GCA?

[Jamie751]

I have had PMR for over three years now and had been hovering around 2.5 Pred until I had another flare up and increased to 3.5 about 6 months ago. This seems to have kept the symptoms at bay, although I still get very tired and do much less than I was, even two years ago.

Just recently - within the past week - I had noticed some lumps on my forehead, which corresponded to prominent blood vessels. Alarm bells started ringing and I researched GCA on the web and concluded that urgent action was needed.

On visiting this forum, someone mentioned Kate Gilbert’s book on PMR and GCA, so I bought a copy straight away.

I went to see the GP the next day and a blood sample was taken. To do them credit, the surgery took my concern very seriously and I had a conversation with the GP last evening, within 48 hours of the blood test. We concluded that, as the ESR and CRP readings were only slightly raised; I had no head ache or claudation, and most importantly my eyesight had not got markedly worse, that a dramatic increase of Pred was not justified - yet. But if my eyesight does deteriorate, I am advised to dial 999 straight away. It’s a scary scenario I must say.

I have spent some time over the last couple of days reading Kate’s book, which is refreshingly clear and honest. Whilst I am not at all comforted by what she writes, I am a lot better informed as to the nature of PMR and GCA. I hope to goodness I do not have GCA, but I am concerned none the less about the lumps in my forehead.

I guess that requesting a referral to a rheumy would be laughed out of court, with the NHS in its present state. But should I try, do you think?

[PMRpro Ambassador]

Oh definitely try - if there is any question of GCA then you will need to see one anyway.

YOu are in the UK - where? Maybe there is a fast-track set up near you.

[Jamie751 in reply to PMRpro]

I’m in Mid Devon. The GP didn’t offer referral to a rheumy, so perhaps I should ask for that. It was left that I would contact the surgery if symptoms develop.

[Jamie751 in reply to PMRpro]

The surgery has recently been taken into “ownership” of the local NHS Trust, so perhaps that means I may have better access to any fast track procedures that may exist.

[PMRpro Ambassador in reply to Jamie751]

There has to be one in existence!

[SheffieldJane]

Definitely, GCA is a serious condition. I also have a bumpy forehead and a recent GCA diagnosis. Let us know how you get on.

[Jane-s]

Just an observation. I saw my GP with this terrible headache in October 2018 . My blood test were normal .About a week later, the headache was worse, ‘lumps ‘were all round my head. The GP asked if I minded if we repeated the blood tests and this time the ESR and CRP were ‘sky high’.

The GP rang me ,I started on Prednisolone 40mgms straightaway ,the headache disappeared in hours and the ‘lumps ‘had gone.

I wonder if it’s best to wait for the blood result before treating with steroids.?

[PMRpro Ambassador in reply to Jane-s]

No - up to 20% of cases never have raised blood markers and there is a condition defined as occult GCA where there are no signs or symptoms before visual effects are seen. By which time it may be too late.

ncbi.nlm.nih.gov/pmc/articl....

[paulst955]

Taking a high dose of pred IE 40 mg will not kill you but going blind would be terrible. Just my thoughts GCA is very dangerous. I have managed to keep a surplus supply of 5mg tablets just in case. Never used them yet thank god, hope you get on OK.

hopkinsvasculitis.org/types....

[PMRpro Ambassador in reply to paulst955]

Check their use-by dates.

[Carriemetz in reply to PMRpro]

Yes! It’s a good - and I ‘ve found, comforting - idea to keep a strip on the bedside table, but they do need replacing regularly!

[paulst955]

I've got a couple off extra boxes but I use the oldest ones first so always have a surplus

[Jamie751]

Well, a lot has happened in the past 3 weeks, largely thanks to your advice and support. Contrary to instructions not to do so, I sent an email to the surgery and my GP and thanked them for their prompt response. I quoted PMR/GCA’s advice that I should be fast tracked to see a Rheumy and somewhat to my surprise I had a call several days later from the young doctor who I had first seen (he’s going to train as a Rheumy) who said that he would ask for an appointment with a Rheumy in Exeter - that was on 7th July. I wasn’t holding my breath. On 23rd July (Yesterday) I had a call from the RD&E Rheumy Dept to say could I come in that afternoon, which I did and saw a very helpful Rheumy who scanned the lumps in my head and under my armpit and concluded that I have GCE and has put me on 40 mg Pred straight away.

