Long time

[PMR2011]

Hi all, have been a PMR sufferer for 6 years now. Seem to manage the disease on 3 to 4 mg of Pred, but can't seem to taper any more. I eat well and walk regularly. Anyone else have the disease this long have any ideas? Thanx!

[polkadotcom]

Well, I've been on steroids for 16 years and had PMR for longer than that - and I am by no means the only one here.

If you are managing well on 4mg Pred, then stay there and enjoy it. That may well be your optimal dose right now and it is such a tiny one with no side effects. If you force reductions it is no help, a flare often comes along and you have to go up even higher to contain it.

When you feel able, then we would suggest the DSNS method of tapering in small numbers.

[PMR2011 in reply to polkadotcom]

Thanks for the advice. Even tho I've been stable on 4mg I have noticed some increasing fatigue over the past 2-3 weeks. I went to PCP in Fri and my CRP was 118!. So, will see rheum on Monday. Otherwise stiffness hasn't really changed.

[PMRpro Ambassador in reply to PMR2011]

Cold? Chest infection? They can REALLY go for your CRP!

[PMRpro Ambassador]

I've had PMR for 13 years and counting. I've been on pred for nearly 8 years. I have once been down to below 5mg but was so fatigued I went back to 5mg and a few months later had a flare, back to 15mg. I'm now down to 7mg. If I get to 5mg again - I shall be totally delighted. and may well give up trying to taper any further!

In what way can't you taper any more? Does the PMR come back or is it fatigue?

[Sheribrim in reply to PMRpro]

Pmr pro :Please can you advise if you take still AA to protect stomach or do you suggest trying another med?

I know there have been reservations expressed over AA so I've stopped . I'm stuck on 7mg pred and comfortable to stay but what damage am I potentially doing by stopping AA?

[PMRpro Ambassador in reply to Sheribrim]

Alendronic acid is NOT to protect your stomach - it is to protect your BONES. I have never taken alendronic acid - my bone density has barely changed in 7 years.

As far as alendronic acid is concerned, you need a dexascan - and once you know what your bone density is, then you can discuss whether or not you need it.

[PMR2011 in reply to PMRpro]

Thanks for the reply. I guess when you get told on diagnosis it tends to last a couple years, it gets disheartening as the time stretches. I have tried very slow tapering (1mg every 2-3 months) but inevitably Morning stiffness or shoulder pain worsens. I try to live with low level symptoms to keep the Pred at minimal dose.

[nuigini in reply to PMR2011]

I share your disappointment and frustration PMR2011. I'm 3 years into PMR and have finally accepted it will be with me for a few years yet. I'm currently at 11 mg tapering to 10.5. I started at 40 mg and have had a couple of flares.

Due to my life style and sensitivity to reductions I'm reducing by .5 mg and often hold at a level for a month or more. It seems to be working although I struggle with heavy weak legs that have haunted me from the beginning and really have to pace my activities.

[PMRpro Ambassador in reply to PMR2011]

I do understand where you are coming from - and we have asked the doctors why they persist with this "2 years and you'll be off pred" nonsense. They say they don't want to upset patients any more than they are. But it is the charities who were faced with all these patients who, like you, discovered that 2 years is not so and then they believe they have done something wrong to have "failed". Plenty of doctors encourage that feeling. Cue: depression and distress.

99% of the time I don't care, in some ways it is too late to care, my 50s and early 60s have gone, the time when I looked forward to doing things while I was still fit enough and had the time. But mostly I take the pills and rejoice I can move and my brain works! Just occasionally though, I feel totally fed up.

[nuigini in reply to PMRpro]

😎I definitely share the philosophy of your last paragraph PMRpro! Except perhaps the % of time I don't care is not quite at the 99% level....yet.

[PMRpro Ambassador in reply to nuigini]

Give it another 10 years ...

[tinwoman in reply to PMRpro]

Just joined today trying to find out more about PMR mine started 2014 comforted to hear that others have similiar time frames. Doc kept going on about 1/2 years.

[PMRpro Ambassador in reply to tinwoman]

In his dreams!!!! For 75% of us at least...

[piglette in reply to tinwoman]

Hi Tinwoman, it really annoys me the way we are told that you have had PMR for two years so it has now gone away and you are made to feel guilty if you say you still have symptoms. Perhaps one day doctors will realise that what they are saying can be incorrect.

[tinwoman in reply to piglette]

Thanks for reading my post and replying - its a great support.

[PMR2011 in reply to PMRpro]

Hi PMRpro,

Right now I am feeling "kick butt" fatigue with intermittent low grade temps, dry cough, high ESR (103) and CRP (158). But no change in muscle, joints which has been well controlled on 4mg Pred. Could this be an atypical flare? Can't find any source of infection (CXR and urine normal). Neither PCP nor Rheumy think it's PMR but no one seems to be able to figure out what it is! Frustrating...

[PMRpro Ambassador in reply to PMR2011]

That doesn't sound good - sounds like another form of a/i and they may have to start from scratch. Have they considered a flare of GCA - which CAN happen without PMR symptoms?

[PMR2011 in reply to PMRpro]

Thanks for the reply. I am worried about the same thing. They seem to think because I have no head, jaw symptoms it's not that. Having had 2 temp biopsies in the past 6 years that were negative when I did have headaches I'm reluctant to have another. I am switching PCP ( been unhappy with the old and a fresh set of eyes might help). This has been going on 6 weeks and it's gotten old! Thanks again.

[PMRpro Ambassador in reply to PMR2011]

You are on low enough a dose that a PET/CT should show up something if it were. But there is severe inflammation of some sort - they can't argue with that can they!

[jenerino in reply to PMR2011]

Hello. Just to let you know that my sister had GCA and it had lodged by her heart, so the idea of it JUST being jaw and head are just not true. Fortunately it was spotted in time but it has taken a long time to get her near normal.

[PMRpro Ambassador in reply to jenerino]

In case you didn't notice, this post is 4 years old

[jenerino in reply to PMRpro]

Ha ha sorry. I didn't notice xx

[PMRpro Ambassador in reply to jenerino]

It's happened a lot today - found a load on 6 year old posts on another forum!!! Shows how long I've been around that I got notifications!

[MrsNails]

Yes, l’ve noticed a lot of Old Posts around today?

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