Awaiting definite diagnosis

[janodorset]

In February had sever headache and strange sensitivity around scalp - a hairdressers appointment was extremely uncomfortable. GP had no idea 'come back if you get worse'. 2 weeks later returned to see a different GP who reacted quite differently - said he needed to suspect temporal arteritis - warned of risk of blindness and prescribed 30mg prednisolone daily. After 4 days when I reported some improvement he said he would refer to rheumatology - the same department I see for rheumatoid disease. Waited 2 weeks for appointment to be told too late to do a biopsy, but was concerned that I reduce the steroid dose. 30mg was just keeping symptoms under control, but within days of reducing to 25mg pain was so severe in temporal area GP said go back to 30mg, but try to reduce again after a week. 4 weeks on and still no indication that I will get a proper diagnosis. My GP has been doing his best to manage the situation, and trying to get a response from the hospital, but with Easter and now another bank holiday, nobody seems to be available. Has anyone been in this situation? Any advice?

[DorsetLady PMRGCAuk volunteer]

Hi,

You really need to be on the starting dose (30mg is at the lower end of recommendation for GCA) for at least a month I would say, so no wonder you had a return of symptoms after your reduction.

Doesn't sound as if GP is confident about treating you, so he should be pushing hospital for Rheumy appt. GCA should be treated as an emergency, although it very often isn't.

Think all you can do is badger the surgery to ensure his referral has gone to hospital and also check if he's requested you as an emergency. Or, if you have a contact number for Rheumy Dept check if they have received any paperwork. Unfortunately, the onus is on patients very often, and it shouldn't be.

Not sure what dose you're on at present, but if you do have any return of symptoms then either back to GP or local A&E.

[janodorset in reply to DorsetLady]

Thanks for your reply. I rang the hospital 4 days after the referral was sent - the relevant doctor was away 'for a week or so' and clinical lead said it could wait for his return. My GP is out of his depth with this, I think. He thought 30mg pred would completely resolve all symptoms, but I now know it isn't a high enough dose. We do seem to have a problem in this area in getting hospital referrals for all sorts of specialities at the moment.

[DorsetLady PMRGCAuk volunteer in reply to janodorset]

Hi again,

Can well imagine B & P hospitals in a bit of a turmoil at present, not sure that DCH is much better - but that doesn't help patients does it? Hopefully you'll get more success at Southampton General, and not too bad a journey from Ferndown, although you could do without it.

Good idea to stay at 30mg, but as I said- any further problems then off to A&E.

Good luck.

[PMRpro Ambassador in reply to janodorset]

I think the clinical lead is out of their depth too - query GCA is a medical emergency like a stroke or heart attack. Do hope they aren't telling MI patients they'll have to wait a few weeks!

[Whittlesey in reply to DorsetLady]

In agreement, Dorset Lady,

I went through a similar situation in 2012. I have biopsy proven GCA, after 4 months of being diagnosed with migraines ( which I have, in addition to GCA).

It seems you have the symptoms of GCA. DorsettLady's advice is very good. She knows your medical processes and is well advising.

My suggestion, as one who has worked her way through this in the U.S., would be to contact Patient Advocates at your treating hospital and your physician's hospital and explain your dilemma and fears. I would definitely include the fact that GCA ( for which you are showing symptoms) has, as one outcome, blindness.

Contacting the Patient Advocate, when I was recently hospitalized, was responsible for getting the increased medrol I needed during a GCA flare.

I think one of the questions she asked the doctors involved was "will what she asks hurt the situation?".

The doctors answers were " no", I believe.

Shortly I got the increased medrol and the part of eye w reduced vision got better. Thank goodness!

Would absolutely follow the advice given and possibly see if there is a PatientAdvocate available, who can advocate specifically for you.

Luck with this. Positive thoughts on the correct diagnosis and the processes of healing.

All my best,

[PMRpro Ambassador]

Your GP was being a bit of a twit - when he suspected GCA he should have sent you to A&E (not just accident, admissions too) with a letter in your hand asking for a rheumatology opinion there and then. And WHY did a rheumy tell a potential GCA patient on 30mg to reduce asap?

Where are you?

[janodorset in reply to PMRpro]

My GP is usually very good, but I think out of his depth with this. I am in Ferndown, Dorset. In hindsight I wish I had just taken myself to A & E; our GPs here seem not to want to send to A & E. Unfortunately our two hospitals are 'restructuring' their departments. I am asking my GP for referral to Southampton. I have taken decision for myself not to reduce the prednisolone as 30mg was just about controlling matters.

[PMRpro Ambassador in reply to janodorset]

That's my point - the GP's job is to know when they are out of their depth and too many of them don't. A GP managing GCA without any specialist input can be a bit like them trying to sort out a stroke - they have neither the expertise nor the experience to do it.

[Whittlesey in reply to PMRpro]

Yes

[Whittlesey in reply to PMRpro]

Absolutely agreed, Pmrpro. It seems there is too little knowledge of GCA, PMR. And too difficult for some medical professionals to really 'listen' to their patients and hear them.