From NZ

Am new to this site as I am in NZ & can only find info here. Came down with PMR aged 53, 2 years & 4 months ago. It took 9 months before doctors here took things seriously & prescribed pred. First doctor accused me of being an alcoholic, drug user or seriously depressed ( so off the mark, destroying any confidence) & despite the autoimmune conditions running in my family, refused blood tests. Eventually I found a doctor who did this, showing elevated inflammatory markers. Since then I have moved to a small country town & have a doctor from the USA who has worked with PMR patients. However, he doesn't allow pred. to be used for more than a year & it's already 1 1/2 years since my first dose. Right now I am on to 1mg every second day & should be totally off it by June. My fear is that it may flare up worse than it already is & even bring GCA into the picture. I have all the usual pain, stiffness & utter fatigue but need to get off the pred due to the terrible hunger pangs that will not abate otherwise. I no longer recognize my own body & feel like a leper in a society that has no support structures like the UK. People look at me as if I am lying or some kind of fraud. Can anyone tell me why a Rheumatologist controls things in the UK? That aspect of things never entered the picture here. Will this low dose, or no prednisone, bring on a worse scenario, eg GCA? I spent 9 months without medications so might just have to do it all over again...

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  • Hi rosajur, and welcome.

    there are quite a few contributors to this forum that come from NZ so hopefully they will be in touch, and help you feel less isolated, a feeling that loads of people feel at the beginning.

    Lots of doctors still think that PMR etc only affects those in their 70s - so wrong, so don't even consider it in their 50s. But it does sound as if you had a very unsympathic GP.

    Personally I only saw a Rheumy once - thinking I should after reading about them on here - it was 6 months after GCA diagnosed, and he was less than interested, so I never saw him again! I think because its an auto immune problem it comes within their field of expertise, but I'm sure someone better able will explain the full reasons why they are considered the experts.

    Your GP may not want you to be on Pred for more than a year, but I'm afraid it doesn't work like that. PMR is not cured by Pred, it is only kept under control until it goes into remission - and that can take anything between 2-5 years typically. The Pred gets the inflammation under control initially with a biggish dose (dependent on various things) and then you have to reduce slowly keeping that inflammation under control until the PMR burns out. If you stop the Pred whilst you still have PMR then it will flare up again. And if it goes untreated long enough (mine was for 18 months) it can transform into GCA - a much more dangerous beast. I know, unfortunately!

    If you are still in pain and fatigued that could mean your dose is not enough, what are you blood markers? The hunger will abate. And I know what you mean about not being believed, the trouble is Pred gives you a rosy glow - and everybody says "you look well"

    Where abouts in NZ do you live, my daughter lives on the south island near Methven - gorgeous country. Hoping to go back next Christmas.

    Hope you soon feel better.

  • Hi DorsetLady,

    Thanks for your reply. I am living north of Wellington & yes, it is a gorgeous country. Going by what you've said, I am reconsidering the tapering of pred. I have no idea what my blood markers are, as I only get tested for thyroid function, kidneys, diabetes & B12. Regardless, when it comes to daily life, simple things like hanging out the washing feel like a major work out in a gym but of course drs. are not interested in this aspect but for the time being, will stop the tapering, possibly even increase the pred slightly if it will make me feel better.

  • Hi again

    You will still get some fatigue, unfortunately both the PMR and the Pred can cause it, but not as bad as yours sounds. You need to do your bit though and rest when you can you have to learn to pace yourself and let others help. And remember this is a serious illness, it's not like a cold which will go away in a week or so.

    If they are testing you regularly for all the things you list, then don't understand why not for inflammation markers. You could ask, after all you pay towards it don't you? My oldest grandson has just started 2nd year at Wellington Uni - he thinks city is great. Look forward to visiting it again when I return next year.

  • Yes, I will ask to check the inflammation markers on my next blood test. It actually costs me nothing, which is why I was so upset with the initial dr's refusal for blood tests, not once but twice! Good to know these things anyway. Wellington is a lovely city & all the best to you & your grandson.

  • A lot of things were suggested to me - but none of those! How rude - and incompetent.

    Don't feel too badly done by - there are only support structures in the UK because 5 women "met" on another very longstanding forum and got together to form the English branches of PMRGCAUK - because at that time all there was was a charity in Scotland; the northeast of England one followed and eventually the umbrella national charity whose base in London.

    I find it difficult to understand why your current doctor works in PMR if he will only "allow" pred for a year. There is next to no reason for giving pred for so short a time - he might as well not have bothered in the first place - at least without it you wouldn't have known there is a way to manage PMR quite well. And managing it with pred is currently the only option. Other than leaving you to suffer as it appears this one wishes to do.

