Shame GPs insist on 2.5mg reduction every three weeks (this is what the guidelines say) as the side effects are too dangerous and ignore you’re in pain hence back to square one.
Sorry for chuntering but am so fed up of being rushed down my pred dose according to ‘the guidelines’
I’ve even had instructions printed on the script repeat slip to say:-
“ Additional Script Notes:- clinician only to prevent early ordering, ISSUES OF THIS TEMPLATE CANNOT BE PATIENT INITIATED and not patient controlled.”
That’s because I went up 2.5 mg for four days without asking permission as I was in so much pain. GPs have always controlled the issue of a repeat so the above is unnecessary
Had my wrist well and truly slapped!
Why can’t GP’s treat us as individuals with different degrees of illness, different pain thresholds, different reactions to drugs.
Guidelines are just that guidelines amd not rigid rules of one size fits all.
The guidelines are not what is recommended by those who understand this illness or those who live with it.
I don’t really know what to do next except accept 2.5 mg reduction every three weeks. 2.5 is too big a drop at a time for me and has been since diagnosis. I’ve asked for 1 mg tabs several times but told no. We go to those once you reach 10mg dose 🙈
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They give you these potentially horrible drugs then penalise you when they work. I agree with you entirely. I also fail to understand why they don’t have the same anxiety about Alendronic Acid and similar and Tocilizumab, these side effects seem equally concerning, particularly the bone protecting ones that they practically force down your throat. I don’t know what you can do, my Rheumatologist gives me a lot of autonomy about my Pred dose. To leave a patient in pain is negligent in my view. I have joined you in the chunter at least. I wonder if you could stagger the 2.5 drop over the 3 weeks? 1.5 mgs drop over 10 days then 1 mg the following 10 days.
My GP will only prescribe 2.5 mg amd 5mg until I’m down to a 10 mg daily dose then with reduce by 1mg a week till I’m in no pred (10 weeks) and refuses the 1mg until then.
OK - she has no more idea how to deal with PMR than the doorpost - from 10mg it is 1mg PER MONTH in PMR. So whatever guidelines she is quoting, it isn't for PMR or GCA>
This is a link to a paper written by a top PMR/GCA group in Bristol UK and aimed at GPs to help them manage their PMR patients better:
and she is still using this taper approach. Which is aimed at a MINIMUM duration of 2 years. NOT the well under 20 weeks your GP is orientated on. I don't think it is in that paper but in the medical literature there is mention that a taper of more than 1mg per month is predictive of flare. Your GP is wrong on so many counts and if she won't take advice from the real experts you are better off out of there.
PMRpro, I have just moved surgeries after 45 yrs of happy brilliant treatment as they were taken over by another practice and the service is now dire. All our surgery staff left, retired or found other posts as they couldn't work with the new lot and their standards of care. Inside info as my best friend was the practice nurse. The NP there wanted me off meds in a year as I've already said and I couldn't get to see a doctor no matter how I tried and so I moved to one of the better surgeries in the city and have landed with this doctor who hasn't a clue and isn't prepared to discuss anything either. I don't know if you're allowed to move again so soon. I live in Derby City in Derbyshire. She did refer me to Rheumatology but here's a 2.5 year wait. I don't know if there is anyone at Derby who specialises in PMRGCA and if so how do I find out? I'd happily pay for an initial consultation if it would get my tapering on track and take it from there. xx
Hi, I am also in Derbyshire and was diagnosed in September.Because of the long wait to see a rheumatologist, I also paid to see a consultant privately at the Nuffield. I can recommend getting an appointment with Dr Nicholas Raj who said that the initial consultation would not exceed £220. In actual fact he only charged £175 which was the best money I ever spent. I did pay for bloods too but as he is the Head of Rheumatology at Derby Royal, he did say I could have them there on nhs but I just needed to get the right diagnosis and treatment plan ASAP. He was brilliant and after just a thorough physical exam, he knew exactly what I needed and actually contradicted my GP. I did go back the following week and paid privately (because of the long wait) for MRI, ultrasound etc but again he said I could do that at the Royal.
I’m now on his recommended treatment plan via the GP but he has left me an open appointment at the Royal, should I have the need. Would highly recommend.
