Go still not happy with tapering schedule - PMRGCAuk

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Go still not happy with tapering schedule

Rosshigh profile image

Just been to gp for blood tests and told him I am using a tapering schedule as have tried to reduce twice before. He is still insistent I should be down to 5mg in a year. I told him about this website and other people's experiences and it's more about my quality of life. I will try to reduce but want to do it slower than he would like.

36 Replies

Need a little more info please.

Are you still in pain? Has it lessened since you started your pred of 15mg?

Rosshigh profile image
Rosshigh in reply to jinasc

Within hours of taking 15mg pain was virtually gone so he reduced me to 12.5mg after 3 weeks but pain in legs came back.Out me back on 15mg for a week and then down to 13mg but same thing. I started DorsetLady tapering schedule reducing by only 1mg and now on week 2. So far ok but want to carry on with that.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Well unless he’s got a crystal ball, he won’t know the state of your PMR in that timescale....so it’s not really what he wants, but what the PMR dictates. It may say in many sources that it only lasts 2 years, but most add the rider - that not in all patients - this is just one from arthritis foundation -

Polymyalgia rheumatica (PMR) is an inflammatory disorder that causes widespread aching, stiffness and flu-like symptoms. It is more common in women than men and is seen more often in Caucasians than other races. It typically develops by age 70 and is rarely seen in people younger than 50. PMR may last from one to five years; however, it varies from person to person. Approximately 15 percent of people with PMR develop a potentially dangerous condition called giant cell arteritis.

This is from NICE - please highlight final sentence -

cks.nice.org.uk/topics/poly...

Rosshigh profile image
Rosshigh in reply to DorsetLady

Thanks DorsetLady as I am trying your tapering schedule. I am so grateful that I found this website as I knew nothing about Polymyalgia before I had the horrendous pain and stiffness. Was diagnosed eventually at the end of January by seeing another gp.

PMRpro profile image
PMRproAmbassador

Hand him a copy of this paper from a group that has forgotton more about PMR than he's ever known:

rcpe.ac.uk/journal/issue/jo...

and these

medpagetoday.org/rheumatolo...

practicalpainmanagement.com...

articles about work done at the Mayo Clinic in Rochester. They found the median time to 5mg was 18 months - and that is for only half of patients.

Every taper in the medical literature emphasises that the tapers should be individually adjusted to the patient according to signs and symptoms. PMR doesn't get the memos that it only lasts 2 years and only needs 5mg - because it doesn't, and it doesn't. Every patient is different and some need more than others.

Rosshigh profile image
Rosshigh in reply to PMRpro

Hi folks tried to show him tapering schedule this morning and told him about the website but he just didn't want to hear it but I am going to stick to what I am doing at the moment.

Mary63 profile image
Mary63 in reply to Rosshigh

I would change to another GP

Rosshigh profile image
Rosshigh in reply to Mary63

It's difficult as to who diagnosed me has retired and she referred me back to him but I will carry on meantime and see how it goes. Thanks for your reply

Rosshigh profile image
Rosshigh in reply to Mary63

Sorry meant gp!!

PMRpro profile image
PMRproAmbassador in reply to Rosshigh

The tapering schedule from here is patient-developed. The links I've given you are from medical literature and aimed at GPs so he shouldn't find grounds to whinge about interfering uneducated patients.

Rosshigh profile image
Rosshigh in reply to PMRpro

Thanks again. I agree but he seems to fluctuate from being helpful one time and then can't get you off the phone quick enough the next time. I will print it off and give him it the next time I am in for blood tests though. When I get a phone consultation he is the one that phones me and with covid it is difficult but thanks again I very much appreciate your knowledge and help.

Do exactly as PMRpro has said, print them off and hand them to him.. If he is 'miffed' change your GP.

Always remember your body, your decision when you know all the facts.

If you are able to have a guaranteed supply of pred in appropriate-sized tablets, as you currently have found a tapering method which is working (you tried his way twice and it was a failure) I'd say carry on and ignore him until you can find a more patient-centred physician.

Rosshigh profile image
Rosshigh in reply to HeronNS

Thank you for your advice. He has given me a good supply of different sized tablets and I am just going to carry on with the 1mg tapering over 5 weeks and see how I feel. As I said I couldn't bear to go back to how I felt before. Thanking all for the support.

You've got to convince Doc it's not one size fits all. I am really lucky doc is letting me self medicate.. He wants to be kept.in the loop , but I think because this is my second dose of pmr I'm possibly a source of info as well.Order my pred on line and its never questioned. I have other issues related to have taken pred.long term that are monitored constantly.. Jim

Rosshigh profile image
Rosshigh in reply to jimcarlow75

Thanks Jim one time he is fine and the next he changed his mind but I am going to do the same as yourself and self medicate and keep him informed but I will try to reduce as much as I can. How long have you been on steroids and what level are you on?

jimcarlow75 profile image
jimcarlow75 in reply to Rosshigh

I am on 22 at the moment, having given myself a 5 boost as I was feeling like s-it.a while. First time I had pmr was 20 years ago and it lasted about 8 years. I was about 54 years old. So around about 62 when it suddenly went. Then mid 2019 I new it was back. God knows why, by then I am 74. I decided that quality of life is paramount. Bit difficult as I have other issues of back and leg pain and its not easy to distinguish between the two.. But , you know when you've hit the spot cause you feel so much better in yourself

Rosshigh profile image
Rosshigh in reply to jimcarlow75

Sorry to hear that Jim it's good you can decide what you need yourself. 8 years is a long time though but as you say it's quality of life that is so important, especially now in our 70s.

jimcarlow75 profile image
jimcarlow75 in reply to Rosshigh

My thoughts exactly , my family are not so long lived and I'm damned if I am going th live in pain etc for the rest of my years..Jc

Rosshigh profile image
Rosshigh in reply to jimcarlow75

Definitely. Life is short enough

Those doctors treat us as if we are morphine drug addicts...as if we would nt want anything else than getting rid of PMR....who wants a drug that gives you osteo porosis and catharacts!? Increased stress is absolutely not what we need...yes, I realise you guys already know this all......

