I had a telephone appointment with the GP today, I said as i will have been on 15mg for 3 weeks on Friday, I would like to go down to 12.5mg, so would need some 2.5mg tablets.
He downright refused and said I have a blood test in 3 weeks and he will look at that and then decide what to do next.
I told him that the pred had worked within 5 hours and took all the pain and stiffness away, which has stayed away, so why can i not start reducing and try it out.
I was told that I needed to listen to a professional and go with what he said. It ended up with me losing my temper, which is very easy on pred and saying I thought we were supposed to work through this together.
I have called the surgery back and asked to see another doctor, but cannot get an appointment for 10 days as its not an emergency.
Any suggestions what I should do?
Oh he also said that the tapering strategy of 4,1,3,1,2,1, etc, doesnt work and he will not support it!
Any help gratefully received. At the moment, its made me so disheartened that I might have to put up with this battle for years.
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worrier62
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I am not sure if I understand, what is your GP suggesting you do? Stick on 15mg for six weeks? What type of tablets do you have, are they enteric coated or can you cut them? Why not stick on 15mg and see a new doctor in 10 days?
If he is suggesting you say on 15mg for 6 weeks in total - then that sound reasonable - most try to reduce their patients too quickly. In fact I personally think patient should be on 4-6 weeks initially.
Oh he also said that the tapering strategy of 4,1,3,1,2,1, etc, doesnt work and he will not support it!
I presume you mean 4 days old dose, 1 new etc - as in the DSNS, and how does he know it doesn't work, there are plenty on here who would say it does.
Just stay on 15mg util you see another GP.. and you might be pleasantly surprised to find the longer at the higher dose stands you in good stead for further down the road.
Why quick taper... see you started on 15mg initially and then up to 20mg.. is it because they don't think it's PMR. You did mention seronegative arthritis - any update on that?
Are you familiar with the FAQs? Not only is there a section about tapering that explains DSNS but there is also a post somewhere about abbreviations we use a lot on the forum which you would probably find helpful. Knowing what is in the FAQs is very helpful day to day.
Maybe just stay on the 15 mg and see what he has to say. It might turn out okay and it gives you 3 weeks to just let it all go and think of something else. One problem is, doctors in the same surgery are going to back each other up so you will probably get the same answer from doc #2.
"Oh he also said that the tapering strategy of 4,1,3,1,2,1, etc, doesnt work and he will not support it!"
I assume you mean the days between new doses in DSNS by that? He really should take a poll before making sweeping statements like that! Very few here who have used it who have failed. And I seriously doubt he has ever used it. Prof Sarah Mackie in Leeds, an acknowledged PMR expert used it in a clinical study and approved it as an option that patients found very helpful.
But sticking at 15mg for 6 weeks is a very good move and may stand you in good stead. Something most of us would support. Most doctors are too keen on reducing hell for leather!! See your other doctor and see what they say but they may well refuse to disagree.
Nothing new there! What could a patient POSSIBLY know ... But actually - he is doing what used to be done and which quite a few here will support as having worked for them while we see many newer patients being rushed to reduce and getting into trouble.
Many of us have been very worried when first diagnosed with PMR and have experienced a grief reaction for the loss of our previous better health. It isn't unusual to be angry about what's happening to us and that can spill over if we feel the people who are caring for us aren't listening. However, do try not to "battle" with your doctors, as you may be in this for the long haul and need them on your side. Having said that, over time, they may learn a lot from you!
I am fortunate that my Rheumatologist is Sarah Mackie, who fully approves of the DSNS taper and prints it out for her patients. I showed it to my GP 7 years ago and he was really interested.
PS As long as your prednisolone are uncoated, plain white tablets, you can cut them when the time comes for 12.5mg. That's far cheaper than having 2.5mg tablets - a 2.5mg uncoated tablet is 10x the price of half a 5mg!
I just started DSNS for 4mg getting to 3mg and may stay at 3 through rest of year. Summer is very busy and we have a big Europe trip planned this fall. Then we roll into the holidays. Lucky to have a great GP. He is always hearing about what the UK people do. He said I know way more than him so thanks to all of you. 🙏
Agree with Rugger on the 0.5mg reduction suggestion… if possible with your tablets. If not, you can always slow down any taper by repeating each stage…. more than one way to achieve your aim.
As my mother used to say.. no point getting older if you don’t get artful with it! 😊
do not despair. I had pmr for 5 long years. Diagnosed by consultant- charming whilst seen privately. At end of year when private cover ended he reverted to his true self. He dismissed my concerns his registrar shouted at me look at yr moon face why are you on 10 mg??
