4 Years and still not sure if I have PMR.

Bones, joints and muscles
1

Hello, Is there anyone that could advise me please. I was diagnosed 4 years ago with PMR and GC even though I had

normal blood results. I was put high dose steroids and my pains disappeared in 3 days.

I have been on a rollercoaster ride ever since. I have had 1500mg iv. and numerous kenalog injections. I have now managed to get down to

2mg. I have now got to the stage that I cannot get up from a chair, cannot turn my head, shoulders ache and feel really down.

Every time I see a different rhuemy and apart from the one who diagnosed me they all think I have not and have never had PMR or GC (GC was diagnosed with ultrasound).

All I know is that I am in really bad pain and stiffness.

I don't know what to believe or do. Should I increase my steroids for relief or just live with this pain?

Also do you think that all the steroids I have taken has done long term damage.

Jenny

2

I think you need to find a doctor who knows something about PMR/GCA. 

If your GCA was confirmed by ultrasound - the chances are great that you had GCA with PMR as a symptoms.

I'd bet you have been given a silly reduction scheme that took no account of how you responded to the reduction. Injections are not necessary in well managed PMR/GCA. And yes - I'd also surmise you have reduced too far - and the miniscule dose you are taking is not managing the inflammation and that is why you are in pain. It is only worth it if you take enough.

The good news is that 3mg is doing nothing in the way of side effects either.

Tell us about your reduction schedule.

3

Hi Eileen. Over the past year I have reduced from 15mg down to zero several times. I reduce down 1mg a month.

It seems that when I get to 5mg I am in bad pain and stiffness. 12mg is my feel normal dose. My rheumy has also give me naproxen tablets, which do not work.

4

Naproxen doesn't work for PMR. That's all there is to say there.

You are NEVER reducing aiming for zero: you are reducing looking for the lowest dose that manages the symptoms as well as your starting dose did. As soon as those symptoms start to increase - you have gone too far and you go back to the previous dose that worked and stick there for a couple of months. Then you can try a small reduction again and see if it works.

If you are reducing at 1mg per month you can't have got from 15 to zero several times in one year - the maths doesn't work.  However, if you had stopped at 12mg and slowed the reduction down you would probably have got lower. But you are allowing flares - and every time you flare it gets harder. 

If that is what your rheumy is telling you to do - he hasn't got a clue. Where are you?

5

I am in Northampton area.

The doctors I have seen all want me off steroids really quick.

The last one told me to drop 1mg per month and to take naproxin to stop the pain.

Can I ask. If say 5mg is a comfortable dose , then I stay on that until the inflammation has gone? How long could that be?

Do you think I should start again at 10mgs. Do not have another rheumy appointment until late May. Thank you

6

Jenny, my rheumy wants me off pred asap also, due to severe osteoporosis,  and has me on a tapering  plan of 1mg per month at the moment...it was much faster at the beginning 7.5 months ago, I’ve successfully reduced from 50mg (GCA as well as PMR) but it’s been a battle. I will not reduce if I have pain or flares though, I stay on the dose a little longer. I now taper via the DSNS method over a 27 day cycle, ( there is a plan designed by the British Society of Rheumotology and British Health Professionals ) and I find this works for me. It’s still reducing 1mg per month, with leas shock to the system. There  is another plan that reduces over a longer period if you find 27 days not long enough. 

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Jenny, on saying all of that about the drs wanting me off pred asap, I wholeheartedly agree with Eileen who is our resident expert. The goal should be to find the dose that manages your symptoms, and if that means you can’t get of pred then so be it. It isn’ t a race to the bottom as Eileen so often says. Weigh up whether you want quality of life...I sure do. I’d rather an active pain free ( or relatively pain free) life on pred as low as possible than one full of chronic pain that restricts my everyday mobility on no pred. I don’t intend  to struggle any harder than I have to just to say “I’m off the pred”.i know it has long term side effects...so does immobility and chronic

 pain and depression. I know which choice I’d rather make. We are all different but weigh up the odds that suit YOU.  No ones journey is this same. 💪

8

Thank you Receregan

So are you saying find the dose that gives you mobility and relativity pain free and stay on it. How long for before I try to reduce again?

