PMRGCAuk
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Today's question #2/2

What is your opinion about steroid dose: should we (a) be using the minimum dose required to achieve maximum relief of symptoms, or instead, should we (b) be using the minimum dose required to produce a tolerable but nonetheless incompletely resolved level of symptoms, in order to achieve a satisfactory quality of life? I'm asking knowing full well that steroids provide symptomatic relief, but do not affect the underlying course of the illness, which has a life of its own, and that less is better in the long run.

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For me it's worked this way: complete relief of all pain, including non-PMR, on 15 mg. From the time I got to 10 or just below I've had what you'd call "niggles" and certainly a return of osteoarthritis stiffness. I figure if I'd wanted to stay at that level of pain relief I'd never have got below 10, and provided the "niggles" never got worse, and provided at least part of each 24 hours I am completely unaware of them, I feel I am doing well. Others will disagree, and still others will never have had the same degree of pain relief I had at the beginning.

Are you researching a book? 😀

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I’m not researching anything but my personal best path forward. Thanks!

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just teasing....

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Hi,

Nobody wants to take more Pred than is necessary obviously, but personally I don’t see the point in taking too little! All that achieves is leaving yourself in pain, but also leaving yourself open to the side effects of Pred. A lose-lose situation in my book.

You can still achieve a satisfactory quality of life, you just have to moderate your expectations a little maybe.

Plus of course if are not taking enough Pred and you allow the inflammation to continue to build up you could be doing more damage to your body in the long run. In fact, you could be leaving the door ajar for GCA to enter - and I can assure you don’t want that.

Put your medical hat on for a moment - would you condone one of your patients taking a smaller dose that they actually require for any illness? No, of course you wouldn’t.

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Whatever result you achieve with your starting dose is your guideline. Then you taper to find the lowest dose that gives the same result. That covers the people who don't get 100% relief.

There is no virtue in "managing" on a lower dose. That just means that each day there is a little bit of left-over inflammation - and it mounts up, just like a tap dripping into a bucket. EVentually it will fill up and overflow. And then - you are back where you started.

However - as Heron says, you may find other things reappear. That is when it is important to listen to your body and not sit there in denial if what is happening is a return of PMR rather than age-related aches and pains.

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Exactly. It was with reluctance I had to admit this mini-flare I'm living through right now, but it didn't take much, really, to get back on track, thank goodness. 🙂 As time has gone by it's become quite easy to distinguish between my various sources of pain, but I imagine it's more difficult for some people, especially those who have ?fibro or something else perhaps not diagnosed.

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Hi Arnemrrm,

It is my understanding and possibly my misfortune ( Aortic Valve Stenosis) that unchecked inflammation can damage our bodies irreparably. I would therefore opt for maximum relief coupled with the lowest possible dose. Otherwise it is a bit like a small fire in a very dry forest, it will eventually flare.

It's a tough judgement to make because some of us never achieve total pain relief and there are a few days of withdrawal pains sometimes. If you under dose yourself you can end up back where you started.Obviously if you take too much Pred you are in serious side effect territory ( mostly cataracts ) I have recently read in a study , provided I think by PMRpro. Most of the other side effects can be dealt with by diet etc.

By the way your cauliflower and bacon was absolutely delicious!

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No - the study did not find serious side effects but fewer side effects than are claimed, other than cataracts, when normal PMR doses are used.

practicalpainmanagement.com...

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Everyone on long-term pred should follow that link and read it, print it off and look at it whenever you feel............. (insert your own words) mine begins with 'f' and ends in 'r'

No prizes for inserting the correct word............

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Thank you, very thoughtful and well stated. I’m so sorry to hear of the AS. I am completely baffled as to what might be the primary cause of this unbridled immunological storm, and why it manifests so stereotypically as hip and shoulder tendinitis coupled in more advanced forms as vasculitis. I know of nothing like it.

Glad you liked the recipe.