    Rheumatologists traditionally manage PMR and GCA because the primary visible symptom is of an arthritis/rheumatism even though the actual disease is a vasculitis. It isn't the autoimmune aspect in particular but many rheumatologists will also describe themselves as vascular specialists. I couldn't possibly comment - about some of them at least. There are excellent ones around though!

    This link is to that other forum and is a list of all the literature we suggest reading there

    patient.info/forums/discuss...

    You will find links to the "Bristol paper" where a top UK group acknowledges that PMR is likely to last at least 2 years. The main German rheumatology textbook (no link, it is only published in German) says that PMR lasts an average of 5 years. In the medical literature, experts have in the past quoted that about a quarter of patients are able to discontinue pred in under 2 years but they remain at a higher risk of relapse subsequently. About a half need pred for up to between 4 and 6 years (paralleling the German 5 year figure) and the other quarter of us may need pred for far longer at a low dose, sometimes even for life although whether that is due to the PMR or to adrenal function being poor isn't clear. Those figures do mirror what I have seen in the last 6+ years on 3 different forums and discussing it with rheumatologists from 4 different countries (Italy, Austria, Germany and the UK). Here where I live in Italy there is no question: you need pred for however long you need it and hurrying a reduction will only lead to trouble. There are doctors who consider it is possible that ignoring PMR and not treating it with pred may lead to a progression to GCA - I know I have read it in a medical paper but I have lost the reference and cannot find it again.

    A suggestion - cut your carbs drastically (especially processed carbs with white flour and sugar) and you may find that helps the hunger you describe. Pred changes how your body metabolises simple carbs and can cause wide variation in blood sugar level - when it falls too low you want to eat. Smooth that problem out and it has certainly helped many of us to avoid putting on weight. Carbs are not essential to life and you can get all your need from salad and veggies. Keep fruit to a minimum as well - berries in moderation are OK but things like apples and bananas have a lot of sugar.

    But above all - find another doctor with realistic aspirations when it comes to PMR. Just allowing pred for a year is silly and not in line with any guidelines - unless he has identified a better way of managing the disability of PMR. If he has then he might tell the rest of us! Anyone would think we WANTED to take pred...

  • Hi PMRpro. Thanks for the link to the other forums. It is an eye opener! Especially the Bristol paper, which specifies the dosage & tapering of pred. It is the first time I have seen it detailed like this & makes me realize that I need to re-evaluate my situation & diet & go back to the doctor armed with this info. I was given an initial dose of 40mgs but only took 20 & that very day it was like a miracle happened but as far as tapering, there was no suggestions from the dr so I did it myself, thinking it was for diagnostic purposes only, never long term & my current dr gives me the feeling I am dragging this out, for what purposes, I don't know. The fact that there were no postings of joy once the pmr had gone had me wondering if it really does go, so reading about having to take it for life is beginning to make sense.

    Also there is a link about fatigue prior to pmr which was my next question. Having had shingles at 30, followed quickly by Ross River fever while in Australia, then bouts of flu lasting six months resulting in endless fatigue, in hindsight points to 'cause' of pmr. Anyway, I will go through the other articles with great interest...

  • It often does go so don't despair - remember the forums tend to comprise the people with "problems". Three quarters of patients get off pred in up to about 5 years - the ones who took 2 or 3 years rarely figure greatly here although I know a few with both PMR and GCA who only took a couple of years. It is perceived as such a horrible time by many people that they turn their backs on the forums and all they remind them of very quickly once they don't need the support.

    When I was about 27 I had what was almost certainly the typical herald illness for ME (Myalgic Encephalomyelitis, chronic fatigue syndrome, nmec.org.uk/menonsufferergu... for information about the illness. Does it ring any bells?) It cleared up after about 6 or 7 months although it was years before I could walk upstairs without being exhausted! The fatigue never really went away, but then, I had children! Now I have PMR - is there a connection?

  • Wow, that article on ME certain read like it all could have applied to me in the past, post viral attacks! There must be a connection in there somewhere. Recently I also looked up Ross River fever relapses & the same questions, unanswered by doctors, raised their heads. This forum is helping me already, in making the decision to stop the tapering & start to reverse it until I once again feel like I can at least function 'sort of' normally on a daily basis. No point in dragging out the misery. Thanks.

  • They are possibly/probably all autoimmune in origin - but it is impossible to track a single cause or what any potential cause/trigger does to the immune system and then what the immune system actually does in the body. PMR/GCA cause vasculitis, inflamed blood vessels, probably arteries of various sizes in both. But how? The involvement of particular antibodies is being seen and TNF factor has been implicated - but anti-TNF factor drugs didn't work in PMR.

