply to Kendrew

Quite excellently put.

My advice and apologies is this seems harsh, is don't be a martre to PMR take pred and get on with your life instead of obsessing over alternatives that only give slight relief.

I didn’t mean to belittle or be rude about your endeavours with my previous comment. A lot of it went over my head but I couldn’t stop reading it. I wish you all the best.

GertG could never manage this illness without pred, being in pain all the time does'nt make for a happy life have to say iam like most people on this site we all hate taking it yet we are all glad to pain free. Good luck

I felt like how you describe your reaction when nearly two years ago I started to show symptoms of PMR, and blood tests at the time showed high inflamation markers. I wanted to put out the fire by life style changes, and for me going gluten free and then grain free and then going carb light and toward a meat and fish protein high diet probably helped but six months in I succumbed to a depo-medrone injection. I see now that my health has been knocked probably forever and I'm on that slippery slope of trying to hang on to what I have left. Being 74/75 years old in itself shouldn't have made this happen, I was so active and feeling good in my body previously and of my family who have now passed, 'old age' set in in their 80s, not early 70s. I continue to eat carefully and not indulge in sugary carb filled treats. I was having D-M injections every 5 weeks from last June and that did wonders for nearly 6 months, and having injections of 80mg kept the steroid load low and away from my stomach, but then it just stopped 'working'. I'm now starting 7.5mg preds by mouth daily, and will see if that helps. I was doing cold showers in the morning, going for hour long walks, do gentle yoga exercises for agility and strength 5 mornings a week, but the PMR doesn't go away. I looked into LDN but the reports seem to indicate it is of little use. Sorry I can't be more helpful.

GertG
GertG in reply to Bennijax

Many thxs for sharing your experience. It gives me the feeling that I am not alone in my struggle.

Hi GertG, I do hope you will continue posting about your experiences and I would love to see your reading list. Approaching the problem holistically is the right way to go about it.

Like you (and I imagine everyone else on this forum), I was agonising about the use of Prednisolone to control the condition, and my rheumatologist, sensing my reluctance, sent me for a PET CT scan which not only diagnosed PRM but also excluded LVV and GCA (though one needs to maintain vigilance regarding these as many friends from the forum could tell you). Yes, I was worried about developing diabetes, osteoporosis, cataracts, but more than anything I wanted to be able to live my life fully. I was relatively young at the time of the diagnosis (52), still working and with a young child, I needed to function. I remember walking to a local shop one morning to get a bread roll for my daughter's lunch that day and it fell like walking through thick mud. Steroids may be bad for my bones, but the inability to exercise could be even worse. They may be bad for my blood sugar, but I could change my diet and lifestyle as many on this forum have done very successfully. And if I were to get cataracts, well, my husband is an eye doctor and he must know someone good who could fix it.

I enjoyed reading the lively discussion above about different dietary choices. I think the reality is that we are all different and, like you, need to take control of our diets, experiment and find out what works for our particular bodies. I avoid gluten (though I think the culprit is really just wheat), dairy and I am probably not reacting very well to coffee (I only drink decaf now); it's an ongoing experiment.

I have read some of the Wim Hof book (sorry, it is very badly written, he should have hired a ghostwriter), so I enjoy 90 seconds of ice-cold water at the end of each shower and practice some deep breathing when I go to bed every night.

I discovered that daily low impact exercise is the key to keeping my body pain-free and functional which allows me to recognise PMR pain when it emerges. I see an osteopath who gives me the exercises I need for my particular issues and I make sure I do a bit of gentle cardio each day.

In the beginning, all my efforts were directed at neutralising the side effects of steroids, but after a few months, I wanted to try to address the underlying condition as well, to address the inflammation. However, I would not have had the energy to even attempt to do all this if I was still in pain, unable to live a full life and living a full life was the gift that Prednisolone provided. This forum provided information, different perspectives, support, ideas, and fun.

You are relatively young yourself, active and a man (which helps) and you are extremely engaged with your own care, I am sure you will do well whatever you decide. Keep in touch.

Wow. Many thxs for sharing your life experience.

You need to make sure the meat you eat in your Carnivore diet is not grain fed as this can affect your inflammatory response.

