New to group

[Georgie1958]

Hi folks, please bear with me, as I am not good with computers or technology, however I am hoping that I have managed to join your group. I was diagnosed with pmr aprox 5yrs ago, however in April this year, I was also diagnosed with gca. So I am hoping that I may find some info on both of them from all of you. Lorna

[DorsetLady PMRGCAuk volunteer]

Hi Lorna, and welcome.

Sure others will be along shortly, but I'm going to send you some blurb I send out to new patients. You probably will know a lot of the contents, but it's easier to copy and paste that rewrite it. Have a read through it, and then please come back with any specific questions.

This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it rather than the other way round.

Apologies if I'm repeating what you already know.

It's what I've gleaned from my own illness (GCA, now in remission) and others' 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.

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 etc. Too much to take in all at once.

PMR 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 illness can be controlled.

Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in 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 blood vessels are those in your main muscle groups - shoulders, hips, sometimes knees. In GCA it also affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the torso (Aorta). If only affecting your head it's sometimes referred to as Temporal Arteritis (TA). Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.

The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said 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). Unfortunately it does have some rather nasty 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 the side effects, and they can all be managed.

Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. 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: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough.

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.

The usual plan is to reduce every month 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.

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. Just ask!

Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced daily around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.

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 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 there. You have to learn to pace yourself, that means resting. 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 hopefully you can come back to it as and when you need 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.

Take care.

[SheffieldJane]

Hi Lorna and welcome. You will find this site a fount of knowledge and support. Ask your questions, someone always knows.

[PMRpro Ambassador]

Welcome! Ask your specific questions - or you might end up with 25 posts the length of DL's wonder-summary!

[Marilyn1959]

Hi Georgie1958. I joined this 'PMR' club a couple of weeks ago when my world was turned upside down and I thought my number was well and truly up!

Thanks to these guys and gals, who will respond to what may seem trivial questions to some I am getting to grips and coming to terms with what is happening to me. In addition, by following the posts, I am becoming 'educated' about this thing called PMR so that I can have ownership of my journey through from the start - always a good advantage.

Take full advantage of this brilliant resource and these wonderful people. Ask away.........