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Professor Bhaskar Dasgupta webinar 2020


Topic: PMR and GCA, The Road beyond Covid
The webinar outlined new ways of diagnosing, assessing and living with Polymyalgia Rheumatica and Giant Cell Arteritis: how to embrace ways of communication, remote review, self-disease assessment and self-management in a changed world.

To view the recording of the webinar press HERE


ANSWERS TO QUESTIONS NOT ANSWERED IN THE WEBINAR

Is it possible for information to be given to 111 about the symptoms of GCA?  There seems to be some rather horrifying advice given for instance when people ring in with very severe headaches.
We should definitely educate the NHS 111 helpline on GCA - it is a true medical emergency
 

What about those who don’t have raised CRP levels but have all the symptoms?
It is crucial to determine whether symptoms are directly related to Polymyalgia Rheumatica (PMR) since only such symptoms related to inflammation will respond to the use of steroids. There are other causes of pain in PMR such as osteoarthritis or pain dysregulation and in such cases, steroids are unlikely to help and may cause additional side effects.

CRP is not the only marker that determines whether PMR symptoms genuinely reflect inflammation. Constitutional symptoms such as fever, night sweats, weight loss if present suggest large vessel vasculitis (LVV) which we investigate with vascular ultrasound or PET scan.

The level of CRP also helps - for example CRP <5 is definitely normal, CRP between 5 and 10 is borderline and CRP >10 is definitely elevated.


I was diagnosed with PMR in April 2012 and was put on 30mg Prednisolone, which was quite quickly reduced to 20mg and 10mg and has fluctuated until I finally weened myself off in Sept 2019.  My last blood markers were good.  Why then do I still have muscle weakness and pain along with joint pain in the same PMR areas?
The answer here is partly given to the previous question. Muscle weakness can also be due to the use of longstanding steroids which may persist after stopping steroids. I would suggest muscle strengthening exercises and range of motion exercises for the shoulders which would help boost strength as well as give relief of pain due to osteoarthritis
 

Does the damage caused by GCA/LVV (Large Vessel Vasculitis) reverse following successful drug treatment?
Drug treatment can reverse inflammation due to GCA. However, damage caused by inflammation to the blood vessels can be difficult to reverse leaving persistent changes of the blood vessels even after optimal treatment.
 

Is damage caused by inflammation reversible?
This question has been answered by the previous question. However, it is important to highlight that damage is irreversible and it is essential to control inflammation so that we prevent damage from occurring in the first place.


You have mentioned that you do not like your patients to come off steroids completely.  I am now down to 2mg and will be finishing in August hopefully!  Should I then not stop taking them? 
Some patients with persistent inflammation require continuing low dose steroid treatment for their condition to remain in remission. However, if you are feeling well without any symptoms then it would be safe to stop steroids completely and review.  Please discuss with your doctor first.


There is controversy around routinely taking alendronic acid if you take steroids.  Can I ask what you feel about this for menopausal women?
The need for bisphosphonate (alendronic acid) with steroids is very important since high dose steroids can cause osteoporosis very quickly. That is why we always recommend alendronic acid with Giant Cell Arteritis and certainly at the start of steroid therapy with Polymyalgia Rheumatica. However long term alendronic acid can cause its own side effects by switching off bone turnover and we recommend a drug holiday after 5 to 10 years of treatment. We often stop alendronic acid below 5mg daily Prednisolone while the patient continues on calcium and vitamin D supplements.


I would love to see nutrition and dieticians involved in PMR and GCA – people feel so bad with weight increase, it is bad for their mental wellbeing.  Good diet will also support people on steroids.
I think it is important to maintain a balanced healthy diet while taking steroids. There is evidence that steroid side effects can be minimised by lifestyle. For example, the adverse effect on blood sugar and lipids can be minimised by soluble carbohydrates as well as fatty foods. While on steroid therapy all should maintain an adequate intake of calcium and vitamin D. This may be often available from normal food sources such as milk, yoghurt or cheese. Exercise and physical fitness are also of paramount importance.


What treatment options are there for the around 50% of patients who have been on  Tocilizumab (TCZ) for 1 year and after time of relapse?  They embarked on TCZ  because other options were unsatisfactory – do they have to return to those?
This is a very important question since I agree that there are patients who can relapse after stopping tocilizumab after 12 months. In individual cases we have had to re-treat particularly patients with flare of large vessel inflammation and damage. Currently NICE (National Institute for Health and Care Excellence) does not recommend funding for more than a year.  It is important to have a GCA registry where we can study our real-life NHS experience with tocilizumab and write to NICE as well as NHS England to try and relax the rules in individual cases. I agree that in many cases GCA remission after a year can be maintained with the use of alternate therapy and low dose steroids.

I was initially misdiagnosed and lost the sight in my left eye.  After 11 months on treatment – TCZ and prednisolone – when I tapered to 6mg of prednisolone I had a flare and lost some clarity of vision in my right eye.   I am so hopeful to hear you say you support a ‘lid’ of steroids, especially in the senior years.
Some patients require continuing low dose steroid treatment for their condition to remain in remission. In this situation low dose steroids may give more benefit by suppressing inflammation versus very limited side effects at a small dose. However, other causes of changes in vision such as cataract or glaucoma occur in GCA due to the effect of steroids.


