How common is GCA

[Juneelizabeth]

Recently diagnosed with GCA in September I asked at my GP surgery how many other patients in the practice have it and was told I was the only one in a practice of 32,000

I have been to the hospital Rheiumatology clinic in Sept and put on a sliding scale of prednisolone and am currently on 17.5 mg/ day which will reduce in monthly steps to

15,12.5,10 then 1 mg increments per month .

I've not had any follow up apts made at Rheumatology so feel a bit as if I'm on my own here

I'm also an insulin dependant diabetic who thinks I may. A type 1 ( adult onset) who has been misdiagnosed as type 2 and am having tests ( Cpeptide and GAD) at my annual diabetic review to help clarify this

I've also had bowel cancer which was successfully treated .

I would be interested to know how other GCA patients have been treated. Y their Doctors or clinics

Cheers June

[Sima1952]

Hello June, in answer to your first question, there are two of us at my surgery, which l think has approx. 6000 patients.

Sally

[Juneelizabeth in reply to Sima1952]

Thank you Sally

Yes It probably is a bit random because reading internet info the incidence was about 1 in 5000

Being the only one I feel on a bit of a limb as the practice may not have much experience

Do you go to a vasculitis. Clinic on a regular basis or are you under the GP who takes regular blood tests for CRP and ESR to. Monitor your progress?

Are you on steroid meds and what dose ?

Thank you for your support

June

[Sima1952 in reply to Juneelizabeth]

Hi Jjune,

I'm under Addenbrooke's Vas Clinic. My initial problem was with my eyes and l was under PAH in Harlow, a blood test showed a P-ANCA result and l was sent to to Addenbrooke's.

As an aside, I live on my own and have been ill a couple of times - enough to have to phone my GP - they won't come out to me as l live in another post code area - and have had to rely on my siblings for help; two of whom tried to get me to change GPs! When l moved to my present address, l stayed with the GP l had been with for years as they are the ones with Vas. experience, although the nearest one is just around the corner! Once l had recovered l then spoke to them and explained the benefit of staying with the GP l have.

I know you have other replies, please take note of the one's from Vas.UK and check out their website as it is very informative and certainlty better than the ones l first found when l was told l possibly had Vas. which after 3½ years has just been confirmed.

Sally

[PMRpro]

It is rare enough to be classed as a rare disease! Most GP practices will only have a couple of patients - if they have any at all and many GPs will never have met it in their career.

You will find a lot of GCA patients (relatively speaking that is) over on the dedicated PMRGCAUK forum here on HealthUnlocked and I'm sure they will all be delighted to tell you their experiences, including that of recovery and getting off pred:

healthunlocked.com/pmrgcauk

We also have support groups across the UK - there may well be one near you:

pmrgca.co.uk/groups/

[Juneelizabeth in reply to PMRpro]

Thank you for your helpful reply

June

[Hidden]

Hi,

The clinical guidelines for GCA state that it should be managed by an appropriately experienced Consultant not a GP. Vasculitis is a complex disease which makes me suspect that the Rheumatology Consultant you saw may not understand it very well given that they haven't organised further appts. It might be worthwhile phoning up the Consultants secretary or specialist nurse to query this.

What large vessels has your GCA affected?

[PMRpro in reply to Hidden]

There is a lady on the HU forum who was finally diagnosed with LVV in the aorta by the acknowledged king of GCA in the UK on the basis of an MRI (after he had rejected GCA on the basis of a negative TAB). He sent his minion with a prescription for pred and a follow-up in 6 months. If he didn't monitor his patient properly, how can you expect others to?

[Juneelizabeth in reply to PMRpro]

Thank you .I know the NHS is overstretched and one area falling down is training to community staff in GPS as well as other disciplines

I also find that if you have other serious conditions the different depts don't always.communicate effectively

You are seen as a disease and not a patient who may have co existing co morbidity risks what need to be linked up ...maybe too much like hard work

I'm not blaming the staff I'm blaming the system

Many Vasculitis patients LOOK well on the outside

If we ran into hospital pouring surface wound bloods and with bones protruding we would get a dramatic response

And yet we may be more seriously ill than the above patients

I am convinced the more informed you are the more responsibility you can take for managing your illness and armed with this knowledge I can ask the Doctors questions starting ??What do you think ? In a non confrontational way as Doctors always Know better than you don't they Ha ha

June

[PMRpro in reply to Juneelizabeth]

There is a programme for educating some patients: The "Expert patient programme". It is mainly aimed at diabetics to help keep them better managed and avoid hospitalisation but is also used for other things I think. It works up to a point - until they come up against the less-educated non-specialists in GP practices and A&E where they may have their carefully maintained notes and procedures scuppered by a jobsworth who obeys the usual hospital protocol and removes their medication.

I am very lucky here where I live in Italy. My GP is rheumy trained and trusts me to know what to do. I don't see the local rheumatologist (he only ever wants to practise his English) but see the Head of Medicine who has a special interest in GCA and PMR and it covers the cardiology problem at the same time. He provides me with print-outs of the latest papers - and we sit and discuss it as equals. He even told me it is a pleasure to be able to talk to a patient who really understands their illness! I feel very privileged.

[Jase222]

Hi, I have MPA and my local gp had to google it ! And he managed to get some info from consultant ! The consultant said in June 2013 there was only 2 other cases in a year that he knew ! And MPA is rarer still.

[Juneelizabeth]

Maybe I should move to Italy .

On the whole though my hospital does give me good. Are but I agree to. E educated is best .Ive got another apt this month at Rheumatolgy so we shall see what happens .

June

[PMRpro in reply to Juneelizabeth]

Hehe - I can recommend it! The weather, wine and food are all rather better than the UK!!!!

[jinasc]

Follow this link for incidence

nhs.uk/Conditions/giant-cel...