Interesting thing - the Rheumy was impressed that I had taken advice from PMR/GCA, having been to one of our meetings in Taunton. Although he cautioned that “temporal bumps” are not uncommon in people of my age (76) he could see from the scan that there was inflammation in parts of the arteries. His experience suggested that I have early GCA and that urgent action is now required. Thank goodness I did not take the GP’s initial advice (see previous message). I was also impressed that the young doctor had passed copy of my email to Surgery to the Rheumy.

The morals of this story are that one should persist in asking for a referral to a Rheumy, and also that everyone should read Kate’s book!

[PMRpro Ambassador in reply to Jamie751]

Impressive - a sensible optician and a clued up GP. Albeit a locum because if he is training to be a rheumatologist he won't be there forever. But he will be a useful addition to the world of rheumies ...

[Jamie751 in reply to PMRpro]

Interestingly, the “young doc” works for the local NHS Trust, who now run many of the GP surgeries in this area. The more senior doc’s in the surgery were much more inclined to “laise faire” and held the view that the condition would go away if left alone. Day 1 on 40 mg Pred and I’m noticing the difference already, but worried about the effect on the T1D. Perhaps I should revisit the paleo diet!

[Jamie751 in reply to Jamie751]

... I meant T2D

[PMRpro Ambassador in reply to Jamie751]

Well, low carbs at least!!!

That is interesting - how's that work?

[Jamie751 in reply to PMRpro]

If you read Kate’s book, she went on what seemed to me to be a paleo diet when she discovered she had T2D. Geoff Bond, a Yorkshireman living in Cyprus (more sun there) wrote a very good book about it called Deadly Harvest.

[PMRpro Ambassador in reply to Jamie751]

If you read much of the forum you will note a theme running through - low carb! It reduces the risk of developing steroid induced diabetes and for many reduces or avoid weight gain due to pred.

[Jamie751]

... Further to my last post, I arranged to see my optician very soon after my concern over GCA was raised, in the early stage of lifting lockdown. The eye test was ok, which alleviated my concern somewhat, but the optician advised that eye problems with GCA could come on suddenly, so not to be too comforted.

[Jamie751]

I note what you say and agree with the sentiment but I find the expression “low carb” to be misleading. Absolutely everything we all eat has carb’s in it, to a greater or lesser degree. A more reliable guide, for me, is the Glysaemic Index, published by Sydney Uni in NSW. That I do respect.

[PMRpro Ambassador in reply to Jamie751]

That is not true - there are a lot of foods which have no or very little carbohydrate in them and the approach we advocate is not NO carb but LOW carb. The glycaemic index is a different concept. altogether, In the case of pred, carbs are carbs, whether high or low GI.

[Jamie751]

Diabetes.co.uk has been on about this for years and I cannot for the life of me understand what they mean by low carb’s - I’ve asked and not had any proper reply. All the recipes they promote seem to have a lot of carb’s in them! I think we’ll have to agree to differ on that one

[PMRpro Ambassador in reply to Jamie751]

If you want to understand what low carb means (as opposed to keto) then this site is excellent:

dietdoctor.com/

I'm surprised that you say diabetes.uk has been on about low carb "for years" - or it hasn't percolated through to the front line The low carb approach in diabetes - although an absolute no-brainer - hasn't been mainstream until the last few years in parallel with the Newcastle and Glasgow research on the use of very low calorie diet to reverse T2D. However - you don't need to ask and wait for a reply - they state it quite clearly on their website

diabetes.org.uk/guide-to-di...

where they say "less than 130g carb per day". Since an average carb intake these days may be as much as 450g carb - it soon mounts up - that is low carb.

In the context of PMR/GCA and pred though low carb needs to be lower for many of us. But that is a different context.

[Jamie751]

Thank you - I will look at those websites.