Eventually learnt to manage it myself.take the leaders on here advice - they are great
That's not good enough. jinasc of this forum had a registrar tell her she'd have no knee pain if she lost weight! jinasc told her to leave and send her the consultant in. He dealt with the registrar and I doubt she was ever so tactless again. She'd obviously not read the notes ...
You are left to wonder sometimes aren't you. I was a student in 2 medical schools - as a species, they didn't impress me then and don't impress me now.
My dad died I went home for a week then went to guildford for last part of my certificate training.
Arrived at dept Monday in mammo- conveyor belt she was waiting for me and criticised me all morning. Each training meant refinement of yr method. At end of am I howled like a dog for an hour.
Left as soon as had certificate but more trouble
For first time ever she had given me a bad reference! Couldn’t get a job..9n my own with 2 girls.
Eventually wrote to K e v11 London took me and was allowed to do mammo for an hrs!
What a cow,, bumped one day into doc living near .He said my dear we felt so sorry but she had ruled for so long and our head radiologist was a buddy of hers!
I always thought you weren't allowed to give a bad reference. My daughter is doing endoscopy as a nurse specialist and one of her mentors is one of those who think constant criticism is a good training method, The other two she does a lot with in their clinics tell her when she gets something wrong but also give feedback for alternatives that might work and prasie when it goes right. It is like skiing - suddenly you do something and think, why did I find it so difficult ... In the Super Mentor's clinic last week something clicked - and was still in place for the Misery Mentor clinic a few days later!
I agree with the above about staying on 15mg for 4-6 weeks. I dutifully dropped to 12.5mg after four weeks, after feeling great on 15mg. This was after emailing the doctors to ask about staying on 15mg for longer, as I was due to be going away twice. I had a terrible time, very unwell, away from home for four weeks, incl Xmas/new year etc. On return, I spoke to the gp who’d diagnosed me two months previously and she agreed I needed to go back up until I stabilised my system. After a few days on 13.5mg, i had to go back up to 15mg again for another few weeks.
We had a review phone call and I then had a similar experience to yours, very upsetting experience with her about tapering etc. She got very defensive aggressive and kept talking about well researched clinical trials etc. I didn’t tell her I used to be an NHS researcher, so know all about the pitfalls of clinical trials! I tried to keep calm, but I was boiling inside and very upset. As someone said in reply, there is a lot of grief around when we can’t do what we used to. Also, with doctors, many people get very upset or angry, as we are so vulnerable when we are unwell and can feel like a child, even though we’re normally very competent adults. I even felt abandoned by this gp, as she said I was doing ok (after agreeing to a very short tapering schedule) and I’d have a review in a years time unless I was worried. She even wrote in my medical notes that she recommended I listen to medical advice rather than this forum!
From that point, I booked a phone appointment for weeks in advance with my registered gp and a face to face appointment with another gp in the surgery, just in case I needed it. My registered gp was much more open to tapering. She too was keen for me to drop to 12.5 asap, but took my point about nit wanting to yo-yo from 15 to a lot lower and back again, repeatedly. I’m going for the face to face appointment tomorrow, as I am now tapering , by a mere 1mg over 4-5 weeks and have had some symptoms I want to discuss along with other stuff about medication interactions,. So I’ll get another perspective on tapering!
I wish I’d known about Prof Sarah Mackie. I’ll mention her tomorrow!
Probably unwise to disagree with the GP. I would suggest that you request a referral to a Rheumatologist. The GP will follow the generic NHS protocol for PMR, built over years and years of cases and on medical expertise. But the Rheumatologist will have more in-depth expertise, know how and experience. Treating a condition like PMR is very challenging as it is not the root cause but only the symptom of something that has gone astray and deteriorated. Plus, currently all you get is relief from symptoms with some pretty damming downsides that come with it. Listening to advice from fellow sufferers and others is excellent as it is a reference and perspective but in the end it’s a medical doctor that should be treating you, always in agreement with yourself, and with the benefit of full knowledge and understanding of your overall health condition.
If you listened to the others on this forum you would know that often good GPs are infinitely preferable to a dismissive rheumy because it is the GP who sees the patient as a person and how they are affected in their day to day life. Many rheumies think PMR isn't a real disorder and goes away quickly - so they aren't interested in those patients.
