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[Nap1]

What are the chances of having PMRGCA and not getting other forms of vasculitis? I have been reading the vasculitis website and it's pretty scary. I am winding down at 11.5 and the last time I tried this I went from 12.5 to 10. Blood markers increased. So I am doing this a little slower. I have had GCA for about a year and a half and wonder if I should be looking for an aneurysm. Also had PMR for three years and that went into remission. I was off prednisones for about 10 months before the GCA. I guess The question is what are the chances of just having TA and it not going any further or morphing into another form of vasculitis? Thank you. And should I be checking for an aneurysm? Thank you again.

[SheffieldJane]

Not sure but reading about it put the wind up me too. It doesn't seem to point to a likelihood of acquiring another type but the symptoms are easy to imagine. We are on the alert in our age group for odd symptoms though and should be reporting any. I am sorry for your difficult sounding journey. I hope this coming year is a good positive one for you.

[Celtic PMRGCAuk volunteer]

Hello Nap1, although it wasn't suggested during my years on steroids for both PMR and GCA, my Rheumy recommended 1-2 year chest and abdominal X-Rays during a later appointment to rule out aneurism and I have since had two, thankfully with negative results. These will continue indefinitely.

On the vasculitis front, I wouldn't worry worry til worry worries you, as the saying goes! It sounds as though you are doing well so please stay positive and hopefully your GCA will go the same way as did your PMR.

[PMRpro Ambassador]

... and NOT getting another type of vasculitis?" Pretty high! So stop worrying! And using the Vasculitis website for bedtime reading does tend to be a bit depressing I agree - though I have been known to suggest people who think PMR is the end of the world should have a look - if you have to have an autoimmune vasculitis, PMR is the one to choose!

There is no real suggestion that PMR/GCA morph into other forms of vasculitis - what sometimes happens is that patients who are originally diagnosed with PMR have their diagnosis changed but that is more often because it never was PMR in the first place but an arthritis presenting with polymyalgic symptoms, as opposed to a vasculitis.

As Celtic says, we should be monitored for aneurysm but I suspect that the vast majority of patients aren't! If the aorta was involved - and it isn't always - then it is thought the risk is a few years down the line. In 2015 a very large study was published that came to the conclusion GCA patients are at twice the risk of developing an aneurysm as the healthy population - but as important as the GCA are the other risk factors such as smoking. The title is "The relative risk of aortic aneurysm in patients with giant cell arteritis compared with the general population of the UK." Robson et al (including Dasgupta, with 7000 subjects) and this is an extract:

"Results

Comparing the GCA cohort with the non-GCA cohort, using a multivariable model with adjustment for BMI, smoking, alcohol, hyperlipidaemia, lipid lowering medication, hypertension, anti-hypertensives, diabetes, cardiovascular disease, cerebrovascular disease and peripheral vascular disease; the subhazard ratio for aortic aneurysm (95% CI) was 1.92 (1.52 to 2.41). Significant predictors of aortic aneurysm were as follows:being an ex-smoker 2.64 (2.03 to 3.43), current smoker 3.37 (2.61 to 4.37), previous prescription of anti-hypertensives 1.57 (1.23 to 2.01), previous history of diabetes 0.32 (0.19 to 0.56) and previous history of cardiovascular disease 1.98 (1.50 to 2.63). In a multivariable model of the GCA cohort alone, male gender 2.10 (1.38 to 3.19), smoking 3.79 (2.20 to 6.53), and diabetes 0.19 (0.05 to 0.77) were significant predictors of aortic aneurysm.

Conclusions

This study demonstrates a two-fold increased risk of aortic aneurysm in patients with GCA. Other risk factors for aortic aneurysm, including male gender, age, and smoking, are important in patients with GCA and the general population. The message for clinicians and policymakers is therefore that the diagnosis of GCA should be considered within the context of the range of risk factors for aortic aneurysm, rather than acting as a prompt for a specific screening programme. This study also demonstrates for the first time the protective effect of diabetes in the development of aortic aneurysms in patients with GCA."

Now why diabetes would be protective is anyone's guess - but being female and not smoking also help!

If you are worried about the abdominal aortic aneurysm part you can request to be added to the UK national screening programme which is basically for men over 65 but anyone at increased risk, including women, may ask to be screened. The thoracic aortic aneurysm risk is a bit more complex - asking your GP to send you for a chest x-ray every couple of years is the easy basic approach.

You are probably at risk of other cardiovascular disease - in particular peripheral vascular disease - but that is something for reporting appropriate symptoms to your GP and not taking any attempt to dismiss concerns. The use of pred to reduce the inflammation does reduce the long term risks somewhat though - bluffing it out without pred has downsides too.

[Doralouise77 in reply to PMRpro]

Thanks for this, do you have a reference for the article?...would like to read more.

Cheers

[PMRpro Ambassador in reply to Doralouise77]

If you copy and paste the title into your browser you will get a load of links. Most of them are to the abstract - the article itself is (as usual) behind a paywall. However, the second link I get is to a doc file - which you get as a download and then you can read it. I can't give you a direct link or reference - it won't let me have one that works.

[Nap1]

Thank you for your prompt response and yes it makes for a very bad reading at midnight. I have been meaning to ask that question anyway it's been on my mind.

On another topic FYI. I will be interviewed by a group doing a study for Bristol-Myers Squibb. They are starting phase 3. The drug company is looking at a drug presently used for RA. I might get to be part of those trials if I choose. If you recall I was offered TCZ and turned it down because of the possible side effects which equal or supersede Prednisone.

I will have the x-rays for possible aneurysm. I will also keep you informed with regard to this drug and the trial. I have no other information at this time. Again thank you for responses. Marilyn USA.

[PMRpro Ambassador in reply to Nap1]

Is it the abatacept one? Will be interesting to see how it gets on in Phase 3 if so.

[Nap1 in reply to PMRpro]

I really have no idea which drug it is yet. Will let you know when I know.

[nancyannehanson in reply to Nap1]

Please send me anything you can concerning this trial with Bristol Myers Squib very intetested.

[Nap1 in reply to nancyannehanson]

I have no information at this time