Do you need a Rheumy?

[LozzaSandstrom]

Hello all, I was diagnosed in March with PMR after quite a few years of a myriad of aches and pains (some arthritis in hips, back and feet) when it got a lot worse and I couldn't lift my arms up and had pain, seemingly everywhere.

I was started on 15mg and am currently between 7.5 and 10 alternate days with a review at the end of the month. Not pain free for sure and still very fatigued if I do anything extra - a weekend away last weekend trading at a festival was a completely different experience to last year and before with lots of naps and very little setting up as I couldn't do it - although heat was a. major factor.

My lovely doctor who is patient and goes with me on how much I feel I need, says that there's no reason to refer to a rheumatologist now as its been diagnosed. I am near Norwich where I am told a certain Rheumy called Max is based and - really and truly - do I need to get them involved too when it seems like its going ok for me? Its not great - its definitely not as good as before but I am so much better than I was 4 months ago, and as this condition will eventually leave me - is anything to be gained from seeing someone else?

Thanks in advance - just away that the NHS is full to bursting and I am coping ok - with a reduced lifestyle which is what seems to be the case.

[jinasc]

Normally PMR is dealt with at the GP level. GCA at Consultant level.

A referral to an Rheumy is when the PMR turns problematic.

When you took the 15mg did 70% of the aches and pains go away? If not you have been reduced to quickly and not got on top of the inflammation and how long were you on 15mg?

Being diagnosed in March, started on 15mg now down to 7.5mg - too fast a reduction. Normally the reduction is no more than 10% at a time, until you reach 10mgs and then we suggest you use one of the tapering plans. DSNS has been subjected to a small research project.

If you need more information about PMR to talk to your GP take the time to

read the FAQ's (found in the pinned posts top right hand side) . PMR, tapering etc - knowledge is power.

Come back and ask any questions you have. you want to.

[LozzaSandstrom in reply to jinasc]

Hi there - yes actually they all went away I am pretty sure I keep pushing this too much but I hate being on the steroids and just keep trying to keep to the bare minimum - shouldn't I know! I am back on 10 I think for the rest of the month and then try 9 - I just keep thinking I can beat this which is stupid really - it will go when it goes ....

[jinasc in reply to LozzaSandstrom]

If you keep on yo-yoing your pred you end up taking much more than slow but sure.

PMR is a long haul.

[LozzaSandstrom in reply to jinasc]

Good advice thanks

[Seacat30]

My GP referred me straight to Rheumatology but that might have been her trying to shift me off her overloaded surgery. I see far more of them than I do her.

[LozzaSandstrom in reply to Seacat30]

Really? Thats interesting - I just have phone appointments but this lady doctor has known me for years and knows something of my life so to be honest if she is happy to take the time I think I am very lucky really, its a great surgery - and as I say it seems to be going ok - ish!

[MrsNails]

From FAQ’s

Referrals to a Rheumatologist…..

healthunlocked.com/pmrgcauk.....

[LozzaSandstrom in reply to MrsNails]

Thanks very much for that

[MrsNails in reply to LozzaSandstrom]

I think it explains it very well.

[123-go in reply to MrsNails]

Thank you, Mrs Nails. Very interesting!

[PMRpro Ambassador]

If you have a good GP that you get on with and listens - good. But if anything goes pear-shaped or you lose that lovely GP - is she young and married? - bear in mind that the one good PMR doctor in my practice was next to impossible to see as she was part-time and kept having babies which meant that about half the time she wasn't there at all and the rest was a very popular young woman so you waited a long time to get an appointment. What we are saying is that Max is superb when it comes to PMR and does research ...

[LozzaSandstrom in reply to PMRpro]

Ha yes I know what you mean! No she is my age - so really she will be retiring soon she is only part time now so yes I have to make the most of her while I can - thanks!

[piglette]

Around 75% of people with PMR never see a rheumy. It is only if something out of the ordinary happens or your GP knows nothing about PMR is when you need a rheumy. I had one right at the beginning as I went privately as my GP kept saying I had a virus and I could hardly move in the end.

[Koalajane]

I would think going between 10 and 7.5 on alternate days is not good for you. I would try one of the tapers mentioned when from 10mg you drop by 10%

[DorsetLady PMRGCAuk volunteer]

“am currently between 7.5 and 10 alternate days with a review at the end of the month”

I know lots of doctors follow that approach, but like Koalajane says I don’t think it does you any favours. It might not sound much but it’s a 25% difference in meds from one day to the next. ..and that’s not something PMR likes.

Guidelines say below 10mg reduce by 1mg every 4-8 weeks depending on patients wishes and disease activity.

The system you are following is also mentioned, but from what I’ve read on here over the last 10 years I know which is more successful at getting you lower-and that’s what you want.

No point in trying to take too big a step down, if all it does is make you flare and consequently have to up your dose again

As has been proved many a time you will actually get off the Pred quicker and have an easier time if you reduce slowly.

[LozzaSandstrom in reply to DorsetLady]

Yes you are right - they had no 1mg tablets so I couldn't go to 9mg - I might just keep on 10 until the next meds review and get lots of 1mgs and go down that way - thanks for your advice as always

[PMRpro Ambassador in reply to LozzaSandstrom]

Are they plain pred? If so it is possible to cut into quarters - doesn't have to be accurate, as long as it is less than what you are taking. That makes the drop more like 1mg.