I will agree that "but in the end it’s a medical doctor that should be treating you, always in agreement with yourself, and with the benefit of full knowledge and understanding of your overall health condition." - however, there are a lot of doctors who don't know all about PMR because they aren't interested, regard PMR patients as a nuisance and don't listen to them or seek their side of the story. And it is for their patients we are here.
If you are so dismissive of patient experience - why are you on a patient-led forum at all?
That’s totally incorrect and out of order … if you’d been on this forum for as long as many others you’d know that.
Think you have a rose tinted view of PMR and medics.
Just because your PMR journey was simple, straightforward and quick in comparison to many, please don’t assume everyone’s is . If that were the case this forum wouldn’t be required.
Most people are here either as new patients to find out about their illness because their doctor hasn’t given much information-or because they are struggling over a long period with it and their medical team.
We don’t say go against the medical advice -but we do say there may be a difference approach -so think about it and discuss with doctor. Unfortunately some doctors don’t like that so life becomes even more difficult.
I agree having spent years learning their trade doctors shouldn’t be ignored but no matter how many textbooks you read it doesn’t replace having the disease yourself and that’s unlikely with PMR/GCA.
The good ones however do listen and learn from their patients.
I have always appreciated to read your advice and input as it is balanced and knowledgeable. I just don’t think we should be taking out our frustrations on GP’s and Rheumatologists. Of course they are fallible, like some of us! But at least in this country they are the way we approach and try and resolve our illnesses. For some, it will work out better than others. But it’s not necessarily only because of the Rheumy or the GP! It’s the nature of this illness. I can also understand that long term sufferers will be frustrated that they could not be helped out of this condition. But a generally more encouraging, supportive and positive approach, especially to newcomers, I think is a better proposition and should be part of an inclusive forum, as opposed to relentless thrashing of Rheumatologists and the NHS in general. I do not buy that, as they do a wonderful job for millions of people, but they are certainly do not have a magic wand to resolve everyone’s problems, especially when the cause of the problem is not known.
But a generally more encouraging, supportive and positive approach, especially to newcomers, I think is a better proposition and should be part of an inclusive forum, as opposed to relentless thrashing of Rheumatologists and the NHS in general.
I would say we do have an encouraging supportive and positive approach… at least that’s my take on the vast majority of responses. .. and certainly is my intention, along with many others.
But, it is also a safe environment for those who feel let down by their medical team to express their frustrations.
If you had read the number of posts and replies over the numbers of years that PMRpro and I have, you would realise how much help and support is given to all members.
I agree you do that (as an ambassador should) and that most people on the forum are caring, have empathy for each other and provide very useful information based on their personal experiences. Good outcomes should be celebrated not frowned at! Good outcomes also provide, in the least, as good a reference as bad or unresolved outcomes, especially when outcomes are so randomised. I also know you never discourage people of seeking medical help and guidance and I applaud you for that.
Not sure why you think good outcomes are frowned upon, I wish more ‘past’ patients would stay around and show that life does go on with Pred/PMR/GCA and especially afterwards… but many don’t.
I have learnt a lot from the forum, mostly from everyday contributors… it provides a very important reference for my own unique trajectory. If I have a good outcome I intend to stick around, and keep the doomsday preachers in check!!
My rheumy knows very little about PMR and GP even less. Rheumy's ego is bigger than her fount of knowledge. Without this group I would have been completely lost over the past 2 years. I knew absolutely nothing. We are so fortunate to have knowledgeable, wise folks who have actually been through the pain and suffering of these diseases.
Like anything in life there are Rheumies and Rheumies. But, unfortunately, knocking them incessantly in not of any help to anyone! In this country we depend on GP’s and Rheumies to help us. The forum is great, and hence why we are in it but this needs to work in tandem with the best medical help we can get.
In Nova Scotia, Rheumatologists are at a premium. Unfortunately that doesn't make them any better and when one relies on the "healthcare" system and not their own amassed fortune at age 73.95, we're pretty much stuck with what we get...if we get. You're not wrong about our forum working in tandem, but we've never said otherwise.
