Help

[GranniC1948]

I'm new here and need some information. The pain around my left shoulder and neck ,best described as being in a vice like grip, is not getting any better. I have been on Pred since September 2016. Quick decrease did not work and now on 12.5mg. Does the pain stop eventually? With the fatigue and weight gain life is quite miserable.

[DorsetLady PMRGCAuk volunteer]

Hi GranniC1948,

Quick answer - pain should reduce - but you need to be on the correct level of Pred to do that!

You don't say what dose you started on, guess around 15mg, maybe bit higher. First question did the Pred control the pain, or at least a good 70% of it. You don't always get complete freedom from pain.

Hopefully the initial dose got a good grip of the inflammation (& therefore pain and stiffness in shoulders etc). The art then is to reduce your steroids slowly until you reach a level that will keep that inflammation/pain under control. Unfortunately you went past that level by reducing too quickly. So you have to back up to the level you were previously pain-free, and start the process again.

To enable you to understand the illness a bit better see below, doctors aren't always very good at explaining, and if you don't know about it, you can't help yourself. If you know things I'm repeating then sorry, but it's something I have filed away, and send to fairly new patients. Hope it helps -

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, 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 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 and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.

In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it's usually just the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. Serious sight problems can arise if the temporal artery is affected and causes problems with 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) it does not cure the problem, but it keeps it under control.

Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer.

The initial high dose (PMR,15-20mg, GCA,40-80mg) takes control of things, 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. It's a balancing act, you 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 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. 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

Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about hour or two) 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. 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 Rheumatology 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, (Butyoudontlookill.com) it's not about PMR but 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, 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 pre PMR, so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle 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.

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.

[GranniC1948 in reply to DorsetLady]

Thanks very much. I will check out those web sites and the book. I am swimming twice a week which is lovely but tiring. You are so right about taking help, it is hard to give in. It is that thing about looking well, but feeling awful.

[Patience47 in reply to DorsetLady]

DL

My Rhuemy told me next to nothing about PMR / GCA. Your information would have helped me so much had she given it to me back in 2014.

You and so many others have been so helpful, and I thank you all.

[PMRpro Ambassador]

It is also possible that the shoulder and neck pain may not be directly due to the PMR - it could be what I call add-ons. Myofascial pain syndrome may not respond to moderate doses of pred but need more targeted treatment. Or it could be a rotator cuff problem.

Quick decreases rarely work so that wasn't surprising! However - the fatigue is part of the autoimmune disorder and that isn't affected by the pred, it just manages the inflammation and so relieves the symptoms due to that. It is your job to manage the fatigue by pacing and resting appropriately.

healthunlocked.com/pmrgcauk...

butyoudontlooksick.com/arti...

And the weight gain can be greatly helped - avoided and even lost - by cutting carbs drastically. It sounds harsh - but it does work.

[GranniC1948 in reply to PMRpro]

Thanks PMRpro, will start To watch what I'm eating as from now.

[navejasjoe]

Hi GranniC1948,

You received a very good reply from DorsetLady. My wife started on 15 mg Pred last May 24th, and she was asked to taper gradually, but probably too quickly, and all the pain and stiffness came back when she got below 10mg. But the rheumy still insisted on lowering the dosage even more simply because blood tests showed no more inflammation. She is back up to 10 now, only about 70% pain free, but she can manage and be functional there. She probably could be pain free totally at 15 again like she got at one point, but she will stay at 10 to minimize the weight gain and blood sugar misery.

Joe

[piglette in reply to navejasjoe]

Dear Joe I am sorry your wife still has pain. Whatever she does tell her not to stick it out with the pain as the inflammation will just take over if it is caused by the PMR. She could go up to say 15mg for a few days and then reduce pretty quickly if she is OK at that dose to a dose where she is more comfortable. Toughing it out is not a good idea.

[PMRpro Ambassador in reply to navejasjoe]

Just to add to piglette's comment: if the pred is not enough to clear out the new inflammation every day then, like a tap dripping into a bucket it will eventually spill over and she will have a real flare. The blood tests may be "normal" - but pred can mask that. The symptoms are always king.

Cutting carbs drastically can reduce the weight problem a lot as many will vouch for, I lost 36lbs. It helps with the blood sugar misery too.

[GranniC1948]

Hello Joe, thanks for the feedback. Sorry your wife is suffering to. This disease is hard to cope with isn't it. Sharing problems on this web site is a great way to get advice. Grannie