Hi I am new here

[sirWinkWink]

Hi I have only just found this site I have put on the blog thing my story, I am finding it quite difficult dealing with my diagnosis and the constant morning pains. I am having daily headaches now but not on the temples as in GCA. Next week I hopefully will get some scan results but I also have to reduce steroids to 35mg so I am hoping that doesn’t make me feel worse 🤷‍♀️

[SnazzyD]

Sorry you’re suffering. It can really quite overwhelming at the beginning of this journey when everything is up in the air. It is good they have done scans not least to rule out other problems. Were you on steroids when you had them?

Can you describe the headaches in more detail? GCA headaches aren’t always just in the temple. Mine were more at the back of the head initially.

40mg is a lot for just PMR and is more as a starting dose for GCA. Were they suspicious of that or larger vessel involvement?

[sirWinkWink in reply to SnazzyD]

Hi the headaches are more nagging in the Center of my forehead, I was on 15mg for a month before I was put on 40mg but they didn’t do anything. They did give me information on GCA but I had an ultrasound on my head and that was normal, I don’t know anything about larger vessel.

[SnazzyD in reply to sirWinkWink]

After 1-2 hours after the Pred, is there any waning at all of the headache? Is the PMR muscle/joint pain any better on 40mg?

The ultrasound of the head only does the temple arteries and you can have issues with the other arteries. If you have any new visual symptoms even if they are intermittent you need A&E.

[sirWinkWink in reply to SnazzyD]

Hi the joint pain more or less goes after about 4 hours of taking the steroids the headache stays it’s not so bad I need to take pain killers just constantly there. I haven’t had any visual symptoms other than once quite early on when I had blurred vision for a few seconds which I have told my consultant about, nothing since, I will make sure if it happens again to go to the hospital.

Thank you for your help xx

[PMRpro Ambassador in reply to sirWinkWink]

Do painkillers help?

[sirWinkWink in reply to PMRpro]

To be fair I haven’t tried xx

[PMRpro Ambassador in reply to sirWinkWink]

I would - because when painkillers help is may suggest it isn't GCA causing it. Not failproof but often helpful.

[sirWinkWink in reply to PMRpro]

Ok thank you I will definitely try xx

[DorsetLady PMRGCAuk volunteer]

Hi and welcome, glad you found us.

Have a look at this introductory post - it's a bit lengthy, but please do read it through and keep it to hand.. it will make more sense as you go along.

Having had GCA myself, my temples weren't the main issue, so that doesn't mean it isn't GCA by any means, GCA can be in any artery in your head ... and if you are still having headaches and other issues, then no reducing. In fact it sounds as if you need more Pred rather than less.

So you do need to go back to consultant and tell them you are still having headaches. You don't actually say how long you have been at 40mg... but obviously not long enough, or it not a high enough dose.

There are stories about GCA in the FAQs -

healthunlocked.com/pmrgcauk....

[sirWinkWink in reply to DorsetLady]

Hi I have been on 40mg for 3 weeks, I have an appointment with a private rheumatologist next week and I should get the MRI results then he has transferred me to NHS and I have an appointment with them the following week and should get results of PET-CT.

My headaches seem to be in the middle of my forehead and are not horribly bad but seem to be a nagging, long and constant.

[DorsetLady PMRGCAuk volunteer in reply to sirWinkWink]

You have arteries there which are branches or sub-branches of the main carotid one’s - so the headaches could be GCA related… and as SnazzyD any sight disturbances then straight to A&E

HA

[PMRpro Ambassador]

Hi and welcome!!

Once you have your results then it will be easier to say something. But if you still have pain at 40mg, it would suggest it is MORE than PMR but it could also be something else. The others have covered what is relevant at the moment.

[Daffodilia]

I started on 40 mg of prednisolone so may be you need more rather than less? I am on 6 mg now after about 6 years.