GCA blues

[LizzieGuinn]

Hello all!

I am fairly new here, though I have been an avid reader since I was diagnosed with GCA in mid-November 2016. Started on 40mg pred, now down to 10 mg and about to start the really slow taper down.

Although I didn't initially have visual disturbance, the steroids have affected my eyesight so an eye test two weeks ago showed quite a change since my last test in the summer. New glasses required for driving (not that I like driving very much these days) and this wasn't something I was warned about.

I initially took AA for 6 weeks as directed by my GP, but after a visit to my dentist who expressed surprise that I had been prescribed it and reading the comments on this site about it I stopped. My GP refused me a Dexascan but my rheumatologist referred me for one. However, the results weren't very good, showing me to be osteopoenic (perhaps to be expected, as despite a healthy diet and previously active lifestyle I am very slight, 5 foot 2 and under 8 stone). The GP has now prescribed Risedronate, but this seems to be another bisphosphonate and especially after Wednesdays news I am very reluctant to take this. Any advice would be most welcome. How to improve bone density? I do Pilates regularly so balance and coordination is good.

I have an appointment with audiologist and ENT on Monday to look at the ear pressure problems that were my initial symptom, and which haven't lessened with the steroids. I am sleeping slightly better with a lower steroid dose, but still feel totally oppressed by this awful illness - tetchy with my husband, trying to live a fairly normal life looking after 2year old granddaughter one day and 96 year old mother the next, but often wiped out on 'free' days. Not good at pacing!

Sorry this has turned into a rant, but it is nice to be able to let off steam, especially when everyone tells me how well I'm looking - it's the bloody steroids, I say!

Is anyone else going to the Bristol roadshow? I'm going up on the train from Dorchester so it would be nice to make contact with anyone I've been hearing from on this site. Thank you all for your wisdom and reassurance!

[PMRpro Ambassador]

What was your t-score? Osteopeneic is a likely comment for us at our age - but that is the range from -1 to -2.5 so it covers a LOT! Mine in -1.5 in spine and -1.0 in hip - still counts as osteopenia but no-one here has suggested medication.

I won't say what I think about your GP - but it rhymes with cat...

HeronNS is our resident "How to improve bone density naturally" so I'll leave that to her when Canada wakes up!

[LizzieGuinn in reply to PMRpro]

It was -2 in hip and -1.5 in spine, and yes, I am 68 so maybe that's not so disastrous for my age! I've never broken a bone, and find Pilates really good for balance to avoid falls, so maybe I should relax about bones! I am taking one iCal-D3 1000mg a day.

And I don't want to be overly harsh on my GP as he did spot the GCA symptoms pretty promptly....though perhaps that's me trying to spot the best in people!

I look forward to HeronNS's advice in due course. Onward and upward...

[PMRpro Ambassador in reply to LizzieGuinn]

One point - you would be better to break the calcium tablet and take 1/2 twice a day - the body is quite unwilling to absorb more than about 5-600 mg at a time. Quite why they do such large dose supplements is a mystery to me!

That must be a very old photo - no way do you look more than mid-50s there! Where was it taken? Outside your home - or is it Wisley?

[LizzieGuinn in reply to PMRpro]

Thank you so much PMpro for this suggestion. Will do this from today. And you are very complimentary - the photo was actually taken last September just before I became unwell, and it's at Gidleigh Park Hotel in Devon, where I worked as a chambermaid in 1966 after my A levels, but went for a wedding anniversary overnight treat. I look much less well today 😒 though the dormouse cheeks deceive the casual observer into saying I look well!

[SheffieldJane]

Thank you for your useful post. It is full of helpful detail for those of us who are expecting GCA to show up. I am interested in the ear pressure symptom. I've not mentioned my ear symptoms to my GP because of the embarrassing list of symptoms I have ( long).

You seem to be doing really really well. Are you taking Adcal - Calcium and vit. D? That's all I do for my bone density.

Wishing you a speedy recovery, you seem to be doing all the right things.

[LizzieGuinn in reply to SheffieldJane]

Yes SheffieldJane - I do take iCal-D3 once a day.

The ear problems are really annoying especially as one of my weekly pleasures is singing in a community choir. I can't be sure whether my hearing is actually affected by the increased pressure, which incidentally disappears at night when I'm lying down and occasionally clears in the daytime when it feels as if the fog has lifted!

Thank you so much for your encouraging words.

[PMRpro Ambassador in reply to SheffieldJane]

Did you not see the stuff last year about the survey being done about ear problems in PMR and GCA? It was realised at one of the NE group meetings that a high proportion of the GCA patients there had ear or balance problems - much to the surprise of the rheumatologists who were talking about GCA. So they funded a survey and its evaluation.

[LizzieGuinn in reply to PMRpro]

Yes I did see it, but the survey had already closed by the time I was diagnosed. Have they published anything yet? My (private) audiologist had never even heard of GCA - it will be interesting to see if the NHS audiologist I'm seeing on Monday is any more clued up!

[PMRpro Ambassador in reply to LizzieGuinn]

Don't think it is published - but the evaluation was well under way last I heard.

It is amazing who DON'T know about it. I have seen it mentioned in several medical articles/papers - in my book if I know, so should doctors. I might excuse an audiologist not knowing but really they should. Poor blood flow in that area doesn't just upset the optic nerve and vision - ears and auditory nerves are close by.

[DorsetLady PMRGCAuk volunteer]

Hi Lizzie,

Welcome!

There is one lady from Weymouth going to the Bristol roadshow, think her and hubby are staying around the area for a few days, she may respond to this.

FYI there is a meeting of the Christchurch group on Friday 17th March at Haskins GC at Longham if you feel like driving that far - contact is lady called Deirdre at [e-mail], all very welcome including friends/spouses.

I live not far from you. So if you don't want to drive to Longham could meet up somewhere for coffee and chat. Just send me a message.

[Zebedee44]

Hello all, can someone please lint me in the direction of information about the Bristol event. Thiis the first I had heard about it. It's a long way from West Wales but all information and contact with other people is helpful.

Also, can somebody please expand on the hearing issue, because I suffer with a sort of pressure deafness most mornings and had not connected it with my PMR?

Many thanks in anticipation of helpful responses.

Chrissie, aka Zebedee

[PMRpro Ambassador in reply to Zebedee44]

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