protruding arteries

[stickychicken]

had an appointment with consultant today who had 3 students in with him which I have no objections to, however during my examination he told the students that the arteries are usually protruding in temporal arteritis just wondered if anyone did have them. I feel my appointment was a waste of time, I felt like he thought I was lying. A couple of weeks ago I had to put up my dose of pred back to 40mg from 30mg because I was in so much pain after advice from doctor at 111. I'm now back down to 30mg but consultant today told me not to put it back up again for a LITTLE pain but to take some painkillers and go get a blood test done

i

[lesley2015]

Hiya - my consultant could feel mine were inflamed when he diagnosed me - especially my left temple artery - but I had had GCA for about 18 month by then.

Only we can truly say how we feel and I don't believe anyone would make this up!! So if you are in pain make yourself heard!!

Best wishes

[stickychicken]

I also have pain in my hip which my GP thinks is bursitis but consultant says cant be because of the dose of steroids I am taking

[PMRpro Ambassador]

Sorry to have to disagree with the supposed experts, but it will surely depend which arteries are involved - and it doesn't have to be the temporal artery. If the temporal artery is involved fair enough - if it isn't...

Like your bursitis, stickychicken - the blood supply to the bursa is poor so oral steroids won't necessarily get high enough to deal with it fast. A local injection of steroid works far better. I had bursitis for months after starting pred (only 15mg to be fair) and it returned while at 20mg Medrol and then the local orthopods didn't hesitate to give me a steroid jab.

Time for a second opinion maybe? Or can your GP provide the needful? And who is the consultant to judge what is a little pain? It isn't his...

[stickychicken in reply to PMRpro]

I'm sure my GP will sort out what is needed he is very good and understanding too

[PMRpro Ambassador in reply to stickychicken]

Which is always a positive in this game...

[Retailmonkey]

My confirmation of GCI-PMR was two weeks ago at the end of nearly a year when there seemed to be lots of good reasons why I was feeling the way I was (everything from my age, the way I was sitting at my computer through to somebody trying to put a case in the overhead locker on a plane and dropping it on my head!!). In the end I actually self diagnosed as a result of very swollen veins in my temples and watching a episode of "Dr Martin" on the TV in which he diagnosed that his aunt was suffering from Temporal Arteritis. That set me off on the internet to find all I could (including this great forum) and calling the doctor, going back through the sysmptoms and us both agreeing that this seemed the answer, blood test the same day, answer the next working day and her on to the local hospital with a referal hoping they would see me the next day. Straight on to 40 mg of Pred and an immediate reaction. Took two weeks to see the consultant but, luckily, my local hospital is in Oxford and they are a leading user of ultra sound and that clearly showed the GCA. Talking to the consultant she indicated that, whilst the scan is the ultimate indicator, symptoms are a major indicator (and mine were classic) with the blood test coming a poor third.

Whilst not everyone has the swollen veins, physical symptoms are really important and it looks like the development of these scans are very important to speedy diagnosis. Even though I had been on Pred for two weeks the swelling was quite clear in my temporal veins and also in the auxilliary ones under my arms. Interestingly they asked me to go back in the following week to act as a guinea pig for a training course for 8 overseas doctors who were being trained in scanning techniques. The swelling had reduced but all 8 of them picked it up despite their inexperience.

Doctors (and even consultants) still understand little about these conditions and their treatment. All of our experiences are different so we have to be persistent in pushing for a positive diagnosis and broadening the knowledge of the condition.

Now on my first week of Pred reduction (40=>35) so it is going to be interesting to see my bodies reaction

[PMRpro Ambassador in reply to Retailmonkey]

Please folks - I may sound nitpicking but it isn't VEINS that are involved in GCA, the name gives the clue, it is ARTERIES. There is a big difference.

[Retailmonkey in reply to PMRpro]

Sorry for affending your sensibilities. I obviously understand the difference, the implications of that differenceand where the problem occurs (though it is my understanding that you can get the cells in both) but in common parlance most people refer to the veins in their temples or the veoins in their arms even if they are actually refering to arteries.

Long live pedantry!

[PMRpro Ambassador in reply to Retailmonkey]

No, veins do not develop the giant cells, they are not found in all arteries either. According to histology textbooks, they only occur in the arteries that have an elastic layer to the structure of the artery wall.

Blood vessels would seen the obvious terminology!

[Retailmonkey in reply to PMRpro]

Blood vessels seem like a good compromise!

[PMRpro Ambassador in reply to Retailmonkey]

I was discussing it with my husband last night and while doing so realised WHY it had bothered me.