Wow! That sounds great. Is he a specialist in this area then Charliepeace? I just want to taper far more slowly and get back to no pain. Thanknyou fir your comments. Where about in Derby are you? Xx
I know exactly how you feel, I was diagnosed in February this year and initially the relief from pain was amazing. I could barely walk and crawled upstairs at night. I was taken down to 12.5 after about 8 weeks then to 10 after another 6 weeks I was then asked to reduce 1mg every 6 weeks. This proved impossible and I was in agony again. The doctor initially put me back to 10 because I sobbed down the phone at him but that didn't work I had to get an appointment with the rheumatologist to get back to 15 mg. Sorry I didn't mean to ramble on but I had to pester and tell how little quality of life I had. I hope you get some help soon it is an awful place to be.
My first locum GP who diagnosed aft 20yrs + of symptoms was super and advised doing what we all here knows works but lockdown came and locum went, no info as to where, NP the wanted me off pred within a year of diagnosis as it wasn’t a life threatening condition and didn’t want suing for leaving me on pred. I then changed doctors. Frying pan to fire comes to mind as this GP is following guidelines to reduce every three weeks. 😢
I'm actually amazed as after I was diagnosed and went into the NHS website, it stated quite clearly that this was a life threatening condition.We know that pred had serious side effects, but consider the alternative.
GPs need serious education.
My GP practice will happily dish me out 2boxes of paracetamol a month, but really reluctant to give me the pred.
She certainly does need serious education but with her attitude getting it to her to read is the problem. Ours don't prescribe paracetamol or ibuprofen at all so count your blessings. Neither of these have any effect on my pain so there's no point in me taking them, The NP at my old practice actually said that I have to come off the pred because if I sue them then my barrister will want to know why I was still on pred. Where he got that from I've no idea. xx
Both PMRpro and I have answered this on my Info post - But here’s a copy of my reply for ease -
Perhaps your doctors should be aware of this recommendation then -
EULAR/ACR RECOMMENDATIONS FOR PMR MANAGEMENT
Recommendation 4: The panel strongly recommends individualizing dose-tapering schedules, based on regular monitoring of patient disease activity, laboratory markers and adverse events.
The following principles of GC dose tapering are suggested:
A. Initial tapering: Taper dose to an oral dose of 10 mg/day prednisone equivalent within 4–8 weeks.
B. Relapse therapy: Increase oral prednisone to the
pre-relapse dose and decrease it gradually (with- in 4–8 weeks) to the dose at which the relapse occurred.
C. Tapering once remission is achieved (following initial and relapse therapies):
Taper daily oral prednisone by 1 mg every 4 weeks (or by 1.25 mg decrements using schedules such as 10/7.5 mg on alternate days, etc.) until discontinuation as long as remission is maintained.
In accordance with the overarching principles, the panel agreed upon a strong recommendation to
individualize dose tapering and to regularly monitor PMR patients.
Further, the panel proposed general principles for initial and post-relapse tapering of GCs (based on consensus and current clinical practice) but did not fix a schedule as in other guidelines (28–30).
The panel agreed that equivalent objectives may be achieved by alternative tapering schedules. For example, a patient with a high initial prednisone dose (eg, 25 mg/day) may have a fast initial taper followed by a more gradual decrease in the GC dose, whereas in a patient starting at a lower initial dose (eg, 12.5 mg/day), the initial dose may be kept constant for longer and then eventually reduced.
The group suggested prednisone should be tapered by 1 mg/4 weeks or similar once remission is achieved. Again, the panel emphasized the important overall principle of gradual GC reduction without the need to prescribe a fixed schedule.
The group further recognized that 1 mg prednisone tablets are not available in all countries (making a reduction of 1 mg/4 weeks unfeasible) and that other regimens such as alternate day reductions (eg, 10/7.5 mg on alternate days, etc.) are common clinical practice.
Thank you DorsetLady, I’ll print this off and post to my GP. She’ll gave time to read it before my next consultation in February. I’ve already upset her, so I can’t see things getting any worse and she has patients on a far lower dose than me she pointed out on my last phone consultation last month. All this adds to stress and not to recovery which was progressing slowly but positively with the wonderful locum GP last march
Really not sure what guidelines they are claiming for the 3 weeks. Most say 4-6 weeks on the starting dose, then monthly and ALL say the taper should be adjusted to the patient's needs and symptoms. However, that said, 2.5mg steps are not uncommon down to 10mg.