Rosshigh profile image
Rosshigh in reply to Kaaswinkel

Yes you're quite right. We didn't choose to have PMR and take steroids. Any other illness you just get handed pills to take but reducing dosage makes PMR very stressful to deal with.

ChinaWuntoo profile image
ChinaWuntoo in reply to Rosshigh

I agree. I am fortunate in that I have managed to develop a good relationship with my GP. He likes to feel 'in charge' and I never directly challenge that. Over the last 15 months or so I have fed him information, including the Dasgupta webinar (don't know if he watched) and this seems to have built some rapport as well as informing him about PMR. I never tell him what to do, but put my requests in the form of questions (sort of!).... "do you think it is ok to do such and such"? (My latest was this morning about another health issue. )

I'm also fortunate in that somehow I have built up a supply of 1mg Preds. Whether this is because my GP did not follow my detailed tapering suggestions fully or because he deliberately prescribed spares, I don't know. But the end result of having over 100 1mg tablets spare means that I have sufficient if I get a flare. I know he doesn't like paperwork so perhaps he's not good at maths either.😀

Incidentally, as I've said here before, I find young, recently trained doctors are far more likely to know about PMR/GCA

Rosshigh profile image
Rosshigh in reply to ChinaWuntoo

Yes I think you're right that young doctors may be more aware of PMR than older doctors. I asked my gp if he had any emergency steroid cards and he said they didn't but to ask receptionist who had never heard of such a thing!!

ChinaWuntoo profile image
ChinaWuntoo in reply to Rosshigh

My GP said I didn't need one - so I got it from the pharmacist. The new one is downloadable which I did yesterday. You do need to carry one, of course. I also have one of those necklace things with a note inside - also says I wish to donate my brain (but not before I die!)(some might say I've already done it).

Rosshigh profile image
Rosshigh in reply to ChinaWuntoo

Haha feels like that some times!! Will ask pharmacist when I go later today about card.

Why dealing with a GP? Suggest interviewing Rheumy’s for their philosophy with dealing with PMR and tapering. It’s your body, not theirs. I’m at a point I do what works for me. If I’m not where my Rheumy thinks I should be, oh well. Had a flair, sorry (not a lie, an embellishment). BTW I need a refill for ?? mg tabs of Prednisone.

Worse case, he’d refuse the refill and I’d search out another doctor. I make sure I have enough Pred to last me a month so I’m not worried. Highly unlikely they’ll refuse, they like your (insurance) company’s money.

The fact that it is this GP that is always available has me thinking that no one else wants him either! But perhaps that is just me being cynical in my old age!! If you don’t get any joy with him , as others have said, try another GP. X 💐

Rosshigh profile image
Rosshigh in reply to Jackoh

Thanks. I would change but it is very difficult during covid.

Jackoh profile image
Jackoh in reply to Rosshigh

Do you mean it’s difficult to change GP within the practice or change to another GP practice?

Rosshigh profile image
Rosshigh in reply to Jackoh

You don't get a choice when you phone surgery as you cannot specify who calls you back and it is always him that calls because he has been dealing with all the tests etc.

I wonder if you asked for another doctor, if you have a list under their website of all the doctors in the practice, they would ask that doctor to ring you. I do ask for a specific doctor although I think they would give me anyone. The results are on the computer for all to see so not difficult for another GP to see and comment on them. Sometimes a fresh eye looking them over is a good thing too. You could have a go as an experiment to see if that works? I had a particularly difficult GP in the practice where I used to live. I used to really avoid her when I could. I think the sentiments were mutual! 😂x

Rosshigh profile image
Rosshigh in reply to Jackoh

The doctor who was excellent and actually diagnosed me with PMR has retired and receptionists insist you cannot ask for a specific doctor so tricky but as I said the go who did tests always phones me. If things get back to normal I hope it would be easier to see someone else. I'll see how it goes. Thanks for the support.

Jackoh profile image
Jackoh in reply to Rosshigh

👍x

Hi Rosshigh, sorry your GP is trying to push you at a pace that you know is not right for you.Mine - who’s been brilliant since diagnosing me instantly - tried to get me to go from 5mg to 4mg recently, as the blood results continued to look good and I’ve hitherto done 1mg at a time, and I had to push back a bit as I felt it was too big a jump. She’s worried about my bones. She caved in though and agreed my suggestion of 4.5mg!

Your doc cannot force pills down your throat; you are in control. And we’re right behind you!

On the subject of talking to a different GP, surely your surgery lets you at least ask for a lady doctor? You should not have to tell the receptionist the reason for your appointment so they won't know that it’s not actually something you might feel modest about.

Rosshigh profile image
Rosshigh in reply to ImC_

Hi ImC thanks for your reply. Believe it or not our receptionists ask why you want to speak to doctor!! It's a nightmare getting passed them at the best of times but during covid even worse. I will need to wait until things are a bit more relaxed and hopefully will be able to do that.

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