Hi all, I finally had my first rheumatologist appointment on Wednesday after five weeks of waiting. I had a scan of my armpits and temporal arteries, she said there is no sign of GCA , but after five weeks on 40mg pred I don't suppose there would be. She also said she wasn't convinced i even have polymyalgia because at 53 I'm a bit too young, I told her i had spoken to a lot of people on here of similar age that have it but she still isn't convinced, she got me doing all sorts of pushing and pulling with my arms and legs, I apparently have weak thighs, she did blood tests to check other issues that may have caused the muscle pain i was experiencing before the pred. I still think it is polymyalgia but at least I can now start reducing my dose. She has told me to drop by 5mg every three days until I get to 10mg then to reduce by 1mg every month until in off them, it will still take about 10 months to get off them but at least the side effects should lessen on the lower dose, I now have oral thrush to add to my long list. She said she will send me a follow up appointment for six months time unless anything shows up in the blood tests, six months seems quite a long time but I will just have to see the gp if I have any problems.
Rheumy appointment: Hi all, I finally had my first... - PMRGCAuk
Rheumy appointment
Why on earth can't they keep up with current thinking? OVER-50!!! And that doesn't mean it doesn't happen younger - it is just more common in over 50s.
In fact - I have heard comments that NICE say over-40, If anyone has a link for that could they post it please as I can't access NICE edicts from here.
PS - what hospital?
Nuffield hospital Oxford
I've heard such various reports of there - and some weren't comforting for place that has a name.
Hi poppylop. I too go to the Nuffield (since 2015). Am due there next month. I eventually found out that there is a rheumatology advice line for use in between appts. If you want to chat about your experience there then private message me. The rheumatology advice line is 01865 737656 (obviously only fir patients under their care) I haven't used it for years but assume it’s still in operation. Sorry about your stress. All the best cc
This is all I could find on NICE - but it still states unusual in under 50s - will have another look -
cks.nice.org.uk/polymyalgia...
I've not been able to find anything - and I can't remember who mentioned it now.
Twas me. I will find the download 40 onwards....
cks.nice.org.uk/polymyalgia...
Can you copy and paste the statement - NICE is xenophobic ...
Polymyalgia rheumatica
Last revised in January 2019Next planned review by December 2023
Scenario: Management of polymyalgia rheumatica
From age 40 years onwards.
How should I manage a person with polymyalgia rheumatica?
For people in whom a working diagnosis of polymyalgia rheumatica (PMR) has been made:
Reduce the dose of prednisolone slowly when symptoms are fully controlled.
A suggested schedule for reducing prednisolone is provided below, but smaller dose reductions and longer durations at each dose may be needed to avoid relapses in some people. Typically, treatment is required for between 1–2 years.
For people who are well controlled on 15 mg daily, a suggested schedule is to:
Continue prednisolone 15 mg each day until symptoms are fully controlled (usually 3 weeks), then
Reduce the dose to 12.5 mg each day for 3 weeks, then
Reduce the dose to 10 mg each day for 4–6 weeks, then
Reduce the dose by 1 mg every 4–8 weeks until treatment is stopped.
For information on prescribing prednisolone, including contraindications, adverse effects, and drug interactions, see the CKS topic on Corticosteroids - oral.
Ensure the person is provided with a blue steroid card, and discuss potential adverse effects of corticosteroids. In particular, advise them:
Not to stop taking prednisolone abruptly and to seek medical advice if they are experiencing problems taking it.
To avoid close contact with people who have chickenpox, shingles, or measles if they do not have immunity to chickenpox or measles and to seek medical advice if they are exposed.
Provide written information on PMR and regional patient support groups.
Polymyalgia Rheumatica and Giant Cell Arteritis (PMRGCA) UK (pmrgcauk.com) provide information packs, a helpline, newsletters, support groups, and a web forum for people with PMR and GCA.
Versus Arthritis (versusarthritis.org), formed in 2018 following a merger of Arthritis Care and Arthritis Research UK, have information booklets on Polymyalgia rheumatica and Giant cell arteritis.
Arrange routine reviews one week after any change in dose and at least every 3 months in the first year following diagnosis.
Advise the person to arrange a review at other times:
Urgently, if they develop symptoms of GCA.
Routinely, if they develop symptoms of relapsing PMR, including proximal pain, fatigue, and morning stiffness.
Refer for specialist management if:
It is not possible to reduce corticosteroids at reasonable intervals without causing relapse.
Corticosteroids are required for more than 2 years.
The person is experiencing (or is at high risk of) adverse effects from corticosteroids.
Assess and manage osteoporotic fracture risk. For more information see the CKS topic on Osteoporosis - prevention of fragility fractures.
Basis for recommendation
These recommendations are based on the British Society for Rheumatology (BSR) and British Health Professionals in Rheumatology (BHPR) guidelines for the management of polymyalgia rheumatica (PMR) [Dasgupta et al, 2009] and are supported by the 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism (EULAR)/American College of Rheumatology (ACR) collaborative initiative [Dejaco, 2015] and expert opinion in review articles on PMR [Ameer, 2014; González-Gay, 2017; Matteson, 2017; BMJ Best Practice, 2018].