Arnie

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I am convinced stress is the primary cause since the mind has such an influence over the body. On a post I posted a while ago, looking at the responses received and gleaning some members histories from their stories, many of us have had stressful jobs, (seemingly coping well with the stress at the time )and many (including yourself) have suffered emotional trauma shortly before diagnosis.

As far as 'why it manifests stereotypically as hip and shoulder tendinitis' I think you are being somewhat naive since you couldn't be further from the truth. For many of us we did not have 'stereotypical' symptoms you list. Oh that diagnosis was so easy!

In my case I went to a physio privately due to aches and pain in buttocks and upper thighs. Then my legs wouldn't work due to stiffness so doc sent me to have X-rays on hips, even though I told him problem with hips was due to over compensating due to stiffness in legs.

It was only when I couldn't lift my arms and the sides of my neck started to swell, and in panic I googled these symptoms that PMR popped up on my screen! I returned to my doc asking him to consider PMR, which was confirmed by the private Rheumy I saw because we hadn't received even received a date in five weeks since doc had made NHS referral. By this time (over a period of about three months) I was in dire straits and at 58 suddenly found that I could not get myself into bed, dress, shower bend etc independently? I was quite frankly terrified I was going to be paralysed for life. So effectively I self diagnosed via the Internet. However even the Internet only recognised, as possible symptoms of PMR, those symptoms relating to upper body not the earlier debiltating symptoms relating to the lower body. Others on this site have experienced similar difficulties with diagnosis hence my questioning your choice of the word 'stereotypical' - I think not. Surely, if symptoms were stereotypical diagnosis would not take months or in some cases years?

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I completely agree with you about stress! As I wake up in shoulder, neck and hip pain and stiffness every morning, despite 20 mg of prednisone, I am told I am not typical pmr/GCA because I still have inflammation and pain. By noon, I am another person! I sit and wait for my Rheum to figure out what he wants to call it. Meanwhile the inflammation marches on.

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He obviously has no understanding of the nature of the disease or how pred works does he? Have you tried experimenting with when you take the pred? Possibly splitting it so you get the effect to carry overnight? The antiinflammatory effect of pred lasts 12-36 hours. If you are a 20+ hour person you will feel fairly OK in the mornings. If you are a 12 hour person the effect will have worn off and it will be as if you didn't take any.

But if you are atypical - then so are a lot of other people. Though in my book, 50% of us, half on either side of the bell-shaped curve, are atypical...

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For the last 5 days, I have been splitting the dose and take at 8:30 and 11:00. I wake up at 3:30 am nearly every morning not in pain, but can't sleep. Then, I have the agony of waiting until 8 :30 to start all over again. I also have ? GCA of my occipital artery. Because my inflammatory markers are rising, and because I still get pain and stiffness, I am just left to wait...and wait

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?GCA of the occipital artery, rising markers and he hasn't put you on a proper GCA dose? Which is at least 40mg and sometimes more. The occipital area is the visual processing centre - and damage there is risking your sight. What on earth is he playing at?

Please find a doctor who knows what they are doing - and if the markers continue to rise, if you get worsening pain or ANY visual symptoms please go to A&E/ER and get a rheumatologist there to see you urgently.

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I have been to emergency 6 times. They don't get it. I even told an ER doctor I have PMR and a new onset headache, crying with the pain, he sent me home because my ESR was only 34. I continue to be wakened with headaches occasionally if I sleep on my back, my scalp is so tender every day, but I am told just be patient, it takes time to figure it all out.

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By which time the patient could have lost vision - I am absolutely disgusted.

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Another concerning ongoing symptom I have is a sore throat and hoarseness. I asked for an ENT referral but was told I didn't need one. A month later, it's still there every day. From what I have read, if it is affecting the laryngeal nerve or if it's from aorta inflammation or rheumatoid nodules, nobody knows.

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That, together with a cough, can be a symptom in GCA.

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Finally convinced my family doctor to check my thyroid again too. It's gone haywire but nobody is watching to see if it stabilizes.

