GCA

Hi this is my first post ,I have had the usual journey of painkillers and lets ignore it ,it may just go away .Until I thought I was going to end up in wheelchair . I kept on working in pain and exhausted because my doctors made me feel like a hypochondriac . Blood test and predisnole 18 months later and a diagnosis of this lonely illness WOW I felt so relived I burst into tears after the first month of pred . My question though .My sister has GCA and had a terrible stroke last year ,now totally disabled and in a nursing home . Is this a coincidence should I tell my specialist at the Rheumy clinic is it relevant I always feel like a drama queen if I say anything but I do worry this is my future ?

[Celtic PMRGCAuk volunteer]

Hello Jeannie and welcome! I'm sorry to hear about your sister and can understand this is an added worry for you. Having GCA does carry a risk of stroke due to the inflammation in the arteries. Hence the need to get and keep such inflammation under control with the correct dose of Prednisolone.

Are you taking a daily low-dose aspirin? Although, I wasn't prescribed low-dose aspirin during my years on steroids, such treatment is recommended alongside steroids, unless contra-indicated, for those with GCA. 75mg daily is the usual dose, and this helps to prevent such complications as heart attacks and strokes.

[Hidden in reply to Celtic]

No I dont take Low dose aspirin but I will look into it ,I have other health problems Thyriod ect so will make sure its ok ,Thankyou for the information

[PMRpro Ambassador]

It isn't entirely coincidence and is relevant in that there is often a genetic link in autoimmune diseases and GCA and PMR are generally admitted to be related forms of vasculitis - I suspect they are really exactly the same disease but the manifestation simply depends on which arteries are affected and the size of them.

About 1 in 6 patients who have PMR symptoms go on to develop GCA in the form of what is often called temporal arteritis with visual symptoms at some later date. PMR is also one of the symptoms of GCA, again it depends on the site of the inflammation. In some people it "only" appears as PMR symptoms, in others "only" as the commonly held GCA symptoms such as headache, jaw and scalp pain and visual effects and in yet others with bits of both.

SO: don't panic and assume that you will inevitably develop full blown GCA but DO be watchful for any symptoms that COULD be suggesting GCA and go to the doctor promptly. If you develop ANY visual symptoms of any sort don't wait more than a few hours to see a doctor but get someone to take you to the ER, evenings or weekends for example. Don't forget to tell them your full history.

It has been found that the risk of a major cardiovascular incident is 3 times higher in the first year or so after a diagnosis of GCA - i.e. stroke and heart attack. I presume after that the risk is lessened because the inflammation has been reduced by correct use of pred but, nevertheless, the rheumatology guidelines do recommend the use of low dose aspirin which does reduce the risk. Again, though, don't panic and assume it will happen to you but, if there are any signs of stroke, get the emergency services immediately - when someone has a stroke the long term effects can be reduced greatly if the patient can be treated within 4 hours at the most so there is absolutely no time to lose in getting them to hospital. There they are assessed and - providing the stroke is due to a clot and not a bleed - they can then give "clot-busting" medications which dissolve the clot. Time is of the essence because the longer the brain tissues the other side of the clot are without blood the more of the nerve cells die and the worse the effects. If the damage can be minimised recovery is more likely and with good rehab a lot of function can be regained as other parts of the brain learn to do things they weren't supposed to do! Stroke caused by a bleed is a very different thing though.

[Hidden in reply to PMRpro]

Thank you so much for the information

[Whittlesey in reply to PMRpro]

Yes, agree PMRPro. May be a genetic link . My mother was diagnosed at 74 with GCA. I was diagnosed at age 59. Don't know if there are any studies.

[Hidden in reply to PMRpro]

Thankyou