Is prednisone the only answer?

In a bit of a quandary...I have finally had blood tests done, ( CRP at 120, and ESR at 39) after years of being told by doctors and specialists that I had arthritis, and not much could be done apart from pain medication..Anti inflammatories, panadol, codeine and trammadol. Doctor is now diagnosing me with polymyalgia, and suggest prednisone will have instant effect, but is a reasonably long term thing. I had a ruptured brain aneurysm 4 years ago, which I have thankfully recovered from, but the side effects of Pednisone are making me very wary...I am a 51 year old female...so also struggling with menopause symptoms ( isn't life just peachy?, haha). I am tempted to try natural herbal therapies ( already on Tumeric and have cut out tea and coffee in place of green tea....reading about diets to reduce inflammation ( but also would be nice to have a life to enjoy, rather than suffer through a Kale and sprout existance). I still like a wine and a roast dinner ....I tend to be rather sceptical by nature, and have made an appointment with a herbalist, but it all seems to be based on detoxification ( in my head I am replacing that with "fun and enjoyment elimination"..). Has anyone taken that route, and how have they found the results? I know I have to make a step forward and some changes to try and reduce my constant pain levels, but would prefer to do it without all the bloody pills if I can.

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With the diagnosis of GCA you need an immediate high dose of prednisone to prevent blindness or stroke. As a holistic person I was not thrilled but you have no choice.

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Hi Aleisha, thanks for your reply. But I am now confused...Isn't GCA different from Polymyalgia? Looking back I have probably had this condition for the last 10 years or so, ( maybe a contributing factor to my aneurysm), but is has got increasingly and exponentially worse over the last 18 months...

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Thanks Aleish... my 1st time on here, so I buggered up and put on a new post in reply to yours.. Havent the energy to retype it, so if you have time, please look at the thread? Also, I have loaded this as an app on my ipad, and all appears sideways on my screen..Is this just me? Or any tips on how I can fix it? :)

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I remember that in the beginning just the word "prednisone" was scary. I don't know if someone somewhere hasn't gone into remission using holistic medicine. Some people can have a milder form of PMR. You will have to decide what is best for you. Eileen can tell you the dangers of uncontrolled inflammation if you decide to "ride it out", if that is possible. The brain aneurysm would lead me more towards wanting to control the inflammation. Hopefully your doctor can help you find the right combination of medications and lifestyle to manage all of your symptoms.

It is not always easy to find the right doctor to manage menopause & your hormones and a doctor who understands

PMR....and the blood pressure, etc. related to the aneurysm. They are all inter-connected.

You will find good support on this forum😀

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Thanks Klah, good info. Who is Eileen? Do I do a search on this page to find her? Sorry for being rather naieve, just trying to research my options. To be honest, the weight gain and puffy face factor is a side effect I am loathe to have happen ( can ill afford it as it is!) but the longer long term side effects are of great concern with regard to the prednisone..so this is a desperate attempt to see if anyone has managed to control the condition without prednisone:(,

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I do not think you are being naive😀 I understand that, after all you have been through, you would like to avoid any further

side effects or complications if possible. You can't know in advance how the prednisone will effect you. You are right to gather information. The people on this forum have a lot of experience & compassion....Eileen is one of our experts.....she will find you!!

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Eileen is PMRpro on this forum. She will be along later, and she is knowledge personified. Prednisolone is really the only option for PMR. Many people want to try without it because of side effects, but according to wisdom on this forum nothing else works, and when it does it is AMAZING ago be out of pain. It sound as though have had a really rough time for someone so young anicholson. I wish you the very best for your recovery.

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Thanks Mary, yes it does sound like a magic bullet to be free of pain ( I can't remember what that even feels like), but just still so wary of Prednisone..hence my query if anyone has managed to get this condition under management without it..:)Thank you so much for your reply and your kind thoughts :)

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don't be too afraid of pred, I have been taking it for 5 years without any symptoms, that I have noticed. re you rather that than be racked in pain, and yes our lovely Eileen will be able to give you more assurance and help

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I agree....don't be afraid of prednisone. I felt the same way you do, and the first thing I told the rheumi the day I was dx was No Prednisone! She quickly changed my mind.

My miserable 3 weeks of not being able to move, basically, improved dramatically in 48 hours with 15mg of prednisone.

If you are like most of us, you will be down to a low dose in like 6-9 months. The side effects (and maybe you won't even have any!) will get less and less with time.

Trust me, prednisone will become your friend!

