FAQs

PMR or GCA are not inherited conditions. But they are commoner in people of Northern European origin suggesting that genetics probably plays a part. But, just because you may have it, does not mean that your siblings or your children are likely to get it.

1. The steroids may have masked the natural pains and stiffness that everyone experiences in getting older. So when the mask comes off, the experience of several months to years may hit you in one go. This usually gets better as the body adjusts to not having the same amount of steroid.
2. Synthetic corticosteroid therapy (prednisolone) above 15 mg for 15 days suppresses the natural production of cortisol by the adrenal glands. The longer that you may have been on steroids, the less likely it is for your adrenal gland to recover. If that is the reason for your problems, your doctor can check your cortisol levels at 9am (when your levels should be at their highest), and if they are low, that would need specialist input from either your rheumatologist or an endocrinologist (a doctor with specialist interest in hormones)
3. Rarely, it is the third cause where your disease is refractory and just needs a constant low supply of steroids to keep it in a box. On HealthUnlocked, our online forum, you will find lots of discussion on tapering steroids.

The short answer is ‘yes’. But it really depends on the kind of work you have been doing and, to some extent, on the support you can get from your employer. You may need to make some adjustments to your working pattern, for instance going part-time for a while. On our helpline and forum, we encourage PMR and GCA patients to talk things over with occupational health or their union, if they are able to, in the first instance.  In the early days of getting used to having PMR or GCA, it can be tempting to act as if nothing has happened and you are not ill.  This is not a good idea. You may need to go on sick leave for a while to give your body time and rest to start itself on the road to recovery.

You are not alone.  This is a very common problem. Steroids are a necessary evil, and it is important to make friends with something that is preventing you from experiencing the worst aspects of PMR and GCA. But there are some simple things that you can do to minimize the side effects –

1. Take them after breakfast. If your body was making steroid naturally, you would have a peak in the morning. Since you are taking your steroids as tablets, it is best to mimic the natural rhythm and take them between 8am and 10am.
2. Agree on a taper with your rheumatologist. Ideally, you should have a taper which is tailored to you, especially for GCA.
3. Be very careful what you eat. Steroids give you the ‘munchies’ and it is easy to reach out for cakes and biscuits. That weight is not going to come off easily. It may be an idea to stock up on healthy snacks. Carrots and low fat humous can be your friends.
4. Exercise regularly. Steroids can reduce your muscle mass. So you need to engage in some resistance exercise to ensure that your muscles remain engaged.
5. Ensure that you attend surgery for regular checks for diabetes. Unfortunately, steroids can unmask diabetes and you want to find out about that as soon as possible. Your doctor can invite you to be having regular sugar and blood pressure checks. If your rheumatologist has a specialist nurse attached to the unit, this would be an ideal to discuss with them.

Taking paracetamol for a few days, if you can tolerate it, is preferable to putting your steroid dose back up again. Paracetamol is complementary to prednisolone and will not interfere with its action. NSAIDs such as ibuprofen should not be taken when you are on steroids for GCA or PMR. But do discuss pain relief with your doctor. Don’t be a martyr to pain.

Many people with polymyalgia rheumatica say that, in the early days, they are experiencing so much discomfort that any pressure or manipulation would be quite unpleasant for them. So, for example, people who have enjoyed massage in the past may find it uncomfortable.  But a physiotherapist should be able to give advice on stretching and strengthening exercises that will improve mobility and keep you in good shape as you move towards recovery. After long-term steroid treatment there can be some damage to ligaments and tendons (e.g. ‘rotator cuff syndrome’), and if you are unlucky enough to have this, you may find that advice from a physiotherapist can be helpful.

Most people with PMR need about 1 year and those with GCA need 2 years. However, approximately 25% of people with PMR are likely to have a more complicated form of the illness which will take longer to get over; sometimes many, many years. Some people will experience relapses which will result in needing a higher dosage of prednisolone. It is of great importance that every relapse of disease necessitating a rise in prednisolone is formally diagnosed with assessment from a rheumatologist.

Also, the steroid tapering plan will need to change. After all, if you do the same thing again, you are likely to have the same result. Unfortunately, some people will have refractory disease as well. This means that the symptoms will come back when you are off treatment and they will require much longer term or even life-long prednisolone. The good news is, though, that most people will make a full recovery. 

Truth be told, no one really knows. The answer is probably more complicated that we could explain simply. But in general, polymyalgia rheumatica and giant cell arteritis are inflammatory diseases, and steroids are extremely potent anti-inflammatory agents. Nobody has ever done a study on giving steroids to some patients and placebo to others to demonstrate what the effect of steroids is. This would not be ethical. But, we know from several experiences, that a delay in starting steroids can cause a huge amount of debility in patients with PMR and blindness or stroke in patients with GCA.

It’s a rather sad fact of medical life that in 70 years of treatment for polymyalgia rheumatica, options have moved on hardly at all.  Prednisolone remains the standard treatment, although its adverse side-effects are well-documented, and feared by many patients. However, prednisolone is very effective in the majority of cases, and it is very cheap.  For these reasons, there has been very little incentive for pharmaceutical companies to look for alternatives.

Everyone is different and it may be that a starting dose of 15mg for polymyalgia rheumatica and 40mg for giant cell arteritis (60mg in the case of ischaemic, or eye symptoms), is not perfect, but it is the dose specialists have generally agreed as being the lowest possible dose to get the symptoms under control. However, very large and very small patients may find that they need a bit more or a bit less.  As you start to reduce your steroids after a few weeks of treatment, you may find that your symptoms return to some extent when you drop your dose. This does not necessarily mean that you have dropped the dose too far. Give it a few days. You need to pay close attention to how your body feels and reacts, to discuss this with your doctor. There is evidence that people who reduce too rapidly, without giving their bodies time to adjust, may experience ‘flares’.  Our experience listening to hundreds of people’s experience over the years has been that, once you get to about 10mg, tapering should be very gentle indeed, no more than 1 – 2 mg at a time. It is the cumulative dose over time that needs to be kept to a minimum, and this is why repeated going up and down again should be avoided unless a relapse has been formally diagnosed.

Yes, is the short answer. However, that specialist could be anyone who has a vast experience of treating patients with PMR successfully. Usually this is a rheumatologist, but your GP or a geriatrician, neurologist, ophthalmologist may all be experts in this.

PMR is a condition where your shoulders become achy and there is not one single test that can prove the diagnosis. On the flip side, there are many conditions that can cause that manifestation – rheumatoid arthritis, cancer, giant cell arteritis, myositis, rotator cuff tendinopathy can all cause similar looking symptoms. Therefore, it is vital to do tests prior to starting steroids. Steroids will make the symptoms of all of these conditions better whilst making diagnosis more difficult (because the symptoms have been masked by the steroids). You may find it much more difficult to come off the steroids without the underlying condition being recognised and treated appropriately.

GCA is an emergency and should be treated immediately with steroids. However, even in this emergency it is of extreme importance to get blood tests prior to starting steroids. In an ideal world, you would be seen on the same day by the expert and all the tests would be done prior to starting treatment.