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[BillCapita]

Have GCA . My mother had it and two of my siblings have/had PMR- a genetic link.

The steroids 55 mg to start now down to 40 mg rewiring my brain mainly positive. Not getting enough sleep however. At present a lot of mental discomfort with buzzing at the sides of my head /where I suspect the arteries are.

It is believed that my low iron levels are a result of GCA and I am taking an iron supplement.

I have taken a eye pressure test which was ok. My brother who was on a much lower dosage of steroids for PMR had to have emergency treatment for high eye pressure-54-with 23 being the benchmark

I am 74 yrs and otherwise in good health though with a bothersome enlarged prostate.

Would welcome any comments on the above. What experience do you have?

[DogAgilityObsessed]

Welcome to this wonderful group. But I’m sorry you have GCA and the need for support. There are some wonderful people who are very knowledgable able to help when you need it and I’m sure they will be along soon.

In the meantime I just wanted to reiterate you are not alone. I was diagnosed with GCA at the beginning of December. Also on 40mg.

My temporal artery area is swollen still. But I cannot tell if it’s left over from the TAB or another bit of artery swelling. But my headaches are diminishing considerably. Fortunately I’m not aware of any eye problems but am due to see the optician in the next month or so.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Unfortunately sleep disturbances is par for the course with Pred. Not sure if the buzzing is related to the Pred or the GCA or both.

If you have a look at the FAQs you’ll find plenty of info - and perhaps have a look at this - although via family you seem to know quite a lot about your illness already -

healthunlocked.com/pmrgcauk...

[BillCapita in reply to DorsetLady]

So helpful-thank you. I understand so much more.

[PMRpro Ambassador]

Hi and welcome - feel free to ask any specific questions you have.

[BillCapita in reply to PMRpro]

Have been on Pred for 6 weeks. Now taking 40 mg. My sleep is getting worse only 3.5hrs last night. How common is sleep problem? What strategies do people adopt to help? Eg should I go back to bed after breakfast?

[DorsetLady PMRGCAuk volunteer in reply to BillCapita]

Very common…and plenty of posts about it… have a look at this and the replies of others … and just catnap when you need/can/best suits you -

healthunlocked.com/pmrgcauk...

You’ll see that many do take some medication to help sleep - I did take Nytol occasionally but fortunately soon got back into my normal sleep routine. It is very individual, but it should improve as you get lower on Pred.

[PMRpro Ambassador in reply to BillCapita]

Very - especially at higher doses and in the early days of being on pred, It does tend to improve with time on pred and tapering the dose. Sometimes OTC meds help break the cycle, sometimes not, you need to try to find out. One lady said one form of Nytol did, others didn't, so you may have to try various options, The GP may help - or may not understand.

I don't think going back to bed helps, it may just disrupt your sleep pattern even more - but taking a nap when you feel sleepy might. I, on the other hand, can be falling asleep in front of the computer but when I lie down for a nap, I am miraculously wide awake!