However - even with 2.5mg using one of the slowed tapers will probably help tolerate the change in dose better. Sometimes it is the change that causes problems and the DSNS slowed taper was partly devised to accommodate tapering when using enteric coated tablets which at the time only came in 5 and 2.5mg doses.
Thank you PMRpro, Both the NP from my last practise (45 yrs there) and this new GP mentioned the recommended guidelines say reduce every three weeks. I’mPresuming this is for asthma, excema, etc but I don’t know but isn’t what is recommended on specific info relating to PMR that I’ve read. I’ll send the info to her in a letter and risk the outcome as my pain levels are almost back to the beginning again. I’ve asked for 1mg so I can reduce more slowly and hopefully more effectively but she’s refused point blank.
Her one size fits all approach is not good. Thanks for replying as am feeling trapped xxx
If your pain is back to the beginning again then you have overshot the dose you are looking for. You are NEVER tapering relentlessly to zero - you are looking for the lowest effective dose, the lowest dose that gives the same result as the starting dose did. PMR is a chronic disorder, not one for which you take a dose of pred for a few weeks and then taper off. It can last up to 6 years for half of patients, longer for the rest of us:
both about the same research but with slightly different emphasis and the link to the original research is at the bottom of the article.
So she has patients on a lower dose than you - but YOU are not THEM. Does she eat the same amount as you, or her mum, or her husband? If she won't comply with your reasonable request - and don't try to hide the return of symptoms - then ask for another opinon within the practice first and then referral to a specialist.
My sentiments exactly about patients on lower doses than me. We are all at different degrees of this illness, have different reactions to meds, different pain levels and also know our own bodies as we've had them for mostly over half a century. She doesn't discuss anything, will ask a question and then cut across the answer shutting me up. I have stood my ground and said you asked a question now let me answer please and that worked once. I'm not attempting to tell her her job but want to work with her to get the best result pain, mood and movability wise we can but the work together bit isn't on the agenda. I told her I'd joined this group and had read research papers etc. but she made no comment. I'll print off the information you've sent links to and post it to her so she can read it before my next review in Feb 2021. Thanks for your support. xx
Could she not do a phone consultation with a with a rheumatologist?. The one I was referred to has taken over prescribing the pred a d has said I'll be on it for at least 2-3 years.And that seems a ridiculously long wait. There must be some way she could get you in faster.
What on earth has she referred you as? I will grant that the rheumies are in short supply and are having to catch up on 9 months of backlog plus all the new referrals too. But incorrectly managed PMR can progress to GCA - and that is a medical emergency! Do you take someone with you - come to that, do you get to see her f2f? Having someone else present often does concentrate their minds.
I’ve no idea what she’s referred me to Rheumatology as at all she just said she’d do it. I’m not allowed to take anyone else with me because of Covid.
I had a phone consultation on acceptance at the practice and then another followed by a F2F so she could examine me. She concluded after pressing my shoulders that my pain was all in the right places for PMR.
She’d refer me to Rheumatology because the wait is 2.5 yrs but at least I’ll be on the list.
If I get any head aches or pain behind my eyes then to ring the surgery or A&E.
My next phone consultation was 2.12.20 and the next is mid Feb next year.
My blood tests were ‘beautiful’ didn’t get chance to ask what a beautiful blood test looked like!!!! 🙈.
Next task to find a Rheumy knows about PMRGCA and can hopefully take over from GP or risk causing more indifference by sending print offs for her to read
When you say find a rheumy who knows about PMR/GCA - are you thinking of going privately for a first appt? We know there are still rheumies who are seeing people within days at times privately.
If so - do ask for recommendations. Private rheumies are the same ones you meet in the NHS and they also come in all varieties - the ones like Rod Hughes who are the same whether you are paying out of your pocket or not and are good and care, the ones who just do their job either way and are OK and the ones who are equally awful whoever is paying the bill!