GertG
GertG in reply to Springer2210

I eat mainly beef . My budget is not allowing me to buy grass fed superior beef. Luckily even partially grain fed beef has not that much omega 6 as chicken and pork. I eat mainly Australian beef so assume antibiotics and steroids are not the common practice. By adding fatty fish I compensate for omega 3. The ratio I keep is 1 on 1 which should be the best for low inflammation.

Gluten, pectins,....are not passed into the meat, so are of no concern.

Springer2210
Springer2210 in reply to GertG

I am glad you have researched it all GertG. I am only just starting to look into the nutrition side of PMA & had read about avoiding eating meat from grain fed animals & that pork is not good. The only meat I eat now is chicken & fish.

GertG
GertG in reply to Springer2210

I learned not to go after fragmented advice without supporting evidence. They can drive you away from one food and go to another that is even worse. E.g. the low fat crazy leading to an increase carb consumption. Grain in humans and animals (not cows) is leading to a high omega 6 content in the body fat and low omega 3. High omega 6 and low omega 3 is inflammatory. When we eat to much animal fat with omega 6 (pork and chicken) we get this also in the wrong ratio in our body and create trouble. Herbivores have 4 stomachs full with bacteria that can convert omega 6. So even grain finished cattle has far more favorable omega 3 to 6 ratio. However grass fed beef is better, but has as disadvantage that they are more lean and thus you should add grass fed tallow most of the time. I did in the past some research on it, but forgot the details. But compared to 100 years ago our body fat ratio is going dramatically in the wrong omega 6 direction, which could be the underlaying cause of autoimmune diseases and maybe also our PMR.

Changing your body fat composition by eating the right ratio can take a long time as the half life of the omega 6 is about 5 years in your body.

And what are all the nutritional recommendations of heart/ diabetes and other associations=> eat more heavily processed vegetable oils as they contain healthy omega 6 fats that lower cholesterol. Crazy as it is already know for more than 10 years that inflammation is the culprit and cholesterol just is a bandage to repair the wounds in our arteries. That is why I don’t care about cholesterol but worried very much about my PMR.

HeronNS
HeronNS in reply to GertG

Apparently grain fed animals (even those only "finished" with grain) do not provide us with Vitamin K2, although grass fed animals do. Who knows what other micronutrients are also affected by feeding them a diet for which they have not evolved? How about cutting your beef intake in half and eating grassfed instead?

GertG
GertG in reply to HeronNS

Oeps forgot to mention. You are right. Add 200 mg K2 per day as well. K2 is extremly important for the right distribution of calcium to you bones instead of to your arteries. Vit D I get daily from the sun, that is abonded in my country. But have to add magnesium citrate and add a litle egg shells for calcium. Folate is the most difficult one but get it mainly from Liver and my multi vitamines. Iodin I get from eggs and sea food.

I use mk7 vit K2 which contribute the most.

HeronNS
HeronNS in reply to GertG

That's what I take daily, too. 100 mcg twice a day. :) All our salt is iodized so I don't have to think about that. But I do have to think about Vitamin D, living pretty much on the 45th parallel North!

I watched a couple of videos regarding Wim Hof, the iceman and perhaps I didn’t stay with it long enough, but it didn’t help and I should say that I have PMR for almost two years and have been constantly searching for another answer other than prednisone, also well aware you don’t want to leave your body filled with inflammation; I’m done to 2 1/2 mg and I sleep about 9 hrs a night. I tried THC and combinations of THC/CBD, also without any positive results to inflammation, however, I do take four drops of CBD a in the evening and I have found it helps. I can deal with a lot of pain, but not this, prior to my diagnosis I was so bad I couldn’t sleep or even dress myself, not at all happy about taking any drug, but this has allowed me to function. I should also mention that I’m 67 and six month ago we started building a new. House and I’ve been putting in long days painting, lifting, doing physical things and I have been managing to do all of that. Lastly, I would say the biggest issue for PMR is stress. I keep sharing info on this page in he hope that some day someone will have found an alternative to prednisone that works.

May I ask what your current diet is, does it involve eliminating greens and simple eating meats????

GertG
GertG in reply to remission

Water, beef, tallow, liver, fatty fish, eggs and butter.

Thank you GertG and all other contributors to this post. It has been a most interesting discussion. I wish you well.

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