4th Session

[KCRoyals]

Now aged 66 and been on Pred 4 times starting each time on 15mg and tapering down to 1mg at 8 week intervals. Presently on 1mg and for a while been getting aches and pains back. Just wondered if it's possible to differentiate between normal age pains and Pred reduction. Also if I have to take it for the rest of my life are there any statistics about reduction in lifetime.

[PMRpro Ambassador]

Are you saying you haven't been on longterm pred for query PMR?

You should have been started on 15mg pred and reduced slowly to the LOWEST DOSE THAT ACHIEVES THE SAME RESULT AS THE STARTING DOSE. You don't reduce relentlessly to zero, come off pred and start again. That will never work and is exposing you to more risks than leaving you at a dose that sounds to be well below 5mg for a much longer time.

[DorsetLady PMRGCAuk volunteer]

Wow,

What a strange way to treat PMR!

You need to be on the correct level of Pred to control the inflammation (pain, fatigue etc) caused by the underlying PMR. All you've been doing is taking a high a dose at the beginning, which obviously gives you relief for so long, and then reducing it to zero over 8 weeks without controlling that inflammation correctly.

As PMRpro says, that's really a recipe for disaster.

Unfortunately nobody can say how long your PMR is going to last, maybe 2 years, maybe 4, maybe longer - but however long it is you need to be taking the correct level of Pred required to control the inflammation. If you don't take the required amount necessary, you are likely to increase your chance of other problems associated with it, or it may lead to GCA.

Think you need to read up a bit more about the treatment for PMR and discuss with your doctor.

[PMRpro Ambassador in reply to DorsetLady]

Or find a doctor who knows what they are doing - because I suspect this one doesn't...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

that's for sure!

[piglette]

KCRoyals are you saying you have reduced from 15mg to 1mg four times, each time over a period of around two months? Sounds crazy to me if I have understood you right. PMR usually takes at least two years to go into remission, not two months.

[KCRoyals in reply to piglette]

Nope, I have been put on starting 15mg 4 times in the last 5 years and told to work down. No one told me to stop at an appropriate point but am gonna talk to my GP this morning.

[piglette in reply to KCRoyals]

Ah that makes more sense!

[KCRoyals]

Thx for your excellent replies. I really do believe that my GP isn't clued up on PMR. I'll go back and put your information to her. Is a Rheumatologist the best bet?

Read that someone was sent for Physio when the condition started. Me too. The ones I had to pay told me it was going to be okay in time while pulling my joint sockets out. Not getting any relief I went to an NHS Physio who saw the problem in 10 minutes.

[PMRpro Ambassador in reply to KCRoyals]

A GP who knows what they are doing is OK and some rheumies are as bad as your GP - though they're more likely to suggest it is anything but PMR.

Get your GP to read this:

rcpe.ac.uk/sites/default/fi...

It might help!

[KCRoyals in reply to PMRpro]

Thx, I'll try take it in.

[DorsetLady PMRGCAuk volunteer in reply to KCRoyals]

Yes I was - GP diagnosed frozen shoulder!

PMR patients aren't always referred to Rheumy if the GP is capable of treating the disease, unfortunately yours doesn't sound as if she is.

Have sent extract I send to newbies, may help you to explain to GP.

It's what I've gleaned from my own and others experiences with GCA & PMR over the last 6 years. I have no medical training or expertise, except from a patients point of view.

There's a lot of information to digest, so you may need to read it through a couple of times, and take your time to read other sites etc. Too much to take in all at once.

Apologies if I'm repeating what you already know.

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/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, stiff and weakened muscles and fatigue.

In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it usually affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the 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) it does not cure the problem, but it keeps it under control. They come is 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 or high blood pressure, 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 3months, 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 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 for you. 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 (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 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, (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 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 slower lane..

I

[Zhenya in reply to DorsetLady]

Thank you Dorset Lady, that is the best description of PMR I have ever read and such sound advice for any newcomer. I have had PMR since October 2014 and have found that what works for me is reducing the pred very slowly by 0.5mg every 2 months. It is a slow process but I seem not get any flares this way and now I am down to 5mg a day. Slow but sure. Thank you for spending so much time in helping fellow PMRers. Zhenya

[DorsetLady PMRGCAuk volunteer in reply to Zhenya]

As PMRpro always says it's not slow if it's working, and avoiding flares is much better for your body and YOU. It must be very dispiriting to keep having to increase Pred.

Keep up the good work.

[KCRoyals in reply to DorsetLady]

Every forum should have a Dorset Lady.

[karools16 in reply to KCRoyals]

And a PMRpro!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

[Hidden in reply to karools16]

My thoughts exactly

[Hidden in reply to KCRoyals]

Yes

[Hidden in reply to DorsetLady]

Nice one! DL.

I think every newbie should be given this to read.

