In December I posted a discussion I had with my Rheumatologist regarding a sensible pred taper plan. I had been on steroids for 2 years, initially for GCA and then PMR and for the previous 9 months had been up and down with flares and pred dosages. I then discovered your Forum and devised a slowly, slowly taper plan - reducing by 0.5mg every 2 weeks. I started on 20mg and I'm now down to 15.5mg without any flare problems. The Rheumatologist did not agree.
I saw my GP in early February and updated him on how my PMR was progressing. Before our meeting, I sent him some information regarding recent studies on steroid side affects (Matteson, 2017). I asked if he would agree my reduction plan but he said he could not go against British Rheumatological guidelines However, he said he would seek advice. I received this response last week.
QUOTE
"I promised I would get back to you about our discussions recently with regard to steroid reduction and I have taken some legal advice on this.
Unfortunately, their legal advice is quite clear that the British Rheumatological guidelines are the Gold Standard for management in the United Kingdom and indeed many other countries have similar guidelines about steroid reduction. Steroids are not a zero-sum drug and are associated with significant short to medium and long term consequences for patients.
The studies you quoted of course cannot be completely dismissed, but they are out of step with most other highly powered studies published in peer reviewed journals which form the basis of the British Rheumatological Society guidelines. Allied to that, GMC guidelines are quite clear on deviation from accepted practice and it would not be possible for me to to sanction that without being in breach of these guidelines Obviously I cannot prevent you from pursuing the course that you wish to pursue, but I cannot condone it at the same time.
I am sorry I can't be of further consolation here"
UNQUOTE
I've looked on-line for any more recent studies regarding PMR/GCA (apart from the Matteson findings) but there doesn't seem to be anything more recent than 6 years ago. I believe that Kate Gilbert is working with others to update guidelines. I also believe that some Rheumatologists and GPs are coming round to the slowly, slowly approach to pred reduction plans but can't find any articles on this subject. One thing I do know is that the people who post, and reply to posts, on this Forum are overwhelming in favour of a slowly, slowly taper plan, especially if they have gone through a long yo-yo period. Does anyone have any recent information?
As you can probably guess, I'm continuing with my taper plan and will probably reduce even further with the dead slow and stop plan.
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"he said he could not go against British Rheumatological guidelines"
Really? Funny how the usual response is that "guidelines are just that, guidelines..." - i.e. I don't have to obey them so I won't (always supposing they have ever read them in the first place!)
The guidelines themselves do not lay out a reduction plan in stone - ALL of them say something along the lines of
"Recommendation 4: (PICO 6) The panel strongly
recommends individualizing dose-tapering schedules, based on regular monitoring of patient disease activity, laboratory markers and adverse events."
Unfortunately - some doctors appear unable to read.
is a link to the 2015 International recommendations. A very large number of rheumatologists deviate from a few of the recommendations in the drugs they are using. Some work, some don't.
And the Dead Slow Nearly Stop approach is currently being used in a clinical study in Leeds. So there...
Many thanks for your support PMRpro and all you other PMR sufferers who have replied to my post. I will reply to my GP with some of the information - emphasizing the word "guidelines" and the fact that different suffers require different dosages and taper plans. I don't think he would restrict the pred prescriptions but maybe I should build up a wee standby store!!!
Maybe everyone on the forum should seek legal advice for the often negligent mistreatment they have experienced. It's quite clear to me reading the guidelines that they leave wiggle room in individual treatment plans. I am fully aware that there MAY be short, medium and long term effects but persistent pain, inflammation , stress and anxiety also have their effects. If I had a raspberry emoji I would blow it.
As PMRpro has made clear, they are Guidelines and not set in stone.
The Oxford Dictionary of English states:
Definition of Guidelines:
"A general rule, principle, or piece of advice".
I have found on this forum and two other forums, over the past 10 years, that people when giving out advice or just imparting information have always made clear, in some form or another..........that they talk to their medics and then make their own decisions.
If patients find out something that works for them..........well it is their illness and their decision. The best medics are those that work in a team, you, your body and your illness.
Ordinary people do not treat anyone like Gods any more.........the 1944 Education Act knocked that one on the head.
Saw my doctor this morning, she said do it at whatever pace is right for you........no wonder us patients are confused, a foggy head is enough, but after a few years, we know what's right for us and do it our way!
If you stuck religiously to THE taper and achieved 0mg of pred......what use if you’re still in pain, stiff, and cannot function? You’ve still been liable for all the side effects with no gain.
There is absolutely the individualisation required for any drug based on effect and side effect.
The litigation society has doctors caught, but I think his second to last sentence is telling.
We probably don’t all have the same disease. We have some similar symptoms. We don’t all start at 15mg. If they could tell EXACTLY what the cause was, I’d be more interested in a specific dictatorial management/cure. Do they weigh us and calculate steroid dose? No! Do they look at our working commitments? Do they look at our environment? Are we carers? What’s the weather like? How supportive (or not) are our doctors, families? Sooo many variables!
Ah well! A titration (for pain relief) can only be achieved if the professional knows what they’re talking about, can think outside the box, and is reactive to patient accounts of THEIR symptoms.
A titration for....eg warfarin, it’s based on INR results, but no one is going to ignore massive bruising and daily nosebleeds. Well, they might but at their peril.
Morphine. Addictive, absolutely. But if titrated against pain, not so. Which is why syringe drivers under control of the patient who experiences the pain are so important. I’ve nursed people on MASSIVE doses of opiates, and when they’ve got over whatever ordeal they were going through, they have not been addicted. Taking morphine without appropriate pain is what leads to addiction. The one (pain) balances the other (drug). And this is why we need ‘pain teams’ and hospice specialities.