Prednisolone dose reduction
The dose of prednisolone should be reduced slowly because:
Rapid withdrawal of long-term (more than 3 weeks) treatment with an oral corticosteroid may cause acute adrenal insufficiency (which can be fatal) [BNF 76, 2018].
Relapses are more likely to occur if corticosteroids are reduced or withdrawn too quickly [González-Gay, 2017; BMJ Best Practice, 2018].
Rapid tapering of corticosteroids has been associated with longer duration of therapy [Dasgupta et al, 2009].
The suggested tapering schedule is based on the BSR/BHPR guideline. The guideline working group found evidence for a steroid regimen to be lacking and therefore based their suggested dosage regimen on a consensus decision. This guideline discussed the need for flexibility when tailoring treatment for an individual and acknowledges that, in practice, regimens may vary from the one suggested [Dasgupta et al, 2009].
The EULAR/ACR guideline recommends using the minimum effective corticosteroid dose within a range of 12.5 mg–25 mg prednisone equivalent daily as the initial treatment of PMR. A higher initial prednisone dose within this range may be considered in people with a high risk of relapse and low risk of adverse events, whereas in people with relevant comorbidities (such as diabetes, osteoporosis, and glaucoma) and other risk factors for steroid-related adverse effects, a lower dose may be preferred. Daily doses of 7.5 mg or less or more than 30 mg are not recommended. The following principles of corticosteroid dose tapering are suggested in the guideline [Dejaco, 2015]:
Initial tapering — dose should be tapered to an oral dose of 10 mg a day prednisone equivalent within 4–8 weeks.
Tapering once remission is achieved (following initial and relapse therapies) — daily oral prednisone should be tapered by 1 mg every 4 weeks (or by 1.25 mg decrements using schedules, such as 10 mg/7.5 mg alternate days) until discontinuation given that remission is maintained.
The schedules suggested by previous expert reviewers of this CKS topic varied considerably, and locally recommended schedules may differ.
Some experts recommend the use of intramuscular methylprednisolone in milder cases of PMR [Dasgupta et al, 2009; Dejaco, 2015]. However, intramuscular methylprednisolone is not routinely used in primary care.
Information and advice
CKS has extrapolated the advice on prednisolone treatment from information in the BSR/BHPR guideline [Dasgupta et al, 2009].
Prolonged courses of corticosteroids increase susceptibility to infections and severity of infections.
According to the British National Formulary (BNF) [BNF 76, 2018]:
People receiving oral or parenteral corticosteroids for purposes other than replacement should be regarded as being at risk of severe chickenpox unless they have had chickenpox. Passive immunization with varicella–zoster immunoglobulin is needed for exposed non–immune people receiving systemic corticosteroids or for those who have used them within the previous 3 months.
Confirmed chickenpox warrants specialist care and urgent treatment.
People taking corticosteroids should be advised to take particular care to avoid exposure to measles and to seek immediate medical advice if exposure occurs. Prophylaxis with intramuscular normal immunoglobulin may be needed.
According to the Public Health England (PHE) guideline Varicella: the green book, chapter 34, immunosuppression should be considered in people receiving 40 mg prednisolone for more than a week (more than the dose recommended in this topic), but there may occasionally be people on lower doses of corticosteroids who may be immunosuppressed and at increased risk from infections [PHE, 2015].
judgement is pragmatic. CKS considers that routine monitoring of these parameters is unlikely to alter management of PMR, but these tests may help to inform the management of comorbid conditions.
Although a reduction in erythrocyte sedimentation rate (ESR) in response to prednisolone is useful in making a working diagnosis of PMR, an isolated raised ESR or C-reactive protein (CRP) once a diagnosis of PMR has been made is not a definite indicator of relapse (which is defined as recurrence of symptoms). CKS has therefore not recommended the routine monitoring of inflammatory markers.
Expert opinion in review articles is that:
When corticosteroids are tapered, disease flares may occur frequently (an average of 1–2 episodes per person-year) and are often manifested as new-onset or recurrent PMR [Weyand, 2014].
Signs and symptoms of giant cell arteritis (GCA) should be monitored because GCA may manifest itself when the corticosteroids are tapered [BMJ Best Practice, 2018]...........
© NICE 2019. All rights reserved. Subject to Notice of rights.
The i.m. Treatment is mentioned.
Personally, I wouldn’t be 100% reassured, from what I have read and learned from the clued up people here who keep abreast of the latest research and send useful links.
I also think the rapid reduction from 40 will cause unnecessary suffering. I would want slower and maybe 2.5 mg drops. Then at most 1 mg drops after 10 mgs.
I would also remain on high alert for GCA symptoms, neck and head pain, any eye symptoms, jaw and or tongue pain upon chewing, any fever. Then I would go to A&E as an emergency.
The age thing is just wrong, should be 50+ and we have younger people on here.
You say yourself that the Pred will have reduced the diagnostic possibilities.
I would be keen to have another opinion. My Rheumie manipulated my limbs and observed my walking etc. I thought I did well, at no point was I told that my diagnosis was wrong. More symptomatic phases emerged as I tried to taper from 7 mgs.
Let us know how you get on. She is clearly not treating for PMR yet it is not discounted, so be aware of typical PMR symptoms emerging.
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