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My symptoms started with my legs and groin. I felt I was constantly pulling muscles in this area and could hardly walk at times. It was some months later that I noticed my neck,shoulders and arms had also been aching as well. I put this down to excessive motor bike riding.

When I went to my GP he diagnosed PMR straight away. Did blood tests that confirmed it. Started on 30mg prednisolone and am now currently on 10 mg. Diagnosed on 14/02/2018, great valentine present.

Had 7 weeks off work to adjust to steroids and analgesics. Just done 2 night duties and am really suffering today.

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Do start another post - this is an old thread and many people may not see it.

Not surprised you have problems after 2 night duties!!!!!!

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It's just the same as any autoimmune disorder - and I envisage a/i diseases as a long shop counter with symptoms on the shelves behind. You queue up and the assistant hands you a random selection of symptoms - and what you get as a label depends on historical descriptions of "syndromes". Nowadays they know more about the different "manufacturers" because of the extra info you get from biochemistry and other technology. Something upsets the immune system, possibly genetics add to the potential effect, and it kicks the body. It is rarely one single thing - little drops of water will finally cause a flood.

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Thanks for the analogies PRMpro. It really helps me understand.

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This thread has been just awesome. Although I have read many of these sentiments before, today was again most enlightening. Thank you all for taking so much of your time to hand hold and guide us through this journey.

I have just half hour ago returned from a 6 hour trip to see my specialist. I was armed with many more questions thanks to this forum, but some of his answers left me wondering. I wanted to discuss my incredible fatigue, he just suggested I was depressed. Huh? NOT! On the way home, my husband suggested that the best advice I could receive about PMR was right here from all you wonderful folks. "You've lived it and you know it", he said. Three cheers!

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Someone on another forum, for rheumatoid arthritis, has been told by his rheumy that fatigue is NOT part of RA. You can imagine there is not a single response agreeing with THAT sentiment!

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Often my dosage question is whether I should sit on the couch all day and have no pain, or keep testing the limits with activity...and guessing wrong!...then a flare!

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Greetings ARNEMRRM,

So the conundrum we face might be thus ......do you live with some possible discomfort or pain due to a too low dose and potential damage caused by chronic inflammation, or as with me live with consequences of permanent tendon damage (massive inoperable rotator cuff tears) caused by the euphoria of being pain free and forgetting that you've still got the disease. Phew tha twas a long sentence! My surgeon was quite sure my shoulder injury is a direct consequence of the tendons being weakened by the steroid.

I am very interested in PMRpros observaton about the potential for long term problems as a consequence of living with uncontrolled inflammation. Any research on this one folks?

My strategy over the last 18 months (2 years 6 months so far on pred) has been to live with some discomfort comensurate with a reasonable quality of life even though in my heart I know it could be reduced. When you've also had to cope with loss of some sight and subsequent glaucoma surgery and the known side effect of increased eye pressure the mind becomes well focussed.

This Forum has been my lifeline as sadly, apart from my orthopaedic surgeon, the medics haven't been of much help.

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Long term low level inflammatory levels are often talked about in relationship to increasing the risk of developing various cancers, in GCA and PMR it definitely can continue to damage the arteries - leading to impaired blood flow, rough surfaces that plaque forms on or clots catch on and, potentially, all the cardiovascular disorders related to that, stroke, MI, peripheral occlusive arterial disease and so on.

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My mom just had glaucoma and cataract surgery, has had 2 bad breaks from osteoporosis, my dad had diabetes, so as I am new to this prednisone journey, I shutter to think what can lie ahead. But, I will take anything not to endure those intense PMR pains pre-prednisone.

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ARNEMRRM

You have a lot to offer as a GP with PMR. If you could carve out of your busy life, a few minutes and make a telephone call to the National Charity and have a talk.

This link might help you with Steroid reduction. pmr-gca-northeast.org.uk/as... It is page 4 of the Summer 2017 Newsletter and it is an article on Steroid reduction plans and Dr Sara Mackie's small fact study.