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Many of us must have shared your fear of prednisone, but once you are out of pain I hope you will come to respect it. Not everyone gets all the listed side-effects and some can be avoided or managed by good diet and gentle activity. If you do start it, make sure you have a DEXA scan to see what your bone density is like now, as a baseline. Calcium and Vitamin D will help to look after your bones, as will walking.

There are folk on this Forum who use alternative remedies and methods, but are also on pred! Search for 'HeronNS' (in Canada) she is one.

Eileen (aka PMRpro) has been on pred for many years and I'm fairly sure she says she has had no side-effects - but I'm sure she will reply to you.

Take care and I hope you are soon reporting an improvement to us!

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We'd all like to do without the "B£**&^ pills" - but the only option for a decent life with PMR is pred. I suggest you try a short course of probably 20mg and see how it works. If it makes no difference your doctor may need to go back to the drawing board - but most of us can remember the utter bliss of the relief we got within a short time of starting pred. After 5 years of PMR I went from immobile and in constant pain to mobile and almost no pain (some bursitis took a few months to go) in 6 hours.

Detoxification is a load of baloney which parts you from one thing and one thing only: your heard earned cash. Your liver and kidneys are the body's very efficient detox system. When people feel better after a "detox" it is because they have been stopped from eating junk food and their diet is immeasurably better!

Using dietary approaches may help you manage on a lower dose of pred but it won't manage PMR successfully. There have been people who claimed they could and did - but their descriptions of how they lived made it very obvious that they did still have pain and disability, their diet cost a fortune and they probably spent a few hours every day buying and then processing foods like kale and sprouts for every meal.

I have been on pred for 8 years (I probably have what is now being termed refractory PMR and it is unusual) and had 5 years of PMR before that. I gained weight because I couldn't exercise and comfort ate, I was always short-tempered because of pain. I was depressed because of the pain and isolation as well as the illness itself. Immobility is a high risk factor for osteoporosis, diabetes and raised cholesterol. All of those get blamed on pred - but for me it was the PMR. With pred I stopped comfort eating (it makes me less interested in food, my daughter is the same!), I didn't gain more weight, it redistributed. I was less bad-tempered and happier. And I didn't hurt so I could move again. Now I live a fairly normal life - I certainly didn't before. I did have a bad 9 months of side effects on Medrol, I have been fine since switching to prednisone. I have lost about 35lbs in weight by cutting carbs drastically, the beard has gone, my hair and skin is fine. I have no sign of diabetes or osteoporosis (almost no change in bone density in 7 years of pred).

Most side effects of pred can be managed when you know how - and in PMR it provides a decent quality of life. And everyone who forgets a tablet and has a mini-flare says the same - never again!!!! Pred isn't all bad.

Eileen

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Thank you for your honest and raw reply. That is very much food for thought for me.. I have an appointment booked for a "miracle herbalist" tomorrow..

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Now I may cancel it.. OMG , so not sure! I want to think that there is an alternative to prednisone.....?

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My miracle was pred! When anyone claims to have a miracle cure-all for anything it is rarely a miracle...

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Prednisolone has given me my life back , today I defrosted the freezer did a grocery shop now getting lunch , little rest planned . We have also booked a holiday to Italy in October. Slowly reducing. I have been thinking about my Nana , I remember helping Mum to push and drag her upstairs till she stopped getting up at all , then came horrendous bed sores . Then just morphine till she died . This was very early sixties . I am certain now that she had PMR . The side effects from prednisolone for me are better than not being able to function at all . The PMR for me had been coming on for quite a while but I could not walk after the overnight flight from Cuba last Nov. I have not seen a Rhuemy ,think they seem a mixed bag , GP is good so that's ok . Thanks for this site . Carol

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I have a couple of pain based conditions and take heavy duty prescription Pain killers which did not touch the PMR pain. Pred is only thing that touched it and I wish Dr had left me on higher dose for longer despite my concerns of taking pred. Slower taper would have controlled symptoms more effective treatment. That is key word effective treatment. I have tried a range of herbal medicines in past with no discernable help.

If you had a badly broken leg would you want to have marshmallow dressing instead of a pot for 6 -8 weeks? Of course marshmallow would probably not atrophy muscle but it wouldn't allow leg to heal either and would make you immobile. Pred is the PMR pot of the body. Being in pain makes you make decisions that might not be the bedt and not all herbal or complementary therapies are good for you. And are certainly not good for pocket.