Incidentally I was diagnosed with rotator cuff injury and given physiotherapy for 5 weeks until I could not walk due to pains developing in upper legs and told to take ibuprofen. A week later I new something was not right and went to surgery as an urgent case. Saw a young locum lady who diagnosed straight away that I had PMR.

Happy days

[Rimmy]

Yes HOORAY for DorsetLady and PMRpro !!!!!!

[KCRoyals]

Been to docs today for a blood test and she says for me to up to 5mg and see what happens. She's the Practice Head and is bit more reliable in her diagnosis than the juniors I saw before . Wants to rule out any other condition before blaming PMR. She says she can understand what people are going through as her mom has PMR. The lower back pain really hit this morning and I crawled out of bed. Not been as bad as this since it started about 4/5 years ago. Normally I walk and excercise quite a lot so hope it's temporary.

ps Hooray for PMRpro too.

[KCRoyals]

Went to my GP yesterday to check on my blood tests. ESR down to 20 which I believe is borderline. Told me it's a decent result on 1mg. Her mother had PMR and after a few sessions of pred has recovered and needs no more medication. What brought this up was my inability to get out of bed without crawling due to lower back pain ( done that in the past but for other reasons and I'm afraid I don't do pain too well). Says it could be unrelated, like age pains, pulled muscle etc, so to keep on the 1mg and see how it goes until my next apptmt on 22/5. It's very difficult to differentiate between normal aches and pains and PMR related symptoms.

One thing recurs on here and that is the different ways GP's administer the doseage. I've had 3/4 methods of tapering in the 5 years I've had it. ( Didn't think a frozen shoulder would last this long ) and was until now given very little info on PMR just " take these and see what happens ".

Luckily I found this Forum and have learned so much more to which I thank you all and the RCPE link was illuminating. Wonder if they've discovered anything more since it was produced in 2012.

I'll let you know how things develop.

Thx

Tony

[PMRpro Ambassador in reply to KCRoyals]

We push going even slower - Dead Slow and Nearly Stop!

healthunlocked.com/pmrgcauk...

Only 3 people have complained they found they couldn't get on with it. One realised she was getting it the wrong way round and when she sorted that out got on really well! It s being used in a clinical study in the north of England and a few rheumies are using it or something very similar - and the feedback is good.

I get that sort of low back pain - and it is due to myofascial pain syndrome which leads to the development of trigger spots of hardened inflamed muscle fibres in pairs on either side of the spine in shoulders, about rib level and in the low back where the baby's dimples are. These can irritate nearby nerves and cause muscle spasm - ouch!

[KCRoyals]

Few more days gone on 1mg. Can feel pain in muscles and joints but within the male threshold of pain. This is my last chance to see if I can get my adrenal glands working and not be PMR bound for life. Read that people coming off Pred take an age to get rid of the aches. Been reducing 1mg every 8 weeks and haven't had a problem until now. Said earlier my ESR was down to 20 in fact it's gone up from 10. Have to admit I've been fortunate not to have any big problems over the last few years, but lack of GP knowledge didn't get them to tell me to reduce until the right point is reached until I came on here last week. So, if I have to increase again I'll find that trigger point and keep it.

[PMRpro Ambassador in reply to KCRoyals]

If you are functioning well on 1mg then your adrenal glands are quite obviously functioning!

They have to start to top-up the pred dose to the physiological level once you get to a daily pred dose of about 8mg - e.g. if you are taking 5mg pred, your adrenal glands have to produce the equivalent of about 3mg in the form of cortisol. If they don't start to do so, then you are likely to experience increasing fatigue for a start. Other symptoms of adrenal insufficiency may appear too, especially in response to stress of any sort, emotional, physical or medical in the form of trauma or infection.

The adrenal glands have nothing to do with PMR requiring pred for management. Some patients with PMR do seem to have poor adrenal function but it isn't always the case.

[KCRoyals]

Okay! I bottled it. The pain came back with a vengeance and I did as the GP suggested and started back on 5mg. Pain and aches subsided to a manageable level. Wondering how it's possible to differentiate between old age aches and pains, sprains and pulls and PMR. I have side of knee pain and lower back pain, nothing agonising but irksome.

[PMRpro Ambassador in reply to KCRoyals]

PMR goes away with pred. Old age doesn't.

[KCRoyals]

Saw my GP last week and told them I was unhappy with their diagnosis since day 1 ( frozen shoulder, back strain etc ) . They have never bothered with follow up checks I've had to do that every time. Seem to have very limited knowledge so I told them I'd like to see a Rheumatologist. Now I know some of you don't have a great deal of faith in them but at least it something they specialise in. Told to go back to 5mg from 1mg but still have aches and pains so I'm going to gradually increase by 1mg every couple of weeks till I get to see the Rheumy or I can hit on an adequate dose..

[KCRoyals]

Finally saw the Rheumy doctor who didn't sound too pleased at previous diagnosis and treatments. He says he's going to start this as a fresh case and has taken blood samples and x rayed all the painful areas. Be interesting to find out his views.