However, I am intrigued, you know more about resources than most people who when diagnosed with PMR and/or GCA are left totally confused. 10 min appts (sometimes more) with their busy GP and 15 min appt with Consultant or direct to Secondary level if GCA.

GPs are not issued with the BSR Guidelines to Diagnosis and Treatment of both PMR & GCA They have not been approved in the last ten years by NICE (I think it has changed its name).

Both of these guidelines been updated during that time, PMR issued last year, GCA due out shortly.

I think somewhere on this site, I did post three websites, however at my age, I might have simply thought I had. All of these three charities are run by volunteers (except PMR&GCAUK who have managed to finally to raise enough money to employ a part-time employee).

pmrgca.co.uk

The national charity, which runs this thread. Kate Gilbert (who had PMR) has written two books (medically checked). These can be obtained from the charity or via Amazon as hard copies or as an e-book. Currently they are running 'Roadshow' throughout the UK with assistance from the Wellcome Trust to raise the profile of both these auto-immune illnesses as they are on the increase and the forecast is that it will continue to increase.

pmr-gca-northeast.org.uk

The charity which covers the North East.

DVD ' You are Not Alone' made by professional medics and patients, no jargon and aimed to fill that gap when you come out of your GP or Consultant appointment and been diagnosed with an auto-immune illness which neither you or your family, friends, carers have not never come across and you look so well. This can and does happen, not because the medics want it that way.............they are just getting more and more overworked. This charity was awarded a small grant from AWA and without that grant it would not have survived.

A Booklet called 'Living with PMR & GCA' written by patients for patients and medically checked information and where the information was not approved medically, is highlighted.

A link to an International Survey........http://www.quantisurve.com/cgi-bin/pmr.asp which has been running since August 2008. Anyone can fill it in and also look at the ongoing outcome.

PMR-GCA Scotland is a separate charity and a separate organisation to their sister charities as the NHS operates differently under the devolved powers.

10 years ago there was one support group in East Anglia run by a volunteer and ably assisted in this by Professor Bhaskhar Dasgupta and PMR GCA Scotland the first charity in the UK.

Yes, I had GCA for 5 years and am coming up to 7th year in remission.

I knew nothing when diagnosed but I was extremely lucky my GP's practice had one GP who nearly 25 years previously. The practice encountered a person, who it turned out had GCA.

None of them had any experience at that time and that patient had lost their sight. Those GP's had vowed never again. I was the next one.

My Mother had had both PMR & GCA 21 years previously and there had been little or no progress on cause or cure, just a couple of dedicated medical people who were determined and had a dream of starting up a charity dedicated to support, raising awareness (essential for GCA) and pushing for research into cause and cure.

Without Professor Dasgupta and 25 determined people meeting in London, at their own expense, and the Prof finding the venue and paying for refreshments, none of the above would have taken place.

So, whoever reads this:

Can you consider becoming a member?

Go along to a support group or meet-up and see if you like it?

Save some pennies in a jar? They are always down the back of your sofa or chairs doing nothing.

Or think about finding out if you can help in anyway.

For the last ten years I have volunteered and the help has been superb and I have made more friends than I ever dreamt I would ever have done at my age.

I know it is long...................

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FYI, I am a very much retired neurologist and psychiatrist, and live in Florida. In my institution, PMR GCA patients were sent to our rheumatologists for diagnosis and management. I was very keen to be certain that all potential GCA patients, who sometimes presented with headache, were properly evaluated including with arterial biopsy, but when it comes to practical management of the two disorders I have no personal experience. Of course I have used steroids abundantly for many years, all physicians do, but again, individual diagnoses differ very much in the approach, even if the drug is the same.

At this stage in my life I consider myself a former physician more than a physician, but very much a patient, like you all. You can detect in some of my posts my naive eagerness to put this all behind me and move forward, which I'm learning isn't going to happen so readily.

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Yes it does all come down to acceptance which I find can change on a daily basis.