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You have an appointment, go and see what the herbalist has to say, there is nothing wrong with considering all options. A lot of us have tried different approaches for the pain

and

fatigue and other flare issues....vitamins,

diet, massage, dry needling, etc. Get plenty of rest along the way😊

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Hi anicholson, as Dorset Lady says don't kid yourself there is no such thing as a miracle herbalist for PMR and GCA. Steroids are a miracle drug though, just sad there are side effects, which is probably true of the majority of drugs anyway. I had a friend who thinks she is a miracle herbalist and she was horrified that I was going to take steroids. I then discovered two other people who practised alternative medicine who had PMR and they were taking steroids. Having been on this forum for nearly three years I have seen several people go through what you are going through. I think on average it takes about three months before the pain gets too much for them. As PMRPro says if you try pred say for a week and it does not work then you know you haven't got PMR. If it does work you should get rid of a lot of the pain and start to live a life again.

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Hi,

There isn't such a thing as a "miracle herbalist"! However, many on here have referred to Pred as a miracle! Undoubtedly there are side effects to Pred, but that can be said for many drugs, in fact the ones you're already taking are probably as bad if not worse, certainly for your digestive tract.

Not sure why it gets such a bad press, but certainly many doctors don't help with their attitude to it.

The hamster cheeks are not very flattering I'd agree, but if it gets rid of your pain then a small price to pay. You don't have to pack on the weight, just be sensible regarding processed carbs etc, and you may find that you can be more active if you have less pain which obviously helps with maintaining weight.

I took Pred for over 4 years starting at 80mg p/day - late GCA diagnosis unfortunately after losing sight in right eye. In the 18 months being undiagnosed I took virtually all the OTC painkillers I could lay my hands on, nothing touched the pain.

Anti-inflammatory foods may help to a certain degree, but they will not control the inflammation sufficiently, and in the meantime you are putting your blood vessels under more strain, which could lead to more problems. If you've already had a ruptured brain aneurysm (which could have been caused by something completely different I know) I personally wouldn't be putting myself at further risk.

Lots have tried "alternative" remedies, but most succumb to Pred eventually, unless they are very lucky and have a strain of PMR which doesn't seem as rampant as many get.

On another note, I find the HU app even more user unfriendly than the main site!

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Anicholson, I think there are a very few people who claim to have recovered solely through using natural methods. Unfortunately we have no way of knowing whether they would have gone into remission without pred anyway - there are so many possible reasons for PMR symptoms that an early natural remission may be possible in a very few cases, whether or not a given herbal protocol or whatever was followed. Many of us have already lived the kind of healthy life prescribed by those who promote natural methods and that didn't stop us from becoming ill in the first place, nor speed up recovery later. I self-diagnosed many months before a doctor diagnosed me. I immediately dismissed my diagnosis because I honestly didn't believe I could have anything which would warrant taking steroids. Believe me, months later when I got my pred prescription I went straight to the pharmacy, filled it, and took the first tablets as soon as I could! And because doctors are so terrified of prednisone I believe that if a non-drug treatment had been shown to be a reliable therapy even they would accept it and promote it.That being said, there are always things we can do to help ourselves and keep ourselves as healthy as possible in the face of the probable pred side effects.

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From my own expeiences with Pred. It can help but it can also mess with other things. I am currently battling diabetese as a result of being given a very high dose following - I was eventually told - a relapse in my WG. I appreciate it may not answer your questions but never be afraid to question decisions taken about your health. I found it possible to wean myself off it, with my Nephrologist's agreement. Unfortunately, my Rheumatologist didn't agree and after two weeks in hospital, She left the local NHS.

Hope you are soon on the way to a more beneficial result.

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It does depend what it is for - pred is the only realistic option for PMR and weaning off it before the PMR has decided to go into remission itself only results in a return of symptoms. It is different in other illnesses.

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Having been diagnosed with diabetes 17 years ago I am just wonder how you were left untreated for long enough on steroids to see neurologist? I assume pre-existing issue? That's why I queried WG.

I have explored all sorts of vitamin and herbal approaches to illness and in 90s onwards spent a fortune on such things. I have had Chinese herbal medicine, accupunture (which was good for me) kinesiology, multivitamins...specific stronger vitamins and herbal remedies.. turmeric and black pepper most recent. Vegan diet for 8 years, vegetarian diet for 30 years, hypnosis, massage (good for me)..i have been fat, thin and inbetween.. in fact I might argue looking at that list that my health was impacted even more by testing those 'cures' . The ones that worked best in all cases was where I could hand my body to someone and they took responsibility for it for an hour or two physically. I can't remember a gp in my surgery even examining my physical body for years.

Most people don't think of their bodies much when it's working..its taken for granted. An illness like Pmr means you HAVE to consider your body because it goes everywhere with you. We all have good and bad experiences with medications and medical profession. I believe you should have control over what you put in your body. But what this group has shown me is that despite the issues with steroids many, many of us value having some sort of quality life back. It's not easy whatever approach you take.