I admit that the legal and medical systems in USA and England are quite different, but if you can sue them for prescribing too much pred, you can also sue them for the permanent damage from uncontrolled inflammation.
Try that threat next time someone tries to palm off their medical responsibilities....
From your post it seems you get on quite well with your GP. If this is so, then he has an email address.
Me? I would post the link to him and say, please pass this onto whoever responded to your query and ask if they would take the time to respond to patients, some of whom have worked in the NHS for many years and have 1st class degrees in micro-biology.
The reply would be something I would love to see, but then I would love to see pigs sprout wings and fly - some hope.
Yes, I live in Scotland. While your suggestion sounds like a good idea, I don't want to upset the apple cart or create an atmosphere within quite a small GP practice. I sent him a copy of my original post and replies in December. However, I will make him aware of some of the comments by you good people.
I'll continue with my taper plan and keep him informed of progress. If this works, I'll be down to 10mg in August without flares. The last time I reduced to this level (October, 2017) with the NHS taper plan I was in extreme pain but my Rheumatologist just said to take paracetamol and ibuprofen as well as the prem to control the pain!!! I had to suggest I raise to 20mg and then reduce slowly.
Hopefully this will prove that my taper plan (for my personal condition) has worked - rather than the the 20/17.5/15/12.5/10mg I was on before. OK, it will have taken 10 months to reach reach 10mg but, hopefully, I will have had a good quality of life during this pereiod.
Thanks. I'm a member of the Scottish Group and will bring the subject up at their AGM in Dundee in April. I only wish I had found this forum when I was diagnosed with GCA in October, 2015. I would have had a much smoother path with a much better quality of life. Let's hope that the Leeds study comes up with an acceptable pred reduction plan and highlights the fact that there has to be flexibility based on how the patient feels - NOT "thou shall reduce quickly and get off steroids"!!!
For the past two years I have been unable to attend the AGM and this year is another. The lady that started it was invaluable to me when I was first diagnosed with GCA and without her I do not think I would have coped so well. We remain friends. Jean was an inspiration for me.
I had GCA for 5 years and am now at the beginning of 7th in remission.
Thanks, glad to hear that some patients actually make it into remission - and for 7 years - well done. Once you were in remission, were you back to your old self or did you still have to be careful not to do too much . I used to be very active and would love to return to this condition. It would be good to have some light at the end of this long dark tunnel. I'd be interested to know (if you don't mind) what was your taper from 10mg to zero and did you have any flares along the way?
Thank you for bringing this to our attention. This is something that PMRGCAuk has been increasinglying concerned about recently. This is a community of patients. It is not surprising then that the Patient perspective gets a higher profile here. This thread is a good example of that. The "dead slow" method of reduction has been promoted in good faith by people who are very passionate about it, and we are constantly pushing for a proper study to test out different reduction methods. And so we welcome the Leeds study and look forward to the results. We need to know whether such slow reduction is advisable at doses over say 12 mg because of the impact it has on cumulative steroid dose.
As the national charity we have to try to keep a balance and keep a dialogue going with doctors, So we have to understand their perspective too. The toxicity of steroids is documented. Prof Matteson is not saying that pred is harmless after all, and he would be the last person to say that guidelines should go out of the window after a single study. Unlike your doctor, we on the forum don't know your full medical history. So to everyone we say talk with your doctors first. And listen to their concerns.
Thanks for your reply. In your position I realize that you take a broader view of the treatment of PMR/GCA and appreciate that members of this forum are more concerned with how they maintain a reasonable standard of life while balancing pred dosage. My taper plan is a result of the yo-yo plans I had been on over the past 2 years. If you had seen me crawl out of bed trying to adhere to the NHS reduction plan (provided by doctors) you would understand why I do not want to return to this condition.
By reducing slowly I can now quite easily handle a small flare by increasing dosage for a short time and stabilizing things before returning to the original dose. Although it will take me 10 months versus 4/6 months to, once again, reach 10mg it will have been, hopefully, a controlled period with a reasonably good quality of life. OK, so I get fatigued if I do too much in the garden and now have to play golf in a buggy - I can handle these problems!!
I will be attending the Scottish AGM of PMR/GCA in Dundee in April and hope I can meet you for a chat. Hopefully you will be able to update us on the Leeds study.
I endorse your personal decision, don't get me wrong. I do understand the awfulness of yoyoing - it was part of my journey, but at lower doses. The first inkling we had of a dead slow method, by the way, was from a rheumatologist from Austria who was on the ACR/EULAR working group at the start of the decade. He had worked it out with his patients - once they were down to about 12 mg a day. Its for people like yourself who can't get that low that we desperately need to press for alternative meds.
Thanks for your reply Kate. I note that you were on the 2015 European & American Panel and, one of their strong recommendations (Recommendation 4) was to individualize dose-tapering schedules with regular monitoring. Unfortunately, the NHS does not have the capacity at the moment to do this on a regular basis and some of the tests do not paint a real picture of reality.
My Rheumatologist last December, was not willing to discuss my proposal (although she had initially agreed to me increasing from 10mg to 20mg in November). She just kept harping on about the serious side affects of steroids. She said I was the one who was seeking her advice and, as I had obviously decided on my own course of action, there was no need for me to return to her clinic!!!! With my GP also not agreeing (I see his point of view), I feel a bit out in the cold but will soldier on - sob, sob!!!!!
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