arterial arteritis

[blackstone1]

Hi all, I have just joined . I was was diagnosed with pmr 17months ago and am on 7mg of predisolone every 2nd day and managing. However I have recently been experiencing headaches, problems reading and an excelleration of most of the symptoms and I am suspecting arterial arteritis. Appointment with gp tomorrow and I assume tests. Has anyone experienced this?

[blackstone1]

sorry meant to write temporal arteritis

[PMRpro Ambassador]

About 1 in 6 patients with PMR go on to develop symptoms of GCA at some point. Have you ever been seen by a rheumatologist? If your GP agrees with your suspicions he should get you an emergency appointment with one - some hospitals already have rapid access for suspected GCA patients. There aren't really any tests a GP can do - except the ESR and CRP blood tests and they aren't specific.

However - if your PMR symptoms are increasing you will need a higher dose of pred anyway and alternate day therapy isn't really recommended for PMR.

[Jackoh]

Yes I had PMR for just over a year, got down to 10.5 of Pred and then started to experience very bad head pains. I would say my own GP dismissed these as she said alarm bells would ring if it was temporal Arteritis and because the pains were at the back of my head and sides and not affecting my eyes or the temple, GCA was dismissed. I did however have to increase my Pred dose to 21 mg for relief from head pains and then went privately to see a Consultant Rheumatologist who diagnosed cranial GCA. At all times my blood tests , CRP and ESR have been very low. I don't know what tests you feel your GP might give you? Also like PMRpro wonder why you are on a steroid dose every other day? I would say though that your GP needs to refer you to a Consultant Rheumy asap and obviously if eye problems accelerate for you to go direct to A&E.

[blackstone1 in reply to Jackoh]

The streoid dose every other day works on the whole and allows ones own cortisone production to stay going. Homeopath recommended it and gp thought it would not harm.

My headaches are in the temple area and when I read I often have to keep refocusing.

I hate the thought of higher doses of cortisone as I seem to have a low tolerance

[PMRpro Ambassador in reply to blackstone1]

It is a recommended way of using pred. But it doesn't always work for PMR (it did for me at the start though) and is absolutely not recommended for GCA as there is too much time without the antiinflammatory effect.

As Jackoh says - no side effect of pred is worse than losing your sight permanently.

[blackstone1 in reply to PMRpro]

I am not sure that I have GCA but I go to GP tomorrow .I am not sure what he will offer, are blood tests enough to get a diagnosis?

[PMRpro Ambassador in reply to blackstone1]

Diagnosis of GCA is primarily made on the basis of the symptoms and possibly the blood markers ESR and CRP being raised. In about half of patients they can get histological evidence by taking a biopsy of the temporal artery - but while that is 100% confirmation if positive, if it is negative it does not mean you don't have GCA, it means they didn't find what they are looking for. There are several reasons for that.

[Jackoh]

I understand your reluctance to go higher but it is preferable to anything happening to your sight. You can reduce from a higher dose; if anything happened to your sight you can't retrieve that.

[Tj2017]

Black stone,

I have GCA and I can share that within 24 hours from taking my last prednisone dose I can feel the return of the GCA symptoms. Additionally my Rhuemy stressed strongly to take the dose everyday at the same time as the GCA can flare quickly and I could lose my sight. Even on the steroids I am still at a risk for losing some vision.

Please don't put your sight at risk.

TJ

[Margaret1951]

Hi, my GP diagnosed my GCA immediately and phoned the hospital up while I was there and I was up the hospital the next day !!! Straight away also I was put on 60mg prednisoline because of my eye sight.

Hospital also put me on eye drops right away ! Very scary but they all as far as I am concerned saved my eye sight because of emergency action.

Please listen to all of us who have gone through this,

Good luck

[blackstone1]

GP just phoned with the news that my EPR is 28 not very high so it unlikely that I have GCA although waiting fot the other blood tests to come in. In the meantime I am back up yo 7mg per day.

Thank you all for feedback

[PMRpro Ambassador in reply to blackstone1]

What has your ESR been previously?

