GP telephone chat

[Fiddlemum]

Hi, diagnosed Dec 21 started on 15mg pred. Worked well . Got down to 8 mg in standards nhs gp taper. Started feeling rotten again sore etc…… persuaded gp to go back up to 10mg. I think it’s stopped the deterioration, but don’t feel as good as I did when I started on 15mg. I have very sore knees and feet. GPmsays that’s not really pmr symptoms- it’s an upper body issue. I have no idea anymore, what to expect- I’m 63- what is normal wear and tear? He says it sound more osteoarthritis- it doesn’t feel like that to me. Feels like pmr. I am confused to say the least. Bloods down to normal- but then I’m on steroids. Thankfully he is referring me to rheumatology. So, now the question is - do I wait for nhs or do I take the hit and go private? My gut tells me the nhs is safer , but I amon the standard taper now - so 9mg from tomorrow. No idea how long the wait will be for rheumatology appointment. I live in the Glasgow area. Any advice / thoughts would be gratefully received. Alison xxxxxxxxxxxxx

[Seacat30]

Was the referral marked as urgent?

[Fiddlemum in reply to Seacat30]

Don’t know but I doubt it. When you ask that it makes me panic. But then I panic easily these days with this whole pmr confusion!

[DorsetLady PMRGCAuk volunteer in reply to Fiddlemum]

Don’t panic-what you describe doesn’t sound as if it’s urgent -it might be to you, but not to the nhs

[Seacat30 in reply to Fiddlemum]

I just meant that you will get seen faster if they bothered to mark it as Urgent. I got seen by NHS Rheumatology in 2 weeks because my GP put it through as Urgent and that was a year ago in darker Covid times

[PMRpro Ambassador in reply to Seacat30]

Not much - it depends on the guidelines on waiting times. It means you will be seen sooner than routine. To be seen quickly is an emergency referral. Urgent can still be months.

[DorsetLady PMRGCAuk volunteer]

NHS v private?

Not sure how long nhs wait will be -and it may well be same Rheumy you see anyway, who may then transfer you back to nhs system.

.

GP is wrong in saying PMR is just upper body as photo shows -and although picture doesn’t show it, many complain of feet issues.

You may have been following guidelines-but they don’t work for everyone-as often mentioned on here. Plus from 10mg -they say -1mg reduction every 4-8 weeks depending on patients wishes and disease activity -so many reduce by 0.5mg a time-easier on body.

And tbh if you are not happy at 10mg I wouldn’t be reducing tomorrow.

The idea of tapering is to feel as good at each lower dose as you did at starting dose -and if you don’t, then you don’t reduce again until things have stabilised.

Sometimes that means staying at current dose for a bit longer, sometimes means increasing (as you did). But if 10mg didn’t work, then you may need slightly more rather than less.

Maybe have a look at this for your info -

healthunlocked.com/pmrgcauk...

Just for info is he sending you for X-ray if he thinks it’s osteoarthritis?

PMR etc

[TheMoaningViolet]

I saw someone privately at the beginning of my troubles because I was told the NHS referral would take a long time. This turned out not to be the case (it was prior to the pandemic), and I was even given a PET CT which was amazing and would have been unaffordable privately. But, it was still useful to get all the tests under the sun done to eliminate some other possibilities. The private rheumy also gave me a Depo-Medrol injection which was amazing for a few weeks. I would say see someone if you know exactly what you want to get out of it. Insurance will not cover you for ongoing treatment of chronic conditions like PMR and you are definitely better off finding a good NHS rheumatologist to work with.

[PMRpro Ambassador]

He's wrong I fear - it is NOT "just" an upper body problem and feet and hands can be involved too. Leeds did a study and concluded they are - unfortunately they haven't published it yet! Knees are also typically involved, Part of the knees and feet could be due to gait being affected and putting strain on them but there is also inflammation in the knee structures. Show him this:

academic.oup.com/rheumatolo...

It is hardly new - but they don't look for it and PET-CT is rarely done at diagnosis.

There is also no "standard" taper - just recommendations put together by people who have never done it themselves. And every single one I have ever seen has a very important codicil: they must be adjusted for the individual patient! Which is usually ignored.

[MiloCollie]

Don’t reduce your pred tomorrow if you’re not right. Stay on it til you see rheumy