How to make an appt with Prof Rod Hughs

[Bennijax]

I've been diagnosed with PMR since 09/19. On oral preds since March 2021. Started with 7.5mg per day. Never got to lower than 7mg. Now on 11mg. per day. I have no NHS rheumatologist looking after me now, and my GP is unable to help other than to prescribe the prednisolone.

I'm suffering more and more, the Pred dose is going up, not down, with more and more issues. Eye problems, itching, pain and horrid aching, fatigue and exhaustion, digestive issues, depressive thoughts. I'm soon 77 years. Live alone. I am no longer able to improve the situation by myself, despite initial, radical diet changes, life changes that have helped, but cannot help further.

I feel I am starting to be out of agency in helping myself. A year ago PMR Pro recommended me to Rod Hughs but I didn't make contact because of the fee level. This morning I went online to make an appointment on his website but various app type options appear, either at a hospital or other, each with own fees. How can I get to speak with him direct without going through these gates? Can someone advise me?

I suppose I am becoming desperate for help.

[SnazzyD]

I!m so sorry you feel so awful. I can’t help with your main query, but have you had your vitamin D level checked recently?

[Bennijax in reply to SnazzyD]

yes, I had a very comprehensive blood test done two weeks ago and strangely the results are nearly all normal, and ESR and CPR showed no inflammatory markers. Vit D I take Mon -Friday as a spray only tongue.

[SnazzyD in reply to Bennijax]

Did they check the vitamin D level though? Supplementation dosing isn’t always enough, it wasn’t for me. I’m not saying this is the cause of everything but it affects the whole of you on every level if it is low.

[Bennijax in reply to SnazzyD]

I will check this.

[suzy1959]

I am with Rod Hughes and got an NHS referral through my GP even though I am out of his local area. Not sure if you can still do this but worth asking the GP.

Otherwise, you do need to make an appointment through one of the hospitals/ clinics he works at. I had to do this after lockdown because I had got lost in the system, but he soon put me back on his NHS list. Well worth a consultation.

[Bennijax in reply to suzy1959]

Which one is better, via 'top doctors' or another app?

[DorsetLady PMRGCAuk volunteer]

Have a look at this -

topdoctors.co.uk/promo/doct...

[walrond]

I rang his secretary 01932 877313

[PMRpro Ambassador]

If you had read further down the other thread you would have seen the discussion about those options and the post with Jody's phone number and up-to-date email as of 2 months ago:

[e-mail]

The online option on topdocs didn't work for someone - they were given an appointment online but when they phoned Jody she had had nothing so the appointment didn't exist. Jody sorted it out.

[Bennijax in reply to PMRpro]

I did find this, thank you so much

[AnniesRyder5]

this is so interesting. Do we not need a GP referral to see him?

I was diagnosed in March 2020, my first rheumatologist appointment was September 2022 and my next is due in April. I am aware there are PMR patients with worse symptoms but I’m struggling. She made it clear that on a scale of 1-10 I probably warrant an importance rating of 2. She expected me to be down to 5 by Christmas and to see continued tapering thereafter.

She will obviously be very disappointed if I’m still at 6mg when I see her in April!

I have tried to taper many times but I’m comfortable on 6mg. However even reducing to 5mg leaves me exhausted and depressed, ill - humoured. My legs stop working and even my gastro/crohns gets worse. I try to avoid confrontation of any kind because if I do get ratty I get awful reflux reaction and intense pain across my middle.

So to cut to the chase would the more experienced readers reckon Mr Hughes would see potential in me for improvement?

Many thanks

Ann

[PMRpro Ambassador in reply to AnniesRyder5]

"She made it clear that on a scale of 1-10 I probably warrant an importance rating of 2"

That would have been enough for me to close the door as I left and never re-enter her room! Appalling. What about your GP? A good GP beats a rubbish rheumy any day.

However - that experience at 6 to 5mg could well all be due to adrenal insufficiency and the only way to get past THAT is sustained attainment of well under 5mg pred. Being still at 6mg after barely 3 years is not bad at all even if she doesn't think so.

You do usually require a referral letter from a GP even to see someone privately but if you were to ring Jody she will explain how it all works.

[AnniesRyder5 in reply to PMRpro]

thanks again and more to think about

[PMRpro Ambassador in reply to AnniesRyder5]

Where are you? Have you discussed it with your GP or even the practice nurse - they are often far more realistic about PMR

[AnniesRyder5 in reply to PMRpro]

I live near Leicester.

I’m seeing the GP on Friday to discuss my recent private pain relief treatment for knackered shoulder. They don’t like you raising a subsidiary topic do they !

But I will try !

I’m a typical older patient with several issues!

[PMRpro Ambassador in reply to AnniesRyder5]

Which in most cases are relevant to a PMR diagnosis...

[Patsy14]

I am having good advice from a PRM support group, would advice you to try contacting a support group in your area.