The temporal artery, which is the one people should be worried about, runs at the side of the forehead, along the hairline usually. Towards the centre of the forehead are two veins that usually run slightly sloping top to bottom (in particular). These are often dilated and obvious - they are absolutely nothing to worry about in the context of GCA - but I think that often these are what people see and panic over.

You and I know the difference perhaps - others don't. Sorry I was pernickety!

[Retailmonkey in reply to PMRpro]

No problem about being pernickety and I should also have been more precise in my language given the audience we are trying to help.

Interesting in your comments about the blood vessels in the temples. The first ones to swell in my case were exactly the ones you describe in the temples and just within my receding hairline. At that point I booked an appointment with the doctor but it was over two weeks ahead. A week later the swelling was spreading and creeping accross my forehead from the area of my temples. Whether this was the veins you refer to or not I don't know but they certainsly swelled significantly and rapidly and four weeks after starting the pred and still there to the touch - interestingly less apparent in the morning than at night. When carrying out the scan they looked at the forehead extensions as well as the temporal ones.

In my guinea pig session four of the doctors being trained were Italian (which I think is where you are based so they are obviously moning down that route - I spent 3 years working between Torino and Asti) as was the doctor who did the original scanning as part of a secondment to Oxford

[PMRpro Ambassador in reply to Retailmonkey]

That's interesting - there are a couple of big rheumy groups in Italy who have done a lot of PMR/GCA research. One of the top people in PMR is from just down the road from me but he works in Austria at present. They are hoping to persuade him to come to South Tirol (Alto Adige) as regional director of rheumatology. Hope he comes...

[cjatthesea in reply to Retailmonkey]

Perhaps a more important question at this time would be about the early tapering. If you've only been on 40 mg Pred. for weeks.....was it enough. Many start at 60 mg. And was it taken for a long enough time. Your vision might be at risk.

Best wishes, CJ

[Retailmonkey in reply to cjatthesea]

The latest guidelines from the British Society for Rheumatology and British Health Professionals in Reheumatology are

Suggested tapering regimen

.

40 60 mg prednisolone (not 0.75 mg/kg) continued

for 4 weeks (until resolution of symptoms and labora-

tory abnormalities).

.

Then dose is reduced by 10 mg every 2 weeks to

20 mg.

.

Then by 2.5 mg every 2 - 4 weeks to 10 mg.

.

Then by 1 mg every 1 - 2 months provided there is no

relapse [46, 47]

You can find the guidelines at rheumatology.org.uk/resourc...

[Retailmonkey in reply to Retailmonkey]

Forgot to say there is a similar guideline for PMR

[cjatthesea in reply to Retailmonkey]

Wow ! I'm impressed ! So...in just over two years, this terrible disease can be gone? I've fought it ( like many others) for almost two years and am back to 60 mg due to a 'controlled Flare'. I hope your GCA behaves better than mine....without an agenda of it's own. Will be interesting to follow.

Best wishes, CJ

[Retailmonkey in reply to cjatthesea]

Two years looks like the ideal but looking at the comments on this forum flares seem to be a real problem and put recovery back. Mine took a year to diagnose so I will be surprised but delighted if the progression only takes two years. Luckily I start from having had a fairly active life (professional sport when young and am still working (75% ) though in my early seventies) until the ;ast 6 months. Response to Pred was almost immediate and so it will be more than interesting to see if the guidelines work ou

[PMRpro Ambassador in reply to Retailmonkey]

It is very much an ideal and an ideal that leaves many patients struggling. Flares are a real problem - and top US experts in the field said some years ago that the primary cause of flares is trying to reduce too far and/or too fast. The Quick and Kirwan paper uses a slower reduction, starting at 60mg and reducing by 10mg every 4 weeks down to 20mg, and find the rate of flares is reduced to 1 in 5 from 3 in 5 when using the type of reduction scheme you have quoted.

A study done in London/Southend a couple of years ago by the acknowledged leader of diagnosis and management of GCA in the UK and another group showed there is still evidence of inflammation in various vasculitides, including GCA, after 6 months at above 20mg despite there being no symptoms or raised blood markers. There are many rheumatologists who realise that reduction is unrealistic and go far more slowly. But the key is actually in the first statement: until resolution of symptoms and blood abnormalities. A month is rarely long enough for that.

[PMRpro Ambassador in reply to cjatthesea]

I do know one person with GCA on the forums who got off pred in 2 years - 4 years on she now has PMR.