What’s a Girl to Do?

[Pipalina]

I am awaiting another (triaged) referral to rheumatology as recommended by the endocrinologist I have seen for many years. I was rejected by rheumatology on the first triage and referred to the CFS/Pain Clinic. I felt pretty insulted by that as I have been managing my ME pain for the last 26 years on my own – grrrrrr!!!!!

My Endo advised my GP that at my recent eye clinic appointment they had indicated – albeit in a conversational way – that there might be some GCA activity going on. This came about because I had told them I had recently been diagnosed with PMR.

The eye hospital have been monitoring me for the last year or so for unexplained muscle pain in my right eye. They accept something is going on and have done lots of tests/MRI scan but it hasn’t manifested itself in any way that, at this stage, they can identify. I’m completely good with that and grateful that they are keeping a check on me. I don’t have any other obvious signs/symptoms of GCA.

However, I am also a little confused because I thought any indication of GCA might mean I had a fast track referral. Clearly, not so, as a couple of weeks down the line I am still waiting to hear anything regarding an appointment to rheumatology.

In the meantime, my current 10mg Prednisolone dosage certainly isn’t keeping the inflammations under control and the only way I can function in any meaningful way is to write my daily “to do list” then delete 80% of it!

The management of this condition is very different from my “pacing” of my ME – if I rest long enough my ME blip will subside – with PMR it keeps on giving!

I'm struggling as to the best way forward...

[Angiejnz]

Sounds like very patchy health care, sorry you are experiencing it. Wait for the replies from the guru's as their advice is good as you can get. Take care

[PMRpro Ambassador]

I am fairly sure that to get a fast track referral your doctor must contact the fast-track set-up at a hospital that has it in place. If your local hospital doesn't have one - then the doctor must phone the rheumatologists there and discuss it. Where are you (-ish) and what is your local hospital to which you were referred?

The way it is expressed in the letter probably also has a great deal of influence and listing vague symptoms that could be GCA probably won't cut the mustard with a lot of opinionated rheumies who have their own image of what GCA should look like.

[Pipalina in reply to PMRpro]

Morning to you...and thanks for your reply. I live in south Nottingham and believe I will have to attend either the Queen's Medical Centre or Circle Treatment Centre - assuming they are prepared to accept the referral this time!

As you say, much depends on what my GP has said in her letter. I don't believe she has fast tracked me as she told me I should hear something within four weeks. Although, I have no idea beyond that time how long I might have to wait for an appointment.

I'm not trying to jump any queues but just feel a little frustrated trying to find the best way forward in managing my PMR symptoms on a day-to-day basis. I have written to my Endo saying I am struggling on a dosage of 10mg and cannot reduce to 9mg next week as he suggested!

[PMRpro Ambassador in reply to Pipalina]

No, she hasn't asked for fast-track for query GCA - that would result in an immediate appointment, usually within 24-48 hours.

After a bit of searching I found this

nottinghamshire.gov.uk/DMS/...

which suggests on p11 that query GCA would be referred to the Rapid Access Clinic (it is mentioned under the 24 hours column) under Nottingham University Hospitals. There is a phone number at the top of the graphic for advice.

But as you are already under the Eye Hospital - why aren't THEY doing something?

[Pipalina in reply to PMRpro]

Amazing stuff - thank you for taking the time to find it!

At my last appointment at the Eye clinic I saw one of the consultant's team; probably a Registrar. It was at the end of the review that GCA was mentioned and she almost seemed to be mulling it over to herself that maybe there was some GCA activity going on...

She then told me that if I had any symptoms of GCA to get myself to eye casualty immediately - and that was that. I don't believe I have GCA but would have no hesitation in going to the eye clinic if I did experience any symptoms - or call the number you have found.

However, when I saw my Endo the following week and mentioned the conversation to him and her comments about GCA he immediately wrote to my GP asking her to refer me to Rheumatology for expert advice. He felt mentioning it would add weight to the referral.

I'll jut have to learn to be more patient!

[PMRpro Ambassador in reply to Pipalina]

It is possible the eye doctor is unaware of the situation in rheumatology - which is suffering a dire shortage of senior staff, even internationally, which is what leads to such long waits. I'd be inclined to contact the eye hospital and ask your usual team for advice in view of the endo's opinion.

[Pipalina in reply to PMRpro]

Thanks good suggestion whilst I wait to hear from rheumatology. Muddying the waters a little is that the fall I had a couple of weeks ago was to the right eye so I have more pain in that whole area than normal, although it is settling down.

Thanks again for your advice. Best wishes to you - Kathy

[Mike1964]

Hi Pipalina, Nothing meaningful to add sadly, but just wanted to give a bit of moral support and to wish you well.

[Pipalina in reply to Mike1964]

Hello Mike - the moral support is greatly appreciated - many thanks and good wishes to you...