[blackstone1 in reply to PMRpro]

I am just getting into these numbers so I really don't know except I was told that it was high in Feb. Why do you ask?

[PMRpro Ambassador in reply to blackstone1]

Because about 1 in 5 patients don't develop raised ESR/CRP levels in either PMR or GCA. And others may have had a raised level but it falls when they are on pred (which it should) and in some people it doesn't rise again for some reason.

I am a "no high level" person so it is immaterial for me - but others like not only to know what their levels are but also keep their own records. A diary with test results, symptoms and pred dose can provide a lot of information when you look at it as a whole.

Some have discovered they have been told their blood tests are "fine" or "normal" only to discover when they asked to see them that they were neither and even rising when they were told they were falling! Trust no-one!!!!!!

[blackstone1 in reply to PMRpro]

presumably these fallen levels do not reflect the reality of the pain of PMR?

[PMRpro Ambassador in reply to blackstone1]

Not necessarily - though most doctors think they do/must.

[blackstone1 in reply to PMRpro]

My GP told me that it is unlikely to get GCA if one is on steroids is that true in your experience?

[piglette in reply to blackstone1]

Hi Blackstone, my rheumie said I could not get GCA because I was on steroids, only to discover on reading this board he was wrong!

I always ask for a printout of my blood test results. I have found it is really useful having them over time. The surgery print them out for me if I ask.

[PMRpro Ambassador in reply to blackstone1]

No, the doses used for PMR are much lower than the doses that would protect you from GCA so it is perfectly possible to start with PMR, be put on pred and some time later develop GCA. There are people on the forum whose PMR morphed into GCA months and even years down the line.

There is actually a medical paper warning that having your patient on pred for PMR does not protect them from GCA - after all, if the doses used for PMR were adequate for GCA, they wouldn't start with 40-60mg for GCA would they?

[blackstone1 in reply to PMRpro]

That makes sense. My 3rd blood test is a blood count as I have not heard that mentioned here I wonder if this is an indicator usually?

[piglette in reply to blackstone1]

Hi Blackstone, I tend to have other blood tests every so often in addition to ESR and CRP, such as full blood count, U & E , thyroid, vitamin D, B12 and folates, glucose etc etc. They show if you are in reasonable shape in general and the steroids have not been causing side effects.

[blackstone1 in reply to piglette]

Thank you piglet you are a mine of information

[PMRpro Ambassador in reply to blackstone1]

It's been mentioned a lot in the past. It is less a rule-in as a rule-out. Amongst the causes of the symptoms we call PMR are a few cancers - some of which might show up in a full blood count (red cells, white cells, etc etc). It isn't something that is PMR-specific.

[blackstone1 in reply to PMRpro]

Thank you, that clarifies. Waiting for results is unnerving.

[blackstone1 in reply to PMRpro]

crp resulnts back lab 18.5

is that very high?

[PMRpro Ambassador in reply to blackstone1]

Depends on what their normal range is and you do need to know that since there is a factor of 10 difference in the units. Normal range for CRP is either less than 1 or 1-10

[piglette in reply to blackstone1]

Hi Barnabus, it probably is a bit high, mine has been hanging around at around 12 recently until it suddenly went up to 132! I was gobsmacked, even the NHS doctors went into a higher gear.

[PMRpro Ambassador in reply to piglette]

Was it still high when repeated piglette?

[piglette in reply to PMRpro]

It has dropped to 35, that is on 15mg of pred, having been on 4mg.

[Donuts22]

I too just joined the group! I was diagnosed with PMR 3 years ago, and do have some headache pain. My pain starts in the neck muscles and is felt behind the eyes and in jaws. My Rhumatologist feels this is not GCA but I have not had the tests for GCA. The pain in my neck is usually brought in when sleeping. I cannot seem to get the proper sleeping position for me or the correct pillow.

[Hidden in reply to Donuts22]

Donuts22, if you go to the top of the page there is a green box which says write a post. If you repeat your message in your own thread you will receive some helpful replies. Your post on here will not necessarily be seen by others. My GCA started with not being able to put my head on pillow and jaw pain. Take care.