Newly diagnosed - what do I need to ask my consultant on first visit?

[Littlejan22]

I am waiting to be officially diagnosed been on 10 mg pred. reduced in 3 months since symptoms started in October, I have been bruising lots lately, I have had to go private as the wait for NHS referral is 9 to 12 months because of Covid, any advice of what I should ask the consultant or what will happen on my first appointment 11.1.21 thank you Janet

[MrsNails]

Hi Jan

Do you have any recent Blood Test Results, if so ask your GP for a copy to take with you as they can’t access the NHS Sites to look them up.

Plus write down a timeline & record of Pred and it’s effects/benefits.

Good Luck 🍀

MrsN

[Littlejan22 in reply to MrsNails]

Not had one done since first diagnosed, I have asked for a copy of my medical records which I collect tomorrow since it first started thanks

[Littlejan22 in reply to MrsNails]

I have been bruising heavily since I started and my mood is really low! Thought this was normal but hard to tolerate with the pain

[DorsetLady PMRGCAuk volunteer in reply to Littlejan22]

Bruising is part and parcel of Pred unfortunately - post about it just yesterday. Try using arnica gel or cream for that, and also a good moisturiser for skin generally - DoubleBase is recommended - all chemists, online, and sometimes GP will prescribe!

Moods can be affected - by medication as well as the uncertainty of the illness.

Pain - would say you’re not on enough Pred - make sure Rheumy knows that.....other than that, just listen....he should be doing the explaining, if he’s any good...and if you don’t understand, ask!

You’re paying.

[Littlejan22 in reply to DorsetLady]

Thats great thanks, I will record the conversation and have questions when I attend and I was seeing a reduction from 15mg (initial medication) to 12.5mg after 6 weeks, and don't to 10mg after 3 months, to be honest I have had 2 children many years ago but this is horrendous pain it feels like there is a small child sitting on my shoulders feel down all the time with the pain x

[MrsNails in reply to Littlejan22]

The Rheumatologist may not be happy about you recording the Consultation (l worked in OPD - Private & NHS) but they will be happy to send you a copy of the letter he sends to your GP

[PMRpro Ambassador in reply to MrsNails]

That's why I said to ask. Many are perfectly happy to allow it.

Given some of the letters I've had in the UK - I wasn't present at the consultation ... They rarely answer the questions you have afterwards.

[piglette]

When I first went to a rheumie for diagnosis, he organised the blood tests which cost a fortune as he did every one under the sun. If you can have some done before it would be helpful although you do not have much time. I would have thought three month old blood tests may need to be repeated.

[Littlejan22 in reply to piglette]

Thanks

[PMRpro Ambassador]

Low mood is also often part of the autoimmne illness and then you have the uncertainty to deal with too. First of all sum up your doctor - some are happy to share their thoughts, others less so.

Like DL I'd suspect you aren't on enough pred and to be down at 10mg after 3 months is a bit optimistic.

It may help to take a notepad and make notes - or ask if you can record it on your phone maybe? That way you can replay and check you understood things correctly. But always ask.

[Littlejan22 in reply to PMRpro]

Great idea about recording the convo, as I am so nervous about the outcome, just heard about the potential development to GCA scared of that

[DorsetLady PMRGCAuk volunteer in reply to Littlejan22]

Getting GCA is not a given, but it is a possibility- but don’t let it overshadow everything. Just be aware.

[PMRpro Ambassador in reply to Littlejan22]

Worry about things when they happen - not before! It is just important to know about it so you don't get caught unawares.

[MrsNails in reply to Littlejan22]

Is there someone who can go with you? What are the Rules? I know on the NHS it’s pretty much Patient only except in exceptional circumstances.

[Cross-stitcher in reply to MrsNails]

Coronavirus regulations may have changed things but, in the past, I have acted as a "patient advocate" for my father, for my mother and for an elderly (and unrelated) neighbour. I was allowed to attend appointments and take notes, and to remind the patient of pre-prepared questions that they had forgotten to ask as well as requesting further explanations.. Currently, I always ask my husband to attend "serious" appointments with me and have never been refused.