Deniese

[Den73]

Recently diagnosed with Polymyalgia at the age of 73, in August great cell arteritis developed.Was immediately put on prednesone 60mg

Had an appointment on 19 September with rheumatologist and was directed to reduce prednesone from 60mg to 50mg over 16 days and then then by 5mg every 16 days to 30mg eventually.

All great till 10 days into reduction then symptoms of arteritis returned and went back to 60mg as directed by rheumatologist a d start process again.

This I started on Saturday 30 September, my head feels slightly better but still not back to what it was, felt really well no pain from polymyalgia or the arteritis.

Unchartered waters for me and obviously worried about the complication of blindness.

Was directed to this site by a friend who said she found itvery helpful.

Any encouragement and advice would be very welcome.

Thank you in advance.

[piglette]

It sounds like you are in good hands.

[Den73 in reply to piglette]

Thank you piglette, I think so too

[DorsetLady PMRGCAuk volunteer]

Hi and welcome

You need to give the 60mg time to work, hopefully a week or so and it should. what advice have you been given this time around about tapering, and are you seeing the Rheumy again in near future.?

You might like to look at this post - general info for newbies -

healthunlocked.com/pmrgcauk...

..and this is some stores about other members with, or through GCA -

healthunlocked.com/pmrgcauk....

..As for sight, 60mg is high enough to protect - and provided you remain on enough Pred [whatever that may be as time goes on] you should be okay.

As I know, most sight loss occurs prior to diagnose/Pred. Just be mindful but not paranoid about the risk.

[Den73 in reply to DorsetLady]

Thank you DorsetLady fir your assurance.The Rheumy said if I feel symptoms coming back when I start tapering, he dropped to 50mg for 16 days then 45 another 16 days and eventually to 30 mg which will take me to December, but after 10 days the symptoms started coming back quite strong and his advice was to go back to 60mg for 16 days and basically start again, but I was thinking maybe I should only drop 5mg at a time from the start? Till I reach 30mg as the rest of the reduction he has only dropped the 5mg per 16 days. Maybec10mg was too severe?

Thank you for that reassurance with regard to the sight.

I also have Sjorgens syndrome which do make the eyes sore and dry, so enough to confuse someone like myself at the moment who knows very little.

[DorsetLady PMRGCAuk volunteer in reply to Den73]

5mg a time is a much better idea….so go for that.

[Den73 in reply to DorsetLady]

Thank you will do that.

[Steal]

Glad you have found this forum, Den73. Brilliant advice and support given, and also a lot to be learned from the posts and queries of others. Apart from the medical stuff, can I say (I was diagnosed GCA and PMR a couple of years ago when I was 75) that one of the things I have found most difficult is the perceived loss of the person I used to be, both physically (appearance, hair changes, strength etc) and mentally/emotionally - feeling old and incompetent. I am gradually learning to accept the ramifications of the conditions and the side effects of medication. So I just want to say be gentle with yourself, use the forum to be better informed, be patient and take it easy. All love and good wishes.

[Den73 in reply to Steal]

Thank you so much Steal, you sum up so how I am feeling now, just the other day I said I just want to be who I used to be, already, although its new for me, the changes are oh so evident but rightly we need to space ourselves know our limitations and be kind to ourselves on our journey, yours words a great encouragement to me....thank you.Yes I have already found some really good advice on the forum, even as far as the covid vaccine...was really divided on that one but reasoned on the comments that it would be safer as suggested by the consultant, to have both flu and covid.

Had some very kind replies to my post all so appreciated. Thank you all.