[LozzaSandstrom in reply to PMRpro]

Right some are yes - do I need a pill cutter?

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

Can use knife, but cutter safer had this one for ages -still good -only a couple of ££

Cutter

[PMRpro Ambassador in reply to LozzaSandstrom]

Makes it simpler when you find one that works for you - OH and I had one each, same design. Mine is great for me - couldn't use his for toffee!!!!

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

As PMRpro says plain white tablets can be cut - if you only manage a halve it’s better than 2.5mg

[LozzaSandstrom in reply to DorsetLady]

Yes you are absolutely right I have gone back up to 10 - I am wasting time here yo-yoing

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

Good move!

[RoRee]

I too live in Norwich. I’m 74 years old and have PMR . I started on 20 mg pred 18 months ago . I got down to 5 mg but had a relapse and went back up to 15 mg . I’m now down to 10’mg . I’ve never seen a doctor and was diagnosed over the phone . I’ve never seen a rumatologist and have only had one blood test . Also I’ve only just been sent a steroid card that I must carry with me . Feeling neglected is an understatement. I shall try and wean off as and well I feel I’m less pain . I hope you feel better soon .

[Crochetgardener in reply to RoRee]

Hello RoRee, I live in Aylsham , like you I was diagnosed over the phone in Sep.21 following a blood tests and my descriptions. Started on 30mg of prednisolone and told to taper it down . How ? Have never seen a doctor face to face . Was told to have a blood test when I got to 5mg which unfortunately showed low cortisol so now am actually going to see an endocrinologist at the N and N in August. Still get pain in my hips and back, but would love to get off these wretched steroids.

[PMRpro Ambassador in reply to Crochetgardener]

You will find lots of info about tapering in our FAQs,

OF COURSE your cortisol is low if you are still on 5mg of pred - seeing an endocrinologist won't achieve a lot!

[Crochetgardener in reply to PMRpro]

So why on earth am I going ?This is so confusing, my surgery told me the hospital would now be taking over the management of my case

[PMRpro Ambassador in reply to Crochetgardener]

Who knows - all set up by someone who doesn't actually understand adrenal function when on pred? Wonder what they said in the referral - Longtimer's rheumy can't get the N&N endocrinology department to see her.

[Crochetgardener in reply to PMRpro]

I was told my cortisol level was 28 dies that mean anything to you please

[PMRpro Ambassador in reply to Crochetgardener]

That is a very low level - under 100 is indicative of adrenal insufficiency - but the pred you are taking is suppressing the amount of cortisol the adrenals produce. I liken it to having central heating (your adrenal production of cortisol) and a wood-burner stove (the pred) in the room with the thermostat. As long as the room is warm the central heating boiler does nothing for the heating - only when the wood-burner gets low and not producing as much heat so the room cools down.

Only once you get down to about 3mg daily pred does the adrenal production really get going to top up the level to what the body needs and that can take time, it isn't a sudden flick of a switch, more like a dimmer switch on a light. The only thing that encourages the return is a low dose of pred and waiting out the fatigue that tends to happen. It can take months. If the PMR is burned out and in remission you wouldn't need the pred and an endocrinologist could help a bit by switching you to hydrocortisone which can be dosed differently, 2 or 3 times a day to mimic natural production and more likely to leave a very low dose of steroid in the body at midnight which is the trigger to the body to make cortisol for the early morning. However, HC is much weaker as an antiinflammatory and often doesn't manage the PMR if it is still there. This level IS difficult as you have two things to balance - you can't reduce the pred unless the PMR is gone but you need to reduce the pred to wake the adrenal function up. If like Dad2Cue you can get tocilizumab to manage the PMR you can get off the pred. But that isn't going to happen in the UK, Even for GCA.

[LozzaSandstrom in reply to Crochetgardener]

Oh I am very near you - I live in Sloley just the other side of Buxton! How sad for you - I am with Coltishall Surgery and they have always been an amazing doctors - its big now too and fairly easy to get an appointment - very good luck with your tapering - the schedule they gave me was ridiculous they expected me to be off it all in no time but thats what they are told and its an old idea now by all accounts and not achievable for most people. Very good luck

[Seacat30 in reply to Crochetgardener]

I find it hard to accept that Norfolk GPs are diagnosing a serious autoimmune condition over the telephone! What is your blood tests came up with inflammatory factors for another reason? Has there been no follow up at all?

[LozzaSandstrom in reply to RoRee]

Hello to you = my steroid card was a photocopy that the doctor did and wrote it out by hand, on A4 - I have no idea where it is - it was a rough copy and is probably in a pile of bills and other paperwork now - good luck with your tapering

[Crochetgardener in reply to LozzaSandstrom]

Hello Lozano, yes you are very near me, fancy a coffee and an exchange of PMR experiences ?

[LozzaSandstrom in reply to Crochetgardener]

Absolutely - I will try and contact you direct!!

[DorsetLady PMRGCAuk volunteer in reply to LozzaSandstrom]

You should have a proper card -and carry it with you. It’s for your own safety should you be in in accident or similar and are treated when not able to tell medical staff you are on steroids.

See this for new emergency card -pmrgca.org.uk/steroid-emerg...

If you are a member of the charity they will send you the blue card every year when you renew your membership…

[LozzaSandstrom in reply to DorsetLady]

Thats super helpful thank you