    Questions, questions!

  • That's awful, rosajur. My sister is a retired GP in NZ and diagnosed my PMR by phone, before my GP confirmed it. There is no excuse for such incompetence. And you shouldn't be pressured to reduce pred so fast. This suggests a lack of understanding of the condition by your present GP. What substitute does he propose in place of pred? You won't necessarily develop GCA as a result of dropping pred. It only controls the symptoms, not the diseases themselves. I suggest that you try to get hold of Kate Gilbert's book 'Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'. It's available in UK from Amazon so probably also in NZ. These doctors should read it too!

    Incidentally - my rheumatologist told me that there are some people who never get completely off pred. I'm on my (very slow) way down from 4.5 to 4mg and don't have the hunger pangs you describe.

  • Hi Annodomini, Thanks for your reply. After reading the two postings above, I am going to re-evaluate my situation with the very low dose of pred. It boils down to life quality at the end of the day & if you are taking around 4mg per day without the hunger pangs, I might give it a go. I actually did buy Kate Gilbert's book last year, read it twice & took it with me to the docs but he dismissed it as being 'alarmist'!! I would agree with you that all doctors should read it. However, the doses of pred were not specified (but the link given above does this) so it gives me more clarity on the situation. To be expected to be 'over' this in a year or two is now ridiculous & I need to take stock of what the next few years may bring. Really appreciate all these replies too.

  • Then he is even more silly than I suggested! Kate is one of the senior people in the PMRGCAUK national charity and was originally closely involved in the work to set up the first English PMRGCA charity in the NE of England. She also was involved in the work to draw up the latest guidelines for management of PMR. Alarmist indeed!

    rheumatology.org/Portals/0/...

    Print that off and highlight her name for him! He'd like to argue with the international experts as well would he? They don't suggest a timescale - just that it should all be done in agreement with the patient and their symptoms. If you have symptoms - you need pred. It is very simple! Anybody would think we LIKED being on pred...

  • Heard this morning that the dr is off to Australia for the winter months so it will be pot luck to see who I will see next. Don't have 100% faith in drs anyway. Good job this forum is established.

  • Bless - what a wuss! Doesn't he like the cold? Wherever he's working I hope he learns something about PMR. And in the meantime, fingers crossed you meet someone who knows what they are doing...

  • Hello rosajur.

    I'm so sorry you seem to have been unfortunate enough to have been treated by incompetent doctors but hope our input on this site might lead you in the right direction.

    Firstly, I think you need to find a practitioner who actually knows about the disease. Normally, it would be a rheumatologist because they deal with musculoskeletal disease and systemic autoimmune conditions and PMR (and GCA) is an autoimmune condition.

    It seems many GPs, and some rheumies, have greater concern for the impact that prednisolene will have on your body than they do for the effects that unmanaged PMR can have. If left untreated GCA can develop, and that is an even more serious condition, and even fatal brain damage or organ failure. So I would suggest that the nasty side effects these steroids can have are a cross we have to bear whilst dealing with the potential for life-threatening conditions if PMR is left unchecked.

    I've had a similar problem with rheumatologists, and GPs, pressing me to drop my dosage at too fast a rate and I have had to go back to (almost) the beginning again because my PMR and GCA had not gone into remission but the medical "experts" seemed to take no notice of what I was telling them. It is true that only the patient truly knows his or her body and what they are experiencing and I'm amazed that many practitioners do not pay heed to their patients, adopting an "I know best" attitude.

    I've been on Pred for over five years now, it's brought on Type 2 Diabetes so that's another diet, and drug, regime!

    I do hope you are fortunate and find a medical professional who knows more than just a little about your health condition but you know, I'm sure, there are always people around on this site who are more than happy to try to help with advice, or to have their ear bent! :-)

  • Thank you GreyOwl for your input. There isn't much choice regarding doctors at the moment & I do find it worrying that I've been left to basically self medicate along the way with advice to reduce as soon as possible. Right now I feel I could go back to the initial 20mg dose & start all over again. I had no idea of the dangerous consequences of too low pred doses. Reading the above postings has also highlighted the fact that this does go on for more than 2 years. How the heck doctors arrived at that number is beyond me. Do they just expect us to suffer? Couldn't bear to have to put up with this for another 3 years & taking on board all the above info, I will be upping my dose as from tomorrow & will up it even further if I'm still feeling terrible. My last bloods showed the diabetes was in check & given that I basically eat healthily, the weight gain shows I need to re-evaluate that too. Low carbs has been suggested. What a relief it is to be able to 'bend your ears'!!!

  • Hi there Rosajur - I'm living in NZ (South Waikato) and Dorset lady is correct, there are a few of us from NZ who are contributors to this forum. Like you, we felt quite isolated due of a lack of equivalent support groups or forums in NZ. However, most of what you need to know as well as support and guidance you can get here. That's the beauty of the internet - distance is no barrier. I also agree with many of the replies to your post. I would definitely buy Kate Gilbert's book which is easily purchased on line and posted out to NZ very quickly. The experience you've encountered with your GP isn't the same as mine - my GP was ( and still is) excellent. Like may GP's she would like me to reduce more quickly and be off the Prednisone much sooner but recognises that I can manage the condition independently while still seeking her medical advice when necessary. I am so fortunate that she is a young doctor from the North of England so had some experience of managing PMR/GCA patients before coming to NZ. Maybe you could 'lend' Kate's book to your GP or better still recommend he buy a copy ( or donate a copy yourself if you can afford it) . He would find valuable insight into a patient's journey and useful links to gain more medical information and insight. I took my copy to the surgery and my GP wrote down the information on how to buy the book for herself and other patients. I wish you the best of luck with your individual journey.

  • Hi magmapearl3, I'm living in the Wairarapa region. Yes, I bought Kate Gilbert's book last year & took it with me to the drs & his reply was that it was 'alarmist'. He's now going over to Australia for the winter months so I will be seeing a different one which should be interesting. At least I will be armed with more info regarding the pred. The Uk appears to be more au fait with this condition somewhat & the last thing I need is to be stressed out by doctors! Thankfully, by reading postings here I have decided to reverse the tapering, increasing the pred until I feel I can at least live a more normal life. Am planning to lend the book to my sister-in-law, who has just graduated as a nurse, to give insight into what goes on with us pmr patients.

    Thanks for your well wishes.

  • Why on earth would he think Kate's book is ' alarmist' I wonder? Maybe he was alarmed at how sensible, well written and informative it was and he realised how little he actually knew! Good luck with the new doctor !

  • He didn't even look at the book for starters. Maybe he had heard of it otherwise so I have no idea how the instantaneous judgement popped into his head. Thanks.

  • Sorry to hear about your battle with doctors who were suppose to help you with PMR. How ironic. Since it appears that you will decide about your dose of medication, keep in mind that pred is washed out of your system within hours and taking it alternate days in essence does not work. You will have to find higher dose that reduces or almost eliminates PMR symptoms, keep it at that dose for at least 2 weeks or longer to stabilize the condition. Then you can attempt tapering. Many of us use "Dead slow" approach, which you can find info on the alternate site. Your reduction should be 10% of the current dose or less. You would alternate new and old dose during transition period...as the table below..

    Prednisone Reduction Schedule

    1 day new dose, 6 days old dose

    1 day new dose, 5 days old dose

    1 day new dose, 4 days old dose

    1 day new dose, 3 days old dose

    1 day new dose, 2 days old dose

    1 day new dose, 1 day old dose

    1 day old dose, 2 days new dose

    1 day old dose, 3 days new dose

    1 day old dose, 4 days new dose

    1 day old dose, 5 days new dose

    1 day old dose, 6 days new dose

    You got advise on diet fro other poster, but also, what helps is to be active. Regular 15-20 min walks several time a day will reduce stiffness and get the blood going and simple stretches will get your flexibility back.

  • Hi nickm001, Thanks for your reply. I have now decided to start reversing the tapering, after seeing what you have posted. Obviously the lower doses of pred are not sufficient, regardless of what the dr says & the panadol does stuff all. Didn't realize my quality of life has been slowly deteriorating until the weekend. Diet wise, low carbs suits me anyway. I used to walk a lot prior to pmr but now it feels like I am dragging a ball & chain on each leg. Hope this changes soon, as I know it's important to get the blood circulating etc however, when I have gone for longer than 30 mins, I suffer the next day. Maybe 20mins is a good idea. It's all so touch & go.

  • Walking is the best thing as you are able to do it. Don't do too much until you feel stronger. Two or three ten minute walks will be better for you at this stage than one thirty minute one. And when you get home (or to the coffee shop, or the park bench, or wherever your walk ends) be sure to rest for at least the same amount of time as you have been exercising. You'll hopefully find your stamina starts to build, but don't worry if that takes a while. My favourite maxim these days : "Things Take Time".

  • I used to be big on walking & to have it all terminated with pmr really upset me. I would do 45minutes per day but in hindsight, although it was the same route, my fitness levels deteriorated in a strange way & I often wondered why. Hello pmr! Now there's no energy but a walk to a coffee shop once in while might be good.

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