Jenny

9

Dear Jenny

Listen to Eileen. Once you are on a level you are comfortable you can try to slowly reduce. Trying to stick out the pain is a total waste of time, firstly it is not good for you and secondly you may as well not take pred if you are in pain all the time. Also as Eileen says Naproxen does not really work for PMR. If the Naproxen does work you have something else. 

10

Exactly. If you rush to the bottom then  find you can’t stand the pain, you will inevitably have to go back on  a higher dose to manage it and then start your reduction all over again, and this can take much longer. You’ve undone all the reduction work youve previously done. Find the dose that manages the symptoms to a level you can live with. Stay on that dose till your pain has reduced to a tolerable level, (mine is never longer than 6 weeks on any dosage drop, but that’s just me) then do the DSNS method of tapering. It’s less stressful on your body than dropping even 1mg for the whole  month. My DSNS  plan is over 27 days, then I stay on the reduced dose for anotner 3-4 days,and if all goes well, drop again using the same DSNS plan. If not going well, I stay on that dose till my body accepts it. I am never totally pain free, we will never be as we age anyway, but I am      

 ( currently) almost back to my pre- PMR mobility and fitness level, with the occasional day needing paracetamol/codeine to get me going again. That’s mainly for pain associated with other things though. I’ve managed to go from 50mg to 9mg over 7.5 months and reduce my Inflammation from 53 to 2 and believe me I had all the symptoms of both PMR and GCA and was SEVERELY immobile in the beginning, so I’m doing something right. Still need to build muscle and bone strength through yoga and resistance excercise but I can’t do them if I’m in extreme pain. I CAN do them if I am in mild pain.

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Hi Jenny  I HAVEN'T BEEN IN THE GAME FOR AS LONG AS YOU ONLY 4 MONTHS AND I'M ALREADY DABBLING WITH THE DOSE.   IN MY HUMBLE OPINION WHO CARES WHAT THE UNDERLYING CONDITION IS  CALLED IF THE CORTISONE WORKS AND GIVES YOU QUALITY OF LIFE IT'S WORTH TAKING..  WHAT'S THE POINT OF BEING IN COMPLETE MYSERY AND PAIN IF THERE'S A MAGIC PILL TO HELP.

EVEN IF IT DOES HAVE SIDE EFFECTS YOU CAN REDUCE IT AT YOUR OWN PACE.  BUT AS I SAY I'M NO EXPERT AND NEWLY DIAGNOSED HOPE YOU FEEL BETTER SOON JENNY

12

Lilian will be the first to say that we are all different.  Her experience is unique, as far as I can tell, from my couple of years on this forum, although there have been a few others who have managed to taper successfully off pred more quickly than the rest of us.  I suspect my experience is a bit more typical in that I was able to taper to a fairly low dose in a relatively quick time, so within a year of staring pred at 15 mg I was at 3 mg, and a year after that at 1.5.  But unfortunately I made the mistake of trying to taper too quickly to 1 mg as I half believed I was now in true remission, and that, plus perhaps some other factors like a little added stress, triggered a flare.  Eventually I had to go up to 7 mg for about a week, was able to taper back to 4 mg very quickly, but since then have had to use the dead slow method to continue further tapering.  The last few days I've finally started to feel myself again, and it looks like the taper to 3 mg will be okay, so I'm hoping very much that I'll be able to get to 2 or even back to 1.5 again by the summer.  At this particular dose I do not feel any of the side effects and yet I know PMR pain is still well controlled so am in that sweet spot we all aim for.  I guess the main thing I need to say is that although I've been on pred for 2 1/2 years for by far the majority of that time my dose has been 5 mg or less, at that level with no serious side effects, and I've not had to deal with pain issues from withdrawal.  I do think that I may be a person who metabolizes pred efficiently.  If a person only absorbs half the dose then of course they'll need more to achieve the same effects that I do with a smaller dose, but these are things we all work out for ourselves as we manage our slow taper. 🍀

13

Well I hope you don't go back to that rheumy - obviously hasn't got a clue!!!

