Diagnosis (after a fashion): Well, there we are... - PMRGCAuk

PMRGCAuk

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Diagnosis (after a fashion)

Linda3009 profile image
13 Replies

Well, there we are then. Rheumatologist has decided that I have probable gca.

Probable because of the negative biopsy and blood results.

I'm to begin reasonably slow steroid reduction and start on alendronate

A DEXA scan is on the way too.

Next appointment is in 2 months so fingers crossed that the reducing regimen goes to plan.

Have a feeling I'll be asking for help from you guys for some time yet!

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Linda3009 profile image
Linda3009
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13 Replies
piglette profile image
piglette

Personally I would not take the Alendronic Acid until I had had the results of the Dexascan. If your bone density looks good you may not need it.

Your rheumatologist seems quite positive though.

At least it's a step forward and based in symptoms..hurrah. but not good you have GCA. Questions are always good so ask away!🌻

SheffieldJane profile image
SheffieldJane

Hi Linda3009. Your Dexa Scan results maybe good and therefore you won’t need Alendronic Acid. It is a serious drug. Personally I wouldn’t take it unless I absolutely had to. I would rather take vit D, Calcium and vit K2, eat a healthy diet and do weight bