PMRGCAuk
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End of my rope

My Rheumatologist recently took me from 10mg. Rayos to 5mg. I was doing well for about a month. Just went back to see her and she decided since I was doing so well, she would take me down to 4mg. for a week then 3mg for a week then 2mg for a week then 1mg Then 0. The pain started a little at 4mg. with leg cramps and chest bone pain. I'm down to 3mg and the pain is getting a little worse. I asked her if I could up the Rayos if the pain starts again and She said to continue her plan. She says my polymyalgia is gone! I was diagnosed about 5months ago but it started in February this year. I have absolutely no faith in her but my nearest rheumatologist on my healthcare plan is 1.5hours away. Hopefully I'll be able to enjoy Christmas and New Year's day but it is not looking good. She doesn't want to see me until February! I would love for Her to be right but her advice is against everything I have read. Any thoughts?

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Oh dear, Klaroche, I fear she is wrong, wrong wrong. There is no way anyone but the person with PMR can tell whether the ailment has gone or not. Inflammation markers should be low if the medication is doing its job, doesn't mean you are cured! Prednisone and its relatives don't cure, they merely control the symptoms. Do you have enough medication to up your dose to 5 mg again, hoping that will curb the pain? Is there a GP in your life who could take on managing your care? And remission of PMR is almost never going to occur in less than two years, let alone less than one, although I think there may be incidences of people suffering PMR-like symptoms who recover more quickly, but their symptoms are caused by something other than whatever our classic disease is.

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I should add that you might be in remission, but after several months on Rayos your adrenal function will be suppressed so at the very least you have to have a MUCH SLOWER TAPER to allow the adrenals to pick up their pace again.

The accepted rate of reduction is 10% of the dose. As you can see, you did extremely well being able to manage the 50% drop from 10 to 5. To ask more so soon is courting a relapse, whether it's withdrawal, adrenal insufficiency or flare of PMR.

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Thank you Herron NS, she wants blood work done in 7weeks so I cannot up my Rayos on my own and she controls the 1mg tabs so I wouldn't have enough to come back down as she wants, also the labs would not come back accurate. I also had very low markers for inflammation which went to normal almost immediately after prednisone was started. I fear she is going to cause a full blown flare and I'll have to start over again. I do have a GP but he said the insurance makes him turn me to a rheumatologist. He can refer me to another but as I said earlier, they are 1.5 hours away. Thank you, at least I know I'm thinking properly. Merry Christmas

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I am sorry to hear of your plight.

I have had a similar experience with my Rheumatologist. I have requested a second opinion of another who has a specialist interest in PMR and treats symptoms and not blood markers.

Coincidentally he works in a hospital about 1.5 hours away but I am delighted he has agreed to see me. I am sure it will be worth the travelling time.

Would you travel by car or rely on public transport? If you could get there in a car, I would urge you to rethink about seeing him. You will really need someone on your side on this awful PMR journey.

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Thank you, I will have my Husband drive me. Some days I'm able to drive and some days not so much. Have a beautiful Christmas.

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Hi klaroche

It's not a good time of year to be reducing and suffering. The main problem being that dr will generally be off enjoying festive period and unavailable. If you feel like PMR still symptomatic you need to be forceful and provide Dr with guidelines and other mater on pmrgca part of website. You need to taper more effectively and controlled. If was reasonably well controlled at 4mg I would at least stick There until you can have another more effective discussion about tapering. I have been dx since June 2016 and am at 10mg having flared at 8mg.

I am sure people with more advice on how inflammation and pred works will be along. Good luck🌻

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Thank you.

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I wish I could help you more. I looked back at your other posts and see that only two months ago your doctor was thinking you needed to be careful because you were showing some GCA signs. Is this the rheumatologist with the "good reputation" who now tells you you're better? Maybe she needs a Christmas present from you? This book:

amazon.ca/Polymyalgia-Rheum...

Polymyalgia Rheumatica and Giant Cell Arteritis Paperback – Apr 11 2016 by Bhaskar Dasgupta (Editor),‎ Christian Dejaco (Editor)

It's expensive, I passed my copy on to my doctor after reading it because it really is for the medical profession.