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Relapse in wg?

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Sorry nephrologist .. ..predictive text!

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So many have said it so well for prednisone! Thank goodness for it. I have not gained weight, I don't have the moon face, but I have energy and very little pain - if at all. I have been on it for 8 months now and I'm tritating down very well. My CRP was 82, then down to 54, and will find out next week what it is now. I started at 20 mgs, and am at 7 mgs now. I had a bump in the road over the winter and developed bronchitis and had to go up again, but since then I've been holding strong.

I have another condition too that I went for treatment for, and the treatment may actually help my PMR. So I am excited to see where I stand.

Bottom line - Try to see prednisone as your friend in this journey. It is really a wonder drug for me!

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I think we would all like to not take pills ive been down the complimenatary root many times but i take pred and rarely see rhumy i just adjust to my needs so if i get bad i up to 15 to 20 mg reducing often 2 days later by 5 mg and rey to srayvat 5 to limmit long term side effects. Giving up meat and dairy is important my pr morphed into r/a 15 years ago and i have cured it with just juicing and litmus testing for alkalinity under the tounge diy.

Met someone who cured herself too recently so theirs always hope.

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If you have PMR there's no alternative to Prednisone. I started on 20 mg last September and had relief within 2 weeks. So far, the only side effects were hair loss and facial hair but both have disappeared since I've reduced to 7 mg. I was willing to live with those side effects because I felt so much better. I did change my diet, reduced carbs, eliminated sugar, white flour, coffee, cheese but I still have them once in a while, as a treat. Actually, I feel better on this new diet, I feel lighter. Good luck, I hope you feel better soon.

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The advantage of hair loss is that I do not have to shave under my arms when I go swimming!

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Piglette I just love that comment. Just so funny but I agree with you.

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Yea, nor legs, now I'm back to shaving

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I was originally Dx with PMR in 2004 and have taken prednisone off and on since then and I have tolerated it very well except for a few aesthetic things you cannot when temporarily on a super high dose for GCA which I did not develop until 2016 and believe me I was grateful that I could take prednisone and stop the GCA. Prednisone is a hormone, a steroid not just a manufactured drug. It repleicates something your body organicly makes. There is no substitute. I do all I can to eat clean and use holistic means to manage my several autoimmune conditions and remission of leukemia. The aesthetic things go away with a smaller dose but the damage GCA can do in short order is nothing to mess with. It requires the patient be vigilant in taking complete care of themselves. Not just rheumatologist visits but also ophthalmologist appointments to guard against damage and blindness. Actemra is the only other thing that works on GCA and PMR and it's a great drug to escalate the prednisone taper but it has a huge list of side effects. Everything does. I tolerated it well for 9 months. It's all about a risk vs benefit calculus. You have to make the determination with your medical team about what is right for you. I am extremely grateful for the medical team I have put together over the years and I could not imagine what life would be like if I did not have the benefit and blessing of having these healthcare professionals and the contributions they bring to my healthcare. I use everything available to me to build a support system deep and wide because it honestly takes a lot to manage such dynamic diseases/conditions. My main advice to anyone regardless of what they are fighting be it cancer or an autoimmune disorder is "Be good to yourself!" Massage, essential oils, acupuncture, eating clean all play a role in helping me do just that but believe me when I say there is no substitute for what prednisone administered properly can do for you.

Best ~

S

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Well said😊

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Hi anicholson,

As someone who was determined not to take Pred for fear of all the possible side effects, however, I was guided by the many experts on this site, especially PMRpro and DL and common sense won the day. I started on 15mg on 1 April dropping slowly to 13mg now. I am sure the side effects vary greatly from person to person, fortunately for me, my only real side effect is a little nausea from time to time. Pred is a magic drug and as many will testify, preforms miracles, don't be frightened to give it a go, if you do have PMR, not only will it confirm the diagnosis but improve your life immeasurably. All the best. John

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Thanks John...I have finally got my head around it all, and will be starting on prednisone tomorrow..Hopefully will be ably to reduce the dose reasonably quickly...at least feeling hopeful that I may finally be without constant pain...Have forgotten ho that feels :) Cheers Anny

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Hi Anny, I hope the magic of pred happens quickly for you.

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You say you want to "reduce the dose reasonably quickly". Don't rush it. Your body will tell you when to reduce and if you rush it PMR pain will come back with a vengeance. For me, I had to learn to "go with the flow", stay away from mental and physical stress and listen to my body. You can't rush PMR nor how and when your body will get back to normal. If you rush it you will end up in more pain then it's worth. Good luck.

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