GCA worries

[mo3go7]

The rheumy I saw went over the symptoms of GCA when she officially gave me the diagnosis of PMR this month. I worry about this constantly and would like to know how anyone knew they had this or when to seek a doctor? Also, do you have the chance of having GCA develop forever with PMR? I bought the book by Kate Gilbert and felt more scared after reading. The symptoms I read about I have due to other conditions, so how do you know? I have lots of bad headaches due to allergies & lots of sinus issues for many, many years, I have pain in my jaw because I have TMJ & wear a night guard to keep me from grinding my teeth, I wear contacts to correct my vision, so some of the vision symptoms I could say I have had due to again, allergies or just my contacts. I have had random spells of dizziness/vertigo for many years and had a CT scan early in 2016 to rule out any problems. The results from that said no problems, allergies could cause this as well as stress. I had a flu virus this week and had to miss work one day. My daughter had the flu the day after I had visited her family, so I felt certain I caught this from her. But I honestly worried the whole day what if this GCA now not the flu? I sure can't afford to go to the Emergency Room at our local hospital every time I worry about a symptom as this would cost me thousands of dollars. So how do you know? The 10mg of Prednisone is working well to keep my PMR pain under control and I am able to go about my life as normal. I know from reading lots of these posts I am very lucky in that, but the worry is constantly with me. Any advice? Thanks!

[DorsetLady PMRGCAuk volunteer]

Hi mo3go7,

I think you are getting yourself into a panic when they're probably isn't any need to. You do say you have lots of other health issues which can explain the different aches and pains you are having, and in all probability are more likely to be causing them than GCA.

Your Rheumy was right to outline the possibility of GCA and its problems, but that doesn't mean you are going to get it. The majority of people suffering with PMR, if treated correctly, do not go on to get GCA - it is not a given.

Kate's book is her story of PMR, and is an insight to one person's journey, and I think most people find it educational rather than scary. It's only scary if you don't know what medical condition you've got.

I know you work, and that obviously makes dealing with PMR a lot more difficult, but you must try not to become too stressed, because that's the worst thing in your condition. I hope you have advised your work colleagues of your diagnosis, and impressed upon them, that although you look perfectly healthy you are not! I know you still want to work, and feel you are doing your best to be part of the team, but unfortunately with PMR you cannot function the same as before.

Take care, and stop worrying about things that might not happen!

[mo3go7 in reply to DorsetLady]

Thank you for your reply. I have informed my work colleagues as well as family & close friends, but I think because no one has ever heard of this, & like you said I don't look any different, it hard for anyone to understand or think about. I will try to stop worrying so much and just be aware.

[DorsetLady PMRGCAuk volunteer in reply to mo3go7]

I know it's very difficult for others to understand how we, as sufferers feel, and there is very little knowledge of these illnesses in the wider world. If you told them you had cancer or had broken a leg they would be sympathetic, but because they don't see any difference in you on the outside they just don't get it. That's why this forum is a godsend - you don't need to explain.

As others have said, you have been diagnosed and are being treated so much less likely to develop GCA, but you do need to be aware of any new unexplained pains. But please don't spend all your time worrying, that's such a waste of time and effort. Just get on with life as best you can. Take care.

[Determineddebbie in reply to mo3go7]

I'm a worrier too !! And as someone said before , stress is to be avoided at all costs . I very quickly go into meltdown . Rest and recouperate . I'm learning to this thoughts and tasks down and prioritise . Rest I can't stress enough is so beneficial ... This illness should come with its own chill pill !!! Everyone on here is amazing ... Stick with people who know and understand xx

[piglette]

It is the people who do not know about GCA who are vulnerable. With PMR we have been made aware of it and so can act if we feel we have symptoms. This gives us a real advantage.

[HeronNS]

Because of my own symptoms I was worried about GCA, although my GP never mentioned it! I went to my eye doctor (an ophthalmologist) who gave me a really thorough examination, said there was no sign of GCA, but that I had pred induced increased ocular pressure, which warranted keeping an eye on (no pun intended). He also gave me, during the visit, a great little course on prednisone, tapering, and GCA and impressed upon me, as if I needed it, the importance of attending to GCA symptoms promptly. That appointment was well worth it, just to put my mind at ease. A few months later at my return visit my pred dose was now low enough that even eye pressure was nearly normal again.

[mo3go7 in reply to HeronNS]

I have an appointment with my ophthalmologist this week, just for a annual check up and planned to explain my recent diagnosis. Thanks for your reply.

[PMRpro Ambassador]

Do you not go outside the house because you might get run over by a truck? Of course you go out - and it is the same sort of thing. About 1 in 6 people with PMR may develop GCA - but that is as much because PMR is one of the symptoms of GCA than that PMR progresses to GCA.

You know what your usual symptoms are like - watch out for changes, new different things. People say it is a new sort of headache, like nothing they have ever had before. The flu-ey feeling applies for PMR too. Going to the ER for every symptom would be pointless anyway - every one of them can be due to so many other things.

Remember this forum is based in the UK - when we apparently so lightly say go to the ER/A&E it is because for us here in Europe it is free or only a very small charge. But if you have real signs of GCA, and the visual ones would include loss of vision, whether partial or total and even just fleetingly, then you need to go - it could be a stroke or GCA, you don't know, and ignoring that would be really stupid.

We, and that includes Kate, do feel it is essential to warn about the signs of GCA - and your rheumy was quite right to tell you about it. But it doesn't mean you have to sit there and panic. You say you feel well enough on 10mg pred - so just don't forget the symptoms and be aware, don't ignore them if they arise. Some people do - one lady told us she had lost vision for half an hour while she was on the phone to her daughter and still didn't go to the doctor. I would have been on the phone calling 999/911 in seconds - or telling my daughter to do it for me!

[mo3go7 in reply to PMRpro]

Thank you for your reply. Good advice. Other than this wonderful support group, most people I know have never heard of PMR! I will try to stop worrying so much but it is my nature unfortunately.

[Hidden in reply to mo3go7]

It made me giggle about your remark on worry. I never worry!! Oh yeah right.

I almost ignored my symptoms of GCA because I didn't know anything about anything..

I went to the doctor because my jaw on both sides hurt and ached and my scalp was getting sore spots but the headache is what got me into the doctors.

She didn't mess around and started me on 50 mg.

I am finding the more I learn the less I worry..

Lin