I had a gp who had me reducing by 2.5mg from 15 as the 5mg tabs have a groove in them making them easily splittable. Got to 10mg ok. But at the point of reducing to 7.5mg I had a different GP contact me re the blood results. His approach was all about how I was feeling rather than the bloods. He also advised he reduces by 1mgs not 2.5. we ticked along quite nicely to 5mg when I had a referral to a hospital rheumy. The rheumy declared I didn't have PMR and I was to reduce by 1mg every week until zero then return for blood tests. OMG what a wake up that was. I got to 3mg, felt dreadful, got bloods done at GP not hospital. My ESR was the highest it had ever been. I called GP and told them I was upping my dose immediately. GP was ok with that. Ended up back to 8mg and am now using DSNS. Currently at 6mg. Rheumy still insists it's not PMR and that I may not have the smouldering multiple myeloma the haematology dept diagnosed me with! He also wants to put me on methotrexate. I said no. He made an appt for when I got to 5mg for the morning cortisol test (on his schedule which was several weeks ago). I cancelled and told him I'd make the appt once at 5mg and no I didn't know when that would be. I think he's probably given up with me now..thank goodness for supportive GPs who are happy to prescribe 5mg and 1mg tabs to allow me to reduce by 0.5mg at a time.
I'm not sure who's more dismissive of who! He does tell me that he has discussed me with "the team" and they think it's not PMR. I'm doubting he has discussed at all. The knowledge from everyone on this site has given me the empowerment to challenge the so called experts and do this MY way.
Doesn't show any of them in a good light. None of "them" have seen you at any stage so are talking about an illusion - that of the somewhat biased rheumy. And he is VERY unprofessional disputing haematology's diagnosis - not his field even as an onlooker. Hope your good GP hangs around for you - because HE has it right: treat the patient in front of you.
Sounds like my rheumy to the T. I'm stuck at 12 mg. She wants me at 9 by now. Always great anxiety when I'm due for my 3 month follow-up, but you can't reach her in between.
I wasn’t sure whether the 15mg is with a new diagnosis. I agree with all of the above. I couldn’t wait to lower my dose and get off them, but PMR wins in the end. Strap yourself in, prepare for the long haul, 3 wks is not long really.
Probably the drop was too much. That is more than our generally recommended 10% taper when in the low dose range, although some people seem able to manage it. Can you get 1 mg tablets and taper by 1 mg?
Three weeks is very short. Be glad to stay where you are for a bit, let the Pred work. Too many of us are rushed to get to zero by our medical practitioners, only to end up in flare or yo-yoing. Even 1 mg. has an immense impact on the tapering process. When it's time, cut your 5 mg. tabs in half if they are scored in the middle. Otherwise they can't be cut. The DSNS works! Slow and steady.
It is great having such a rapid and complete remission of all the symptoms isn't it? But it does take time for the actual inflammation to be all cleared up so your doctor is wise to tell you to wait for the bloodwork to be done. After that it's still a good idea to let the doctor take the lead for a while. When first diagnosed and set on the pred path my doctor actually told me that eventually I'd have a lot to say about the taper, although at the time I was so ignorant I didn't really understand what she meant. I did so well in the beginning weeks and the initial taper (which was to 14 from 15 and then weekly 1 mg drops to 10) that I really believed I'd be done and dusted in three months! Didn't know that pred wasn't a cure. However you will most likely be given more control over the rate of taper after your dose is initially successfully lowered with doctor's guidance. As has been said, many people on the forum have suffered from the exact opposite: doctor's enthusiasm to taper patient too quickly and/or in too large steps.
I always find it good to approach doctor with a question, "What do you think of this?" for example. Then I'm making it clear that I'm part of the team that s/he is also part of, with a common goal of making me well. I discovered slow tapering methods when I was at about 10 mg, showed them to my doctor and said I'd like to try one. After looking at them she said yes. But secretly I was going to use one of them anyway, even if she'd not agreed it was a good plan 😆😉
Is there a reason that you are not happy with staying on the 15 mg dose , is it because of side effects ? Most of us did find the high dose side effects very frustrating to say the least but actually probably would have benefited being on a higher dose for a few weeks longer at the beginning of treatment rather than rushing into a taper to help give the body extra recovery time before having the stress of tapering.
You can always choose to see a new GP or Rheumy after the extra two weeks on a higher dose and take them the information about the slow taper and tell them that as it works for many patients , and is supported by the PMR/ GCA charity that that is the method you want to try and will be happy to do. Remind them that your treatment needs to be a partnership and you don't want to feel that you have to go through stress at appointments and in phone calls while fighting to be heard.
I might be misunderstanding something here, but to me that sounds like a great GP. Instead of making you reduce accordign to some arbitrary schedule he wants to do more bloods to make sure things are under control. We so often get the opposite story on here of patients being made to reduce too soon or too quickly so to me this sounds refreshing.
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My appointment with Dr Wow
My GP visit
What my rheumy said yesterday - you may not like this!
Still problems with tapering
Upset