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I got my copy signed by Christian Dejaco yesterday!!!! He is my new rheumy - and he is lovely! Looks about 20 but hey-ho - it's just like police looking young...

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I'd forgotten how expensive it is. Fortunately I also got our local library to buy it so I can borrow if needed. They still won't buy Kate's book because it's "self published". Someday I'll buy a copy of the 2nd edition and donate it to them, with the proviso they catalogue it and put it on the shelf!

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Thank you. Yes she is the same doctor with the good reputation but that is with fibromyalgia. I don't know what her rating is with polymyalgia. I'm thinking maybe not so much. I guess I'll do as she asks but I will invest in the book you mention. I have "Polymyalgia Rheumatic and Giant Cell Arthritis: a survival guide. 2nd edition" by Kate Gilbert. I'm going to read it again and highlight the tapering. Thanks again.

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And what exactly makes her think the PMR is gone? You would be one in a very large number if it is! The only way to know is when you reduce SLOWLY to zero and the symptoms don't come back. Obviously you could probably manage with 5mg for a while more - but what is possessing her to taper you to zero over 5 weeks? 10mg to zero in 9 weeks is crazy.

But above all - what makes her so sure your adrenal glands will just take up the slack?

I''ll add to the recommended reading:

academic.oup.com/rheumatolo...

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PMRpro, thank you. It is so good to see your thoughts, they are the exactly the same thoughts I have been having. I will read and print out the recommended reading. Have a beautiful holiday.

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Hmmm! That plan is not in the treatment guidelines. PMR lasts on average 2-4 years. I believe that you will be courting the trouble that has already begun. If I had enough tablets I would be tempted to raise my dose to the last comfortable dose and see the Rheumie soon in the new year. You are just going to spoil your Christmas.

Does she have a rationale for this unusual advice?

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Sheffieldjane thank you for your reply. Her rationale was the PMR was gone. I do not have enough pills to do anything than what she has suggested. I guess I shall see. I have pretty much made up my mind if I go back to the beginning level of pain, I will see my GP and request a transfer to the rhumy in Riverside. Thank you to all for your replies.

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I drive an hour, forty minutes to get to my rheumatologist. It's really not that bad. I try to get a morning appointment and make a day of it. You don't need to go that often and it's worth the time to get proper care.

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I have a feeling I will be driving into Riverside. Thank you!

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You know your body! I went two years with a doctor telling me my PMR symptoms were normal aches and pains of being 61/62. Bullshit.

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You must be a New Yorker at heart with your language! Girl after my own heart!

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Boston girl.... now living in Brighton UK.

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I also travel 2and a half hours to see my Consultant- well worth it!! I would really seek a second opinion. I think your instincts are right. Jackie

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Thank you Jackoh, I will go with my gut.

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The Dr. sounds horrible! Listen to your body, take drugs that help your symptoms.

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This Rheumatologist woman sounds mad at best and dangerous at worst. Is there any way you could a) discuss the problems you're having with her with your Healthcare plan people and/or b) discuss it with your GP? You simply can't carry on like this and as for PMR having gone in 5 months, what kind of world is she living in??!! I read all these posts that so many PMR colleagues send about Rheumatologists and wonder if there are any who actually know what they're doing! I wish all those who hand out such ridiculous advice a severe dose of PMR themselves and then see how they treat it. I was diagnosed in March of this year and started at 15mg increased to 20mg and now, very very carefully, have managed to get myself down to 5mg. My GP says he thinks I know what I'm doing (nobody's ever said that to me before??!!) but he is there for help and advice should I need it. It seems to be working out very well so far. Please accept my very best wishes for Christmas and the New Year. If you're not seeing this woman until February, I'd be tempted to up my medication certainly until after the New Year and review the situation then. You are in charge here, not her. You're the one in pain, not her. Simples ....................... !!

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I know 3 personally who know what they are up to - and know of several more. But I have to admit - they seem to be in a minority!!!!!

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Maybe if Dr taped up all her muscles with duct tape so tight it hurt and then put her in one of those deep sea diving suits with lead boots and asked her to do business as usual she might get an idea.

