Help me understand Rheumatologist

[Lynlea]

I had a rheumatologist appointment today. I discussed some ongoing symptoms, slight headaches lasts around 15-30 mins. I am currently tapering from beginning of June on 40 mg now on 15mg.

Rheumatologist now wants me to have biopsy due to ongoing symptoms and to add Alondronic Acid to my medication. I did not have biopsy originally due to being on steroids over six weeks and advised would come back negative.

Thanks.

[PMRpro Ambassador]

Have you had a dexascan done to see if you NEED AA? Many of us have perfectly acceptable bone densities and this would be a good point to look since it is said by some that the most loss of bone density happens in the first 3 months on pred.

Was you original diagnosis GCA? Reducing from 40 to 15mg in just over 4 months is pretty fast so if it is flaring I'd lay the blame at his door for a silly-fast reduction! I have to say - not sure why he thinks he'll get a positive now, those are hardly convincing headache symptoms. How does it compare with the start?

[Lynlea in reply to PMRpro]

I started on 40mg on 01/06/2022 reduced to 30mg 3-4 weeks later, 2 weeks later 20 mg, now reducing 2.5mg every 28 days. I will be reducing 19th October to 12.5mg and 10mg in November.

My headache symptoms mild last about 15 mins.

[DorsetLady PMRGCAuk volunteer]

Hi,

Was Rheumy content with your tapering to date -it strikes me as very quick. Was it his plan or GPs ?

Not sure anything will be achieved by having biopsy after being on Pred since June, particularly bearing in mind comments earlier. But it might prove positive - and then you’ll have a definite diagnosis -but it’s a bit of odd way of doing things.Being ultra polite there!

I would hold fire on AA until/unless you’ve had a DEXA scan to prove it’s necessary. Are you on a VitaminD/Calcium supplement -should be prescribed at outset? Many find that enough to protect bones.

Do your headaches following any particular pattern? Same time of day, certain period after meds etc… ?

[piglette]

As the others say get a Dexascan, which your rheumatologist should have recommended. Personally I would want one before touching Alendronic Acid.

[Lynlea]

Hi,

It was rheumatologist tapering plan and still wants down to 10mg by November. I am on vitamin D/calcium supplements.

No particular pattern to headaches but do seem to occur late afternoon early evening.

[DorsetLady PMRGCAuk volunteer in reply to Lynlea]

If you’re taking Pred around breakfast time, then about 8-10 hours later? The fact that they then recede without intervention makes me wonder if they are actually GCA related. Would expect them to get worse as Pred affect wears off, unless you are taking Pred at night of course.

Might be silly question, but have you had an eye test lately?

[Lynlea in reply to DorsetLady]

I do take pred in the morning between 7.00 - 08.00am. My last eye test was three months ago.

[DorsetLady PMRGCAuk volunteer in reply to Lynlea]

So headaches come on approx. 10-12 hours later?

Are you 100% sure there is nothing else that could be triggering them - however tenuous?

Bit flummoxed, don’t sound typically GCA….or certainly not from my experience.

[Lynlea in reply to DorsetLady]

Not sure if I can think of anything else triggering them. I agree with you don’t think they are GCA related but rheumatologist says because I am still having little nightly symptoms better to have biopsy.

[DorsetLady PMRGCAuk volunteer in reply to Lynlea]

Okay, well guess that’s the way to go then. Be interested to hear outcome, as I said if it’s positive at least you’ll know…

[Lynlea in reply to DorsetLady]

Thank you will let you know how I get on.