I wrote this a few months ago to try and explain GCA/PMR in layman's terms to new patients, and have sent it out many times. But it has been suggested that I make it a stand-alone post rather than as a reply to a question so it's is easier to locate. So here goes.
It's what I've gleaned from my own illness (GCA, now in remission) and other patients' experiences with GCA & PMR over the last 6 plus years. I have no medical training nor expertise - except from a patient's point of view.
I hope it will help you understand your illness a little better, and enable you to control it rather than the other way round. If I'm repeating what you already know, then I apologise, and if my explanation is not medically accurate in every detail I take responsibility, but I hope it gets the gist of the illness across.
By all means let your family, friends or work colleagues read it if you think it will help them understand your position.
There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites.
PMR and/or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illnesses can be managed.
Many of us are never sure what caused the underlying conditions of GCA and/or PMR (physical and/or mental stress are favourites though along with hereditary factors -see Are we all Vikings - healthunlocked.com/pmrgcauk... - but having them means that your immune system is not working correctly and allows certain cells associated with your blood vessels to grow out of control. That can cause inflammation within your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.
In PMR the most widely affected vessels are those in your main muscle groups - shoulders, neck, hips, sometimes knees.
In GCA it also affects the shoulders plus the larger Carotid artery that feeds your neck, head, and the torso (Aorta). If only affecting your head it's sometimes referred to as Temporal Arteritis (TA). This artery is very close to the skin, and can sometimes be seen as enlarged, plus it is where a biopsy is performed if necessary. (TAB). However, this is not the artery that can lead to blindness, that is caused by another branch of the carotid, the ophthalmic artery, which if affected can restrict blood to the optic nerve, and then partial, or total sight can be lost. If your Aorta is affected it can lead to strokes, aneurysms, coronary problems.
The only drug that controls the inflammation is Prednisolone (Corticosteroids). It does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Like most drugs it does have side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes, high blood pressure and hasten cataracts, but not everybody gets all or even the most common ones, and they can all be managed.
PMR and GCA does go into remission (except in very rare cases) but that can take a number of years, 3-4 seems to be the average, sometimes less, occasionally a lot longer. Unfortunately many doctors still insist it only last 2 years. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3 months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!
The initial high dose (PMR: 12.5-25mg, GCA: 40-80mg) which usually gives a feeling of euphoria and should relieve at least 70% of pain takes control of the built-up inflammation, however your body continues to produce proteins (cytokines) every morning, so all the time your immune system is compromised by the GCA/PMR you need to take enough Pred to ensure the inflammation doesn't build up again. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.
The usual plan is to reduce every month ( although every 2 weeks seems to be some doctors preference) but, and it's a big but, what looks achievable on paper, in real life it's very often not!
As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation, and you'll get a return of symptoms (a flare).
If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.
Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best.
See pinned post on right of page - Steroid Taper Web Application or
Recommended time to take Pred is early morning, with or after food. However as the cytokines that trigger the inflammation are produced daily around 4am; some people find that by taking the plain uncoated tablets around 2am or coated ones the evening before it is fully in their system by that time and it's ready to fight the inflammation.
When you collect your first prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or doctors surgery may have leaflet. You should also continue to carry card for a year after stopping steroids.
Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side. There are also local support groups listed.
There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.
Look up 'Spoons Theory' on web, (butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.
You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease. You have to learn to pace yourself, that means resting. Most people find that fatigue is the hardest thing to cope with.
Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, Yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscles recover, and that now takes longer.
Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.
As I said at the beginning a lot of information to take in, but if I condense it too much I can't give all the information I want to.
Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.