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Whoops. Sorry if anyone read pre edited version. 😲

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Poopadoop there is actually a special suit designed to help young people know what it feels like to be old. It weighs you down and restricts your movement, including fingers. I wonder if there's a version which could simulate the range of motion disability of PMR? I doubt it could give an accurate picture of the pain, though. Put the young doctors in the suit and then tell them to imagine they have pain like a headache all over the body. In writing this I remember the first time I was aware of some sort of pain in legs and difficulty moving, and it was when I was on holiday in Egypt in 2007. Was that the beginning of PMR? Might have been, although I didn't get crippled until eight years later. Could it have been an early self-limiting spell?

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Now I think about it I have seen a programme with those suits.

The more I have thought about symptoms i do believe that I had several warnings for at least 2 years maybe longer. I remember about 9 years ago trying to walk and feeling like in treacle and fatigued. It's hard for me to make distinction between problems with fibromyalgia degeneration of spine etc and diabetes. At The moment its the "deathly fatigue" that's digging in. Even wrapping Xmas presents has pooped me. Maybe that's why poopadoop. 😉🌲

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I've used scarves as wrapping cloths for several years. But only for family who give them back to me for next time. Saves constantly looking for the tape and the scissors which always hide. And eliminates all the waste and tidying up later!

env.go.jp/en/focus/attach/0...

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Great idea!

I am usually there for bulk of presents so could reclaim scarf there and then.

I used use glitter pens and lots of coloured papers and draw designs. Last two years basically thrown them at paper and sellotape spirals and hope they stick!

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Luckily - bank transfers don't have to be wrapped...

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They happen - even in GCA if you read that article by Dejaco.

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Hi Heron, I have seen suits to make you very fat and also some system to simulate emphysema. As you say the problem is simulating the pain.

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Make them tight enough and make them wear it for a few hours - they'll get the pain!!!!

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Good idea, I will have to design a PMR pain simulator!

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You could make it fairly easy to put on and then pump it up with air.

Remember to find a way of simulating their arms not being long enough to reach their bum when sitting on the loo...

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Also have large pebbles under the feet.

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And for the women you can't do up your bra.

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piglette : Mixed with broken glass...

HeronNS - and have to lasso your foot with your underwear. Forget socks....

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I like the broken glass idea. I suppose you could have one of those electronic gadgets that give bursts of pain too.

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I love this group...crazy!

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All over? And can it also do hot flushes?

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I will have to think about that one.

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I saw it!!!! Not here - on the notification!

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Very good!

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Both my hospital rheumatologist and private GP are united in the way prednisone is tapered. It has to be done very slowly, giving the body and adrenals a chance to recover. When I was on 10mg, it went down 1mg per month. Now on four. No problems. The auto-immune disorder (GCA) is no longer a problem, it's just a matter of coming off the drugs.

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Sounds very similar to my situation has I was diagnosed January 2017 and followed the plan set out starting on 15mg for 4 weeks reducing to 10mg for 4 weeks the reduced by a 1mg every 4 weeks down to ring started to get symptoms back although not has server has before but none the less pain was returning so doctor has decided to put the predesolne back up to 15mg and reduce has before.

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Sorry you're having to start over.

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Hi klaroche, I travel to another Yorkshire town to see my Rheumatologist, who is a leading light in PMR and GCA. It is better than wasting your time with a local one who knows squat diddly and has all the sensitivity of a lump of rock.

I seem to have accumulated a lot of Pred as I’ve tapered on my own and haven’t changed the prescription. It makes me feel safe to have enough for a GCA crisis, God forbid.

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I need to stock up on more so if I'm in this predicament again I'll be able to do as needed. Thank you everyone for your comments, sense of humor and support.

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Klaroche, we seem to have hijacked your thread! I hope you are doing okay just now and have a good holiday season. Wouldn't it be fun to expand the jocular part of the thread, where we are talking about helping young docs to understand what PMR really means, and get it published as a humour feature in a rheumatology newsletter or journal?

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You can hijack my thread anytime...I love to laugh and anytime we can smile is a good thing. Love this group! I wish there was a way to help the doctors understand our pain and dilemma, the comedy helps.

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