That be what they are referring to. If I get a chance to ask a question or comment without being cut across to shut me up I'll ask and let you know. Thank you for replying. xx
I would tell her that you have been doing your research on how you can best work together to manage this complicated condition. You have obtained some information from the leading/only dedicated charity PMRGCAuk about treatment guidelines etc and would like to follow a more flexible approach, which suits your needs and is in accordance with published international rheumatology guidelines. Also get hold of Kate Gilbert's book, there's a mine of information in there for both patients and their doctors. Many of us have had similar battles and won, hopefully improving things for the next people who come along and helping to educate doctors in how to treat us, go for it, we're right behind ya!
My doctor leaves it up to me. My repeat prescription has 1mg tablets and 5mg tablets so I taper as I need without any problems. I can order every month without any problems
You lucky lady, my locum GP who diagnosed me worked the same as yours and was fantastic but then locums weren't allowed at the surgery during the first lockdown so I've lost contact with her. I wished I could find out where she has gone to. She was ace!!! I hope after sending info to my current GP then she might be more co-operative. If not I'll have to look and see if there is a more accommodating one. xxx
This is terrible, I started at 15mg, then reduced t 12.5 mg 4 weeks later, 10 mg 4 weeks after that, reducing by 1 mg each month after that - every go / rheumatologist seems to have their own favoured method. I have always been given a mixture of 5 mg and 1 mg tablets until I requested 1 mg only as I got onto the lower doses. Maybe worth discussing again with your gp - they sound very bossy - or asking to transfer to another gp if in a group practice? Have found with this condition that some gps / rheumatologists are more informed and kinder than others and it is worth standing your ground! Best wishes
I rang my GP and the hospital and sobbed down the phone to all of them. It shouldn't take that and at first I felt guilty because of Covid etc. But I was in such bad place and in agony that I was at the point I didn't think I could take it any more. I have only just joined and Dorset lady and so many on this site give brilliant advice your health is worth fighting for. Good luck and fingers crossed you get the help you need.
I cried when she said down to 12.5 the 10 on the 2nd Dec but made no difference. She told me off for going up 2.5 because I was in so much pain. I was t to alter the dose unless I consulted her first. That’s the last thing we need when in pain xxxx
Well, nearly two weeks on and I’m due to drop to 10 mgs tomorrow. The last two nights I’ve ended up finishing going up the stairs on my hands and knees as my legs were too weak to get me to the top and hurt a lot. So down to 10 is going to be a barrel of laughs over Christmas. I think someone is going to get a phone call. My practice nurse friend has sent me links which include a link to this group from the NHS site and all advice goes along with your comments. I now have my friend inside who is going to sus out a GP who knows about PMRGCA for me. GP also doesn’t think my symptoms are PMR. Apparently the inflammation markers were normal in the latest blood test I had done which my GP described the results as “beautiful”. 🙈🙈🙈🙈
Oh dear....well I think you’d better stay where you are dose-wise provide you have enough medication to get you through Xmas. An increase would obviously be preferable, but not sure that’s a certainty.
Your GP might think your bloods are “beautiful”- but really it just shows how ignorant she is about your illness...... I do sincerely hope you can get
One would HOPE the markers were "normal" when on pred - they sound like a right load of monkeys on a typewriter!!!Have you enough pred to adjust the dose? I would call 111 and see if the OOH would provide more sensible advice.
I’ve a few spares thanks to my nurse friend so I can up over Christmas but obviously GP doesn’t know so not the best situation but better for me.
I wondered about going to or ringing A and E to see if someone can help. That way it would be an official change of dosage.
She is worse than a monkey on a typewriter PMRpro. Your analogy made me chuckle.
Nurse understands completely and she’s been a good friend for years in amd out of work. Hoping she can sort out someone knowledgable but has to be careful working there. I’ve taken 15mgs the last two nights as I was in a bad way. They’ve improved things but not enough to get rid of pain.
Thank you Dorset Lady, my GP has tabs worked out literally to the day and I’m on fortnightly repeats as I hop by 2.5 for four days and got a right ticking off so now repeats say I’m not to order early and this template is clinician controlled only. My nurse friend has found me a couple of strips on the quiet so I can have some relief over Christmas while she finds out who understands the condition better. I’ve had 15mgs the last two nights which has made a big difference. Pain not gone but better.
You could try pointing out to him he is costing the NHS a fortune! Every dose on every repeat attracts a dispensing fee - and it is the same for a script for 10 tablets as it is for 100. Anybody would think he was making a nice little earner for the pharmacist!!!!
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