Yes, the lowest dose that is comfortable and managing the symptoms is the one you want - but every couple of months you would then try a 1mg or 1/2mg (better) reduction again to see if that is now enough - otherwise you would never know if the PMR had gone into remission. It might be 7mg or it might be 3mg - but the slower you reduce down the more likely you are to get to a low dose. 

This is a link to our "resources" post 

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

And in it you will find links to a lot of info. The Bristol paper gives a fairly sensible reduction, from a top expert in PMR - but it doesn't matter WHICH reduction approach you use, all them say somewhere "the taper must be adjusted to the individual patient". But apparently a lot of rheumies haven't seen that bit!

The paper this article in medpagetoday reports on

No Special Risks Seen with Long-Term Steroids in Polymyalgia Rheumatica

One exception: cataracts  by Wayne Kuznar

is from Eric Matteson et all, a top PMR expert from the Mayo Clinic who has found that PMR level pred doses DO NOT cause any side effects over an above what would be found in a matched population who had NEVER been on pred. 

5mg is a low dose, it is associated with no long term problems and is less than the amount of corticosteroid your body produces every day naturally and is necessary for your body to function properly. 

It is impossible to say how long you will need it - 25% of patients with PMR are able to get off pred in a couple of years but are at a high risk of relapse later. A further half take up to 4 to 6 years. 5% of patients have PMR and need pred to manage the symptoms for the rest of their life. I have had PMR for 14 years, it has never done into remission. I know a few others in the same sort of timescale. I know a few who have been off pred on 2 to 3 years - but the vast majority of the hundreds of patients I have had contact with through the charity and forums needed pred for 4 or 5 years but then got off pred and were fine afterwards. 

Top experts say that leaving PMR to proceed without management with corticosteroids does put the patient at a greater risk of it progressing to become giant cell arteritis. If you develop GCA you will HAVE to have pred at a far higher dose than for PMR or risk going blind. 

If you continue to see rheumies who don't know how to manage PMR - is a single private consultation an option?

14

PS - forgot to say, in the replies section of the resources post you will find a slow reduction schedule which has allowed a lot of people to get to a lower dose than they have ever managed before.

15

I have to say - lilian is the first person I have come across complaining of bone pain while reducing their pred dose.

People reducing pred before the autoimmune cause of the PMR symptoms has burnt out and gone into remission will redevelop PMR pain - and it may not be the same as the PMR pain was originally. And the symptoms due to poor adrenal function can be quite unpleasant. 

16

Jenny, my exact feelings. Why be alive and incapable of even moving!!! 

17

Ptolemy, I have severe osteoporosis with a t-score of -4. I’m 62. I’ve never had a fracture, have no symptoms, and absolutely no bone pain. Apart from PMR pain and bulging disc pain that is. Although on pred, it isn’t the cause, I’ve had it undiagnosed for years. I’m small build, my mother had it, and eleventy seven years ago I was on a steroid base medication for 2 years for endometriosis. I was 26 and no one told me of the steroid side effects and no one picked up my osteoporosis till now...still with no bone pain, fracture or side effects. 

18

I think Lilian is referring to a diagnosis of osteoarthritis (OA) not osteoporosis (OP).  OA causes pain in the joints, although I'm not aware myself of pain in the long bones.  When I get pain in my shins it's because I'm cold, so maybe I have a circulatory problem rather than a bone problem, but it does feel like it's in the shinbone.  I think not caused by PMR or pred although one or the other made it worse for a while.

19

Dear Anhaga,

Ahh, I think you are probably right about the osteoarthritis, as the bone pain got worse on reduction of pred. In fact Lilian could have taken non steroidal drugs to deal with the pain while on pred. 

20

Thank you so much to you all for your advise and support.

I felt really on my own especially when the advise you get from the doctors is so little. Do they actually know what PMR is?

I have read all your comments and feel much stronger and less depressed now!

I have increased my steroids to 7mg , I will try this for 3days and if no improvement go up to my "comfort" level of 10mgs. I will follow the advise of tapering really really slowly.

Finger crossed!

Once again kind people.... Thank you x