I inject TCZ weekly along with prednisolone.  I have difficulty getting below 8mg of prednisolone without a flare.  Would it be so bad if I stay around 5 – 8mg per day?  I am almost 80 and feel good on this dosage.
It is difficult for me to make comments on individual cases without knowing the background case history and whether there are associated medical conditions which may be worsened by steroid use. In principle a steroid dose nearer 5 milligrams daily or lower is safer than a dose nearer 10 milligrams daily. I recommend that you discuss this with your own doctor. People can get suppression of the adrenal gland with long term steroid use that sometimes makes it difficult to drop the dose below 7.5mg daily. However, all attempts need to be made to continue steroid reduction while appreciating the benefit to quality of life it brings in individual cases.

So clear, so helpful and reassuring that all this is being taken so seriously.  What is the difference between PMR stiffness and generally arthritic symptoms?  How are they evaluated?
PMR stiffness is usually most prominent early morning, worsened with inactivity and helped by exercise. An important feature is disability with early morning activities such as difficulties with rising, dressing /undressing, walking, reaching and with hygiene. PMR stiffness tends to be more abrupt onset compared to the gradual worsening pain of osteoarthritis. However, sometimes it is difficult to differentiate between the two.

What is the recommended duration of patients on steroids before an alternative is tried?  If the newer drugs are so effective why are the alternative drugs not tried before the steroids?
This is a very important question that is the subject of our ongoing HAS-GCA study. The challenge is to stratify and identify severe and extensive GCA up front so that we can offer additional treatment early and not delay until relapses or damage occur. However alternative treatments carry their own side effects and we need to be careful. Currently there is no known treatment that can replace early steroid therapy in high doses for new GCA since it is the only treatment that can prevent sight loss.


It is great that individualised treatment is prioritised. Yet, although some research indicates that NSAID’s (Non Steroidal Antiinflamatory Drugs) can be a good alternative for PMR, why are steroids the default treatment for all PMR sufferers?
NSAIDs are not recommended in PMR or any other long-term condition primarily related to the safety issues of long-term use. This may relate to fluid retention and its consequences, damage to the gastric lining, metabolic changes and deterioration of kidney and liver function. We therefore reserve it for treating symptoms prior to the use of steroids in new suspected PMR. It is far safer to use paracetamol-based pain killers.


If there are no inflammation markers in the blood, but PMR symptoms? Should the GP be looking for some other condition?
Yes, I think I've already answered a similar previous question


The comments on alcohol, is this a general warning of not to drink too much or has it a negative impact on PMR?
How do I determine the correct dose of Prednisolone after 5 years. I’m on 13mg and still in a lot of pain in the hips and shoulders, concerned about increasing but if I do, by how much?

Alcohol is not known to have a specific impact on PMR however excessive intake definitely can cause other health issues.

I cannot comment on individual cases but long-term Prednisolone 13 milligrams daily or above can have serious side effects


I have a cataract as a result of the treatment for GCA.  Should I attend a local optician/hospital for assessment at present?
Yes


If you unfortunately contract Covid-19, should you expect to increase your steroids if you are feeling unwell with it?
Higher doses of steroids may be necessary to combat the stress imposed by serious infections such as Covid. These changes should only be made in consultation with a health professional.


Can alcohol cause inflammation of the arteries?
No


How frequently are vitamin D deficiencies in PMR patients a) before diagnosis and b) after diagnosis & during prednisolone treatment?
There is no evidence that vitamin D deficiency relates to PMR. However, vitamin D deficiency can worsen the deleterious effect of steroids and Boone and people on steroids must have adequate calcium and vitamin D supplementation.


Diagnosed with GCA/PMR 2.5 years ago.  Started on 60mg steroid, now down to 5mg.  No pain but so very stiff particularly the legs/knees.  Is this normal?
I am unable to comment on this, but leg and knee pain can relate to osteoarthritis which can be worse and as we get older


I have GCA and experience feelings of crawling under my skin, around my eyes and face.  Is this common?
No


I’m doing well on IM Depo medrone injections, but they are not often offered as an alternative to oral Prednisolone. Why is that?  Because Doctors don’t know about it?
I agree that intramuscular depomedrone injections can be very effective particularly for PMR flares. They also result in a lower cumulative steroid dose therefore may cause less long-term harm. Against this is the inconvenience of having regular monthly injections.


How can awareness be raised with medics – I was diagnosed at 50 and at least 6 different professionals in a range of settings doubted that it was GCA due to my age.
and
I would like to see more engagement with GPs.  I struggled to be taken seriously with PMR at 46.  How can this be addressed?
We need better education and training programmes for GPs and other health professionals for and GCA. I hope the charity may take an active role in this area.


What are the main differences, if any, in symptoms and recovery if you present with PMR under 50?
If there are PMR type symptoms under the age of 50 years, then this is likely due to other inflammatory rheumatological conditions rather than PMR.


If you are generally well but have been asked to come for a routing blood test, should you do so if shielding?
GPs usually need to see routine normal blood test before prescription of immunosuppressant medications.  If the medical condition is stable and the treatment is not causing side effects, it would be reasonable to temporarily relax the frequency of monitoring blood tests in the current viral pandemic.

When do we fall out of the shielding group if tapering below 20mg prednisolone?
There is no clear-cut answer for this, but I think that shielding should remain until you get to Prednisolone doses below 10 milligrams daily. Depends on other factors such as underlying medical conditions, age and other risk factors.  Please ask your doctor.

Will guidance on shielding in Scotland become more nuanced at the end of July?  Currently a blanket policy is being applied to everyone.
I do hope that shielding policy becomes more nuanced although we need to get more information on the likelihood of covered infection with patients on immunosuppressive medications.

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