I am going to the Dr tomorrow with my Mum who has had this condition for over 2 years now. Her Doctor is trying to take her off her steroids, but too fast, and her body doesn't seem to be able to tolerate 1mg per month reduction. She's in a lot of pain. I'm going to ask for her to be referred to a Rheumatologist. Anything else I should be asking him? Should she have a Temporal Artery biopsy or is this not necessary?
Any advice would be VERY gratefully received! Thanks...........
Hi I take it your mum has PMR. There should be no need for a biopsy unless she is complaining of head pain, jaw pain when eating or vision problems, that trigger suspicion of GCA. Is this GP expecting your mum to taper when she still has muscle pains? The aim of the taper is not to get to zero, but to reduce to the lowest dose at which symptoms are controlled. It sounds as though your mum needs to increase her dose. PMRPRO or Celtic will probably pop on and explain some of the slower tapers which others find useful. I had a Rheumy slow mine down to 1/3mg per month, but there are many others. GPs are often reluctant to send "typical" patients to Rheumys unless they are struggling to reduce and they think DMARDs may be useful with tapering, or they feel there may be some other reason for the symptoms. These meds can only be prescribed by a specialist. There is uncertainty in how useful they are, some swear by them, others find they do nothing but give more side effects from more drugs. Good luck tomorrow.
Torallen, has your Mum been diagnosed with PMR or GCA? In the case of the latter, then it is generally recommended that patients are referred to a rheumatologist. However, if your Mum has been on steroids for as long as two years, then a temporal artery biopsy would be a waste of time as the large cells indicative of GCA will have resolved due to the long term steroid treatment. Where GCA is suspected, the biopsy needs to be carried out within a couple of weeks of commencing steroids; even then, any large cells can escape the small portion of artery removed for biopsy so is not a foolproof test.
If you can let us know what symptoms your Mum is experiencing, her steroid starting dose and present dose, we will try and help further.
Hi. Yes she has been diagnosed with GCA (it took a while!). She was on 12mg for quite a while as she was quite unwell for a while. She has been on 5mg more recently which seemed to suit her but the GP suggested coming down 1mg per month. I think she made it to 3mg and felt horrendous and was in a lot of pain in her shoulders and neck. She also finds it very painful eating (very sensitive/painful teeth). I hope this makes it a bit clearer. She is currently on 5mg again.
As Celtic says - if it was GCA I do hope it was more than 12mg - 40mg is the usual starting dose for GCA without visual symptoms. With visual symptoms you need even more.
This link
rcpe.ac.uk/sites/default/fi...
is a paper by members of the Bristol rheumatology group which is aimed at GPs to help them diagnose and treat PMR and GCA more confidently and using a scheme that results in fewer flares due to reducing the pred dose too fast or too far, which is the primary cause of flares. It spreads the reduction over a period of 2 years - but as the dose goes down you go by the symptoms. If the symptoms return, then you have identified the endpoint: the lowest dose that manages the symptoms. Only about a quarter of patients get off pred in 2 years, half take up to 5 or 6 years, the rest take much longer. I've had PMR for 10 years, 5 without pred, and now am on 4mg and well.
How old is your mother? I assume at least my age, probably older. If she is fine at 5mg then her GP can leave her there for a while.It is a low dose, not particularly risky. Every so often she should try a SLOW reduction, 1/2mg at most, and if one 1/2mg is OK after a month or two, try another. But nothing faster - no reduction should be more than 10% of the current dose or it should be spread over several weeks.
This link
healthunlocked.com/pmrgcauk...
takes you to the slow reduction I developed. I never got below 9mg until I used this approach, now I am at 4mg. My rheumatology-trained GP is perfectly happy with that. All the reasoning is there.
Your GP can manage this if s/he is sensible and sympathetic. There is nothing wrong with being at 5mg after 2 years or so - I know a lot of people who'd think they were in heaven at 5mg! The first link I gave you is aimed at GPs but they need also to accept that the final stages of reduction are tricky and after 2 years it isn't the end of the world if the patient is still on 5mg. There is no point in being on too low a dose - in that case you might as well tell the patient to stop pred altogether and just suffer.
The second to last link in the article you will find here:
pmrandgca.org.uk/research-a...
is an excellent review by one of the top PMR research groups in the UK (Mackie and Mallen) and I think it is something you should also ask your GP to read and consider - possibly even more than the first link. These two expert articles should enable your GP to approach your mother's care far better. A reduction scheme very similar to my slow reduction is already being used successfully by a specialist in the north of England, mine is under study by another group.
As the diagnosis was GCA, I do hope her starting dose was much higher than 12mg. My starting dose was 40mg and some patients are started on 60mg or even higher.
Certainly coming down 1mg a month from the 5mg dose and below is far too fast for most of us at this stage. The lower we get on the steroids, the higher the percentage drop, and our bodies can resent even the smallest reduction in dose. Many of us have stumbled when trying to reduce below 5mg and have only found success when tapering in just half mg decrements over a longer period. I had a major flare around this dose necessitating a return to 10mg. Once back at 5mg, I started cutting the 1mg pills in half and just reducing by half a mg on one day of the week followed by two days the following week, etc. There are other very similar routines.
Your Mum should definitely be referred to a rheumatologist. Meanwhile, she should return to just above whichever was the previous dose at which she felt comfortable. For instance, if she felt her best at 5mgs, then perhaps an increase to just above that point will give her some relief in just a few days, say 7.5mg. Also if she is someone who had raised blood test markers of inflammation at diagnosis, these should be repeated before any reduction and used as a guide, along with her symptoms.
Hi Torallen, I have just seen the Professor who wrote the guidelines for GPs and Rheumys to follow. He told me when his patients are into single figures he advises a reduction of 1mg over 3 months. So he suggests for example:
month 1 = 8/8/7
month 2 = 8/7/8/7
month 3 = 8/7/7
month 4 = 7/7/7/7.
the reason for this is to trick the body so that it doesn't notice the reduction, and also to gentle nudge the adrenals back into action.
Good luck today
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