Friends Probable GCA

[ValFF53]

Hello Everyone

Thank you so much for the advice and support you have given me.

My friend is definitely improving. She had the Temporal Biopsy taken last Thursday after almost three weeks on steroids. Should it have been done sooner in case the steroids will have affected the result?

She is having real problems with sleeping (about three hours per night). She saw her GP yesterday who has prescribed sleeping tablets which she does not want to take for fear of addiction.

She mentioned having a DEXA scan at my suggestion and her GP said she doesn’t have any obvious osteoporosis so refused to order one. She mentioned having back pain and he said stop taking the Aledronic Acid.

She is concerned that he will expect her to return to work quite soon. What have others with GCA experienced about returning to work? I can only assume that whilst she is taking high doses of steroids that she will not be fit to work, particularly in a job that requires sitting at a computer for various 11 hour shifts (including nights) and is at least an hours drive from her home.

I would be grateful for any advice I can give to her.

Kind regards

Valerie

[DorsetLady PMRGCAuk volunteer]

Hi Val,

Yes the fact of being on steroids for 3 weeks may well affect the TAB, but it seems that many are in the same boat. It may well come back as negative, but unfortunately that doesn’t mean that she doesn’t have GCA, just means that particular part of the artery sampled doesn’t show it.

Sleeplessness is a problem on high doses, but would she be willing to try the tablets say every 3rd or 4th night just to ensure she gets a good night’s sleep every so often, but doesn’t become addicted. I did that with Nytol (advised by GP - but can be purchased OTC so maybe not quite as strong as prescribed ones).

Shouldn’t worry about not taking AA,(always under discussion in here - pros/cons) so long as she takes VitD/ calcium supplement- was that prescribed?

As for return to work- very difficult particularly if she’s going to be stressed about it. Most of us on here are retired, but there are a few who return to work, but many find it too much. If she does feel forced to return by GP then she needs to get advice from her HR team, and maybe union, if she belongs to one.

[ValFF53 in reply to DorsetLady]

Thank you so much for your prompt reply. I will pass on your advice.

[Soraya_PMR]

A GP with x-ray vision. How wonderful!

What does ‘obvious osteoporosis’ look like I wonder?

From the guidelines....

Individuals with high fracture risk, e.g. aged ⩾65 years or prior fragility fracture

Bisphosphonate with calcium and vitamin D supplementation

DEXA not required

Other individuals

Calcium and vitamin D supplementation when starting steroid therapy.

DEXA scan recommended

A bone-sparing agent may be indicated if T-score is −1.5 or lower.

academic.oup.com/rheumatolo...

[PMRpro Ambassador in reply to Soraya_PMR]

Quite - the self-assessment of their diagnostic capabilities by some doctors never ceases to astound me! I'd say the typical "obvious osteoporosis" patient would be a pretty frail little bunny - in a very advanced stage.

[Soraya_PMR in reply to PMRpro]

Like our grandmothers or great grandmothers, stooped, frail, fragile. From a time when prevention or management was a dream of the future.

Sometimes (often) I wonder about research, what’s the point if the evidence is not implemented? Much like new laws, pointless if you can’t police the existing ones.

[ValFF53 in reply to Soraya_PMR]

You are very right.

[ValFF53 in reply to PMRpro]

Love your sense of humour!!!

[SheffieldJane]

The sleep difficulties I experienced with Prednisalone were solved by 10 mgs of Amitriptylin taken I hour before bedtime.

The doctor’s response about the DEXA scan was quite bizarre. One requests the scan to see if Alendronic Acid is worth taking. Clearly it was a “ just in case” prescription of a rather horrible drug.

Work is going to be a real struggle. When the time comes, a consultation with a health and safety rep. Or equivalent would be necessary. An ergonomic assessment of her work station and her job design to facilitate her return. They do have a legal obligation towards her, a duty of care.

You are right about steroids impacting on the biopsy result. The diagnosis is done mainly on clinical assessment.

I hope this helps a bit.

[ValFF53 in reply to SheffieldJane]

Thank you for your reply.

She has already had a long struggle to get suitable equipment for her arthritis.

She has said that her Occupational Health Dept will be in contact with her in due course. She is concerned they will be more on the workforce side than hers. She may have to contact her Union as she did on a previous occasion.

She is only 54 and is a single parent with a mortgage so her job and income is important.

[PMRpro Ambassador in reply to ValFF53]

I would say get the union involved asap. My friend was terrified of telling her employers and Occy health but they were actually pretty good once she fessed up.

[PMRpro Ambassador]

SJ knows a lot more about the work aspect than I do - but it also depends a great deal on the type of job and degree of decision-making required. Pred doesn't influence that well at all. But I understand that patients on pred should be excused night shifts - I was told that by someone who worked for Customs & Excise and had strange shifts. She was moved to an indoors desk job when she was able to work.

I hope her rheumy has had a good look at her pre-TAB. Three weeks of high dose pred is a lot pre-TAB but a good surgeon and pathologist will see the left-overs. You'll just have to wait and see.

[ValFF53 in reply to PMRpro]

Thank you for your reply. What a coincidence that my friend also worked for Customs and Exise and had to be moved from Customs at Dover docks to an office job because the exhaust fumes were causing asthma. She now works for the Home Office/Immigration (not sure which).

[PMRpro Ambassador in reply to ValFF53]

i wonder if they know one another!!!

[SheffieldJane in reply to ValFF53]

If your friend works for the Civil Service I would expect them to be an exemplary employer that goes over and above the legal requirements. That was always our aim, I worked for the Dept. Of Education in HR. We were supposed to show the private sector how it should be done. If your manager is not clued up then problems can arise. I would get the Union on side from the outset.

If we are talking about the same friend that is.

[PMRpro Ambassador in reply to SheffieldJane]

Hmm - you would also think that of the NHS. They are AWFUL.

[ValFF53 in reply to PMRpro]

I have worked for the NHS for over 40 years and I couldn’t agree more!!