I feel dreadful

[Janann25]

I know I sound a bit dramatic but I really do feel dreadful. Following the high Pred doses due to suspected GCA, I’ve reduced according to the doctors instructions to 7mg with the intention of reducing tomorrow to my previous 6mg. But, I’ve been in such pain in my neck, shoulders and arms overnight and this hasn’t eased even though I’m up and moving around. I’ve felt very dizzy and had a headache all during this tapering process but put that down to the high doses and thought it would improve as I reduced - but it hasn’t.

So I’m now having to decide whether to “wait and see” or whether to increase - but by how much? I don’t have a dose I can refer to as a base line. Any advice would be so appreciated.

Jan

[PMRpro Ambassador]

I think you need to speak to your doctor - I would be too concerned it is GCA after all and at the very least a flare in PMR symptoms that isn't being managed by your previous dose.

[Janann25 in reply to PMRpro]

Can’t speak to a doctor today! So I’ve left a message on the rheumatology nurses’ helpline at the hospital and hope they get back to me today.

[PMRpro Ambassador in reply to Janann25]

Er - point out to the receptionist this is an emergency. Even if SHE doesn't think so.

[Janann25 in reply to PMRpro]

Just had phone call from rheumatology nurse. She’s spoken to a doctor and doctor says to take painkillers and to get back to them if problems with vision. She assured me that the method of reducing was absolutely correct and that it shouldn’t cause any problems. She then suggested I rang the Eye Clinic who saw me two weeks ago but Eye Clinic say I need an appointment to speak to someone there! So, I’m keeping a careful eye (excuse pun!!) on my vision and will get to A&E if I’m at all concerned. Thank you - also DorsetLady - for your advice. Jan

[PMRpro Ambassador in reply to Janann25]

They'll be asking us to make an appointment to die next ...

[2013mayo in reply to PMRpro]

Love it, that just about sums up doctors appt.🤣🤣

[DorsetLady PMRGCAuk volunteer]

Agree with PMRpro..,.don’t think you can manage this yourself.

[SnazzyD]

Sounds awful for you. Given that you are in this position due to a medical decision and backtracking on an original diagnosis, you need a medical opinion on how to go forward. I don’t think there’s anything to be gained by mucking about trying to find a sweet spot, guessing whether it’s withdrawal or a flare from underdosing or undiagnosed large vessel involvement. Your first job is to stop feeling apologetic; you are in urgent need of attention.

[Janann25 in reply to SnazzyD]

Thank you. As I have just replied to PMRPro, I’m going to monitor my vision very carefully and, if there’s any change, I’ll be off immediately to A&E.

[jinasc]

I would not be waiting at all. Off to A&E and do not be fobbed off. Eyesight is precious .

[autumnlass in reply to jinasc]

Absolutely right! 😊

[nuigini]

Just read this post and sincerely hope you got the necessary attention yesterday and on the appropriate amount of medication! Wishing you all the best.

[Janann25 in reply to nuigini]

Thank you 🙏. Unfortunately I didn’t get any medical attention but, having spent 5 years dealing with this illness like a DIY project - and with the great help of the knowledgeable people on here - I seem to be coping ok 🤞

[nuigini]

I know how you feel. It's been a DIY project for me for 8+ years, which I've managed on my own with the knowledge and advice from the gurus on this life saving site.