Headaches while tapering

[Buchanan16]

Hi you lovely people I'm once again looking for your advice.My mum who as you know is 87 with PMR GCA and has been doing really well tapering by 1/2 mg with no issues as such.

We are now going from 6 to 5 and 1/2 using DL 7 week taper as thought it best as she has been worried about my dad's health past month or so and I didn't want her getting stressed. Anyway all was going well and we are now at end of week 3 but she mentioned to me yest she's been having few headaches over past couple of weeks nothing major and they don't last but I'm now not sure what's best course of action.

My mum never had headaches at her initial diagnosis it was problems with her ear and jaw claudication and finally partial blindness in one eye so this is something new.

She said she doesn't have any tenderness to touch it's just a normal headache which doesn't last. As she's never been prone to headaches throughout her life this is new to her so I'm wondering if I should increase her pred slightly and if so by how much as last thing I want is her having a flare especially as we have done so well up till now.

My mum does tend to stress and worry about things especially over holiday season worrying about silly things like what to get her grown up children and grandchildren for Christmas, what shes going to wear etc. Seems daft I know but she has always been a worrier so I don't want it getting out of hand.

She didn't tell me about headaches initially as she knew I might increase her steroids for bit and our rheumatologist won't be happy when we see her in February as she wanted my mum of pred by time we see her. I've told her that's silly and to let me worry about that as her having good QOL is main thing and to get as low as she has in 20 months is amazing.

Anyway apologies for long post again but your advice on where we should go from here would be most welcome. Do we increase by bit and see if headaches subside and mayb stay there over holidays and then try again or could headaches be related to adrenals? I just don't want to take any chances.

Thanks again for all your support especially DL and PMRPRO you all do an amazing job and I don't know how I'd have gotten through past 20 months without you all.

[DorsetLady PMRGCAuk volunteer]

If the headaches coincided with the start of the latest taper… maybe halt it and go back to 6mg for a couple of weeks and see if that makes a difference.

You probably don’t know, but as mum is not getting them all the time, are they on the days when she takes the lower dose? If so, that probably indicates she isn’t ready for 5.5mg - no a matter what her Rheumy may think - or want!

Personal opinion based on own experience, don’t try and taper just before or during what is likely to be a stressful time - and Christmas however nice it might be, falls into that category.

See how she goes back at 6mg, and I’d be staying there for a while anyway. If it is adrenal related [may be, not sure], they’d probably welcome a bit of time to gently nudge them along.

It may be necessary to increase dose, but give the above a try first… nd if it doesn’t work then come back for further advice.

[Buchanan16 in reply to DorsetLady]

Thanks for this DL I'm not sure if they are on days she's taking 5 1/2 but I've asked her to take note but I think i will put her back up tp 6 for now and wait till after festive season before reducing again.She has also been feeling bit nauseous this past few weeks to and doesn't have much of an appetite and been really tired esp after dinner. We thought nausea might have been related to root treatment she had done but I'm wondering if it could all be her adrenals.

Apart from that she is looking great and inbetween she is absolutely fine. She has managed to take up knitting again and is now on her 12th wee cardigan for my niece baby which is due week before Christmas.

[DorsetLady PMRGCAuk volunteer in reply to Buchanan16]

Would agree nausea, lack of appetite and tiredness is down to adrenals…. and as said, staying at current dose for a prolonged time will help them as well. One of the more enlightened Rheumies keeps his patients at 5mg for a few months just for that reason.

As,PMRpro has said at your mum's age, they will be struggling more than someone younger.

[PMRpro Ambassador]

Honestly - your rheumy needs a reality check. Does she NEED to be forced off pred to a timetable? She is 87 - the production of cortisol by her adrenal glands has been suppressed for 20 months - it could take MONTHS for that to recover, and at 87 it is quite likely it may not. Even people 20 years younger can struggle from here on.

"Fatigue is the most common symptom of secondary adrenal insufficiency, followed by low sex drive and headaches."

healthline.com/health/secon...

Which also says "People with secondary adrenal insufficiency are more likelyTrusted Source to experience low blood sugar than people with primary adrenal insufficiency,"

Low blood sugar can lead to headaches - do the headaches relate to time since food or improve after a meal - or even tea and a biscuit?

It is winter, cold and miserable and probably the most stressful time of year for anyone - and you say yourself that your mum is an Xmas worrier. There are rheumies who say not to try tapering in the winter! Never mind Christmas ... Bah humbug!!!!!!

[Buchanan16 in reply to PMRpro]

Thank you and you are so right about rheumy. I feel my mums doing amazing and I want next stage to be as painless as possible for her and my feelings on it are it will take as long as it takes. Thankfully my gp is happy at moment anyway for me to carry on doing as I see fit.