Consultation with Prof Rod Hughes

[Tiggy70]

I had a private face to face consultation with Rod Hughes yesterday as I’ve been struggling recently with my PMR. I said I would report back to the forum on my experience. Here goes:

- my appointment lasted 45 minutes. He made me feel at ease, listened to what I had to say then made recommendations.

- although I’ve had a number of flares he said I shouldn’t feel pressurized into reducing my Pred dose and staying on 10mg for a while wouldn’t be detrimental.

- I’m to change my monthly ESR/CRP blood tests to an annual test unless I experience a bad flare as he felt my monthly tests were a waste of time.

- we talked about DMARDS as I’m under pressure from my NHS Rheumy to take one. He didn’t recommend that I try one at this point because of possible side effects and that they only work for a very small number of people. His choice for me should I need one would be Leflunomide.

- he looked at my private DEXA scan results from March 24 and said they were average for a person my age and wouldn’t recommend that I take a Bisphosonate. Instead of my yearly scan he recommended that I have one every three years.

- we discussed other issues such as skin fragility and crazy hair.

All in all he was very positive and emphasized the need for me to try and stay positive too. He said unfortunately PMR has its own agenda and stressing about it doesn’t help. He said using Mindfulness Apps might help with my stress.

As with any doctor consultation I’ve since thought of a least 2 questions I should have asked him but I find that’s generally how it goes. All in all a positive experience. Tiggy 🌸

[DorsetLady PMRGCAuk volunteer]

Good to hear…pity he can’t be cloned!

[Bcol]

Sounds good, hopefully your doc and NHS Rheumy will go along with what he suggests.

[SheffieldJane]

That sounds therapeutic. If only more doctors were like that.

[Sew_And_Sew]

I forgot a couple of things at my appointment so emailed his secretary straight away and has a positive response.

[SnazzyD]

How many people’s journeys would be transformed if they all had that attitude?

[PMRpro Ambassador]

What were your forgotten questions? If we can't help - email Jody his secretary. He is usually very good like that.

[Tiggy70 in reply to PMRpro]

I meant to ask him how to deal with a flare that doesn’t settle so I’m not yo-yoing up and down on pred doses. Would have been interesting to know what he would recommend. I talked about trying alternate day doses and DSNS methods when starting a reduction but he didn’t give a preference. Since seeing him yesterday morning I’ve had some PMR aching in my arms (I know sod’s law). I’ve been on 10mg for 10 days. I should have asked him what next if this flare persists. I could email him but I’ll see how things go over the next few days. I’ve had a stressful week which hasn’t helped.

[PMRpro Ambassador in reply to Tiggy70]

Go back to the last dose - if that is enough, give it a month or so before trying a tiny and slow taper again. Eventually it will work. A flare is almost always because the new dose you have got to is very very slightly too low. And if you persist it won't settle. Step back, patience and trying again is always the best answer. If you have a stressful week, all the more reason to wait until that is past before tapering any further. Even if you are in the middle of a taper. press the pause button and wait it out.

[Tiggy70 in reply to PMRpro]

I’m not sure what that last dose should be. I’ve got into a right pickle!

Basically I was ticking along nicely on 8.5 mg for over 3 months (mid March until 25 June ) when tried a 0.5 reduction using DSNS method. Three weeks in I started to flare and tried a quick Pred burst for 5 days of 13,12,11,10 and 10 as suggested by someone on the forum. It didn’t work so I did 13.5, 13.5, 13, 13, 13, 12.5 and 12 for 7 days. Felt ok so dropped back to 8.5 for 3 days but aching started again. I went back up to 10 for a week then dropped to 9 for 2 days. Aching back again so upped to 10 and have been on 10 for 10 days. Ok until yesterday evening and now aching again (not too bad but definitely there).

[PMRpro Ambassador in reply to Tiggy70]

Have you also changed lifestyle factors? That can be crucial too.

I don't know who suggested the quick pred burst - neither DL nor I would usually say do it like that. You add 5mg to the dose where you flared, so 13mg, but for up to 2 WEEKS. Only once the symptoms have settled do you drop back to the dose above where you flared, 9mg in your case. You got into the yoyo pattern because things weren't cleared out in a calm way,

You don't only flare because of overshooting the dose - which is where you use the flare protocol. You can also flare because the underlying disease activity has ramped up and it is beginning to sound as if that what is happening to you.

[Tiggy70 in reply to PMRpro]

No it wasn’t you or DL who suggested the Pred Burst. Someone on the forum said it worked well for them so I gave it a try. I haven’t really had any major lifestyle changes. This time of year is always more hectic, looking after boisterous grandkids etc and we’ve recently completed a bathroom refurbishment. I’ll give it a couple of days and if the aching doesn’t improve I’ll go back to 13 for up to two weeks. Today marks my 4 year anniversary with PMR. Not sure why but these anniversary days seem so poignant ☹️

[PMRpro Ambassador in reply to Tiggy70]

Well all that is loads to trigger a flare and I doubt any of us would be surprised at the result! You have to rest and pace yourself and when life ramps up the demands - you have to be strong in setting boundaries or you might get away with raising the pred dose slightly. Although that isn't really advised - it can get you into bad habits.

[Bridge31]

Mirrors my experience of Prof. Hughes.

Listens, is empathetic and makes sensible recommendations in partnership with his patient.

[Tiggy70 in reply to Bridge31]

Yes, I couldn’t agree more.

[PMRpro Ambassador in reply to Tiggy70]

And if everyone was like him, there would be far less pred required and a lot more happy patients!!!

[piglette]

Wish other doctors would copy him in trying to reduce things like blood tests and drugs when they are superfluous to patients’ needs.