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Why is there not a mult-disciplinary approach to the management of Pmr/gca? I can't seem to get a referral to an ophthalmologist nor ENT, despite ongoing throat and eye problems. I had to spend a considerable amount to go to an optometrist to get my eyes evaluated, was denied a referral to an ophthalmologist, yet my visual field test has to be redone for ?reason. It is beyond frustrating dealing with one doctor who has all the power and no answers.

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Where are you Kath? It does depend on the country.

In most countries PMR/GCA belong to the rheumatologists for historical reasons. PMR was thought to be arthritis and GCA a consequence of PMR. In other countries you may be seen by an opthalmologist or neurologist depending on your presenting symptoms. In the UK an optometrist appointment is not particularly expensive and easy to get and they would refer to an ophthalmologist if there were anything of question.

But once upon a time in the UK there was easy access to sideways referral by a consultant - but the system changed so GPs are responsible for the gate to the specialist. In some hospitals there are still interdisciplinary teams - usually the big ones with research interests.

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Thanks for the reply. I am in Canada. My optometrist appointment was $240, difficult when you're on sick leave. My eye symptom preceded ?PMR/GCA and now both eyes are inflamed ? Optic neuritis. Starting on steroid eye drops too. It seems like everything is connected but the health care system.

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I've heard of a lot of problems from Canada - and it seems to vary greatly from state to state. In the UK a normal appointment at an optician/optometrist for an examination including a visual field test would be free for over 60s and otherwise they quote £20-25. Here in Italy I have to go to the hospital but could be referred by my GP and it would cost 18 euros - not sure I could just go on demand though but my GP would send me if I had problems.

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Sent you a Private Message................

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Bring it on! I desperately need to figure out why the prednisone wears off between 8 am and noon. My Rheum decided I was having possible prednisone side effects and cut my dose from 50 to 25 mg overnight, then to 20 the next day. Sent me into a tailspin. So frustrated he keeps saying I don't fit into a perfect PMR/GCA box, but nothing else fits.

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There is no "perfect" PMRGCA box, silly man! Even sillier to cut your dose like that - and then wonder why you have pain!

I just explained somewhere else - the antiinflammatory effect of pred lasts 12-36 hours depending on the person. If you are a 20+ person then you will get to next morning and not be too bad. If you are a 12 hour person then the symptoms may be back before bedtime. And some people take a long time for pred to work. Just is so.

Every morning your body sheds a new batch of inflammatory substances (cytokines) at about 4-4.30am. The sooner after this you take your pred the less inflammation has been caused for it to mop up. A study showed the optimum time to take the pred to reduce morning symptoms is 2am - then it is at its peak in the blood just as the cytokines arrive and they don't get to do any damage. If you leave it until nearer 8am to take your pred there will be a load for it to do and it takes time to be absorbed and then prednisone has to pass through the liver to become prednislone as well. So it takes 1 to 2 hours at least before it can do anything.

If you are a 12 hour person then it may help to split the dose - often 2/3 in the morning and the rest later in the day so it carries you through the night. There are no fixed times: some people can't sleep if they take the second lot too late. Others can take pred just before bed and sleep like a baby. Maybe the second dose carries you to being able to take the other part of the dose at an 8-9am breakfast. Its fine to experiment a bit.

Theoretically, taking the dose at 8am reduces the adrenal suppression - and if you are on pred just for a few weeks and stop that is a valuable effect. But when you are on pred at above 8mg for any length of time, as we are, that is immaterial: there will be adrenal suppression. So you might just as well take the pred in a way that works best for YOU to suppress YOUR inflammation and symptoms. Not the inflammation and symptoms of MrsI'mon10mgandIfeelfine that he is thinking about!

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Ok thanks so much! I tried taking it early at 5:30 am but that had no lasting effect and wore off by midnight. I will try tomorrow morning at 2 am. Heck it's not like I sleep anyway! I need to get it figured out by Friday so your post's timing is perfect

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It depends on whether you think - as I do - that steroids, their side effects and the stress of trying to come off them, are worse than the original polymyalgia ( whatever your version of this is, and there appear to be many degrees of pain and discomfort - only you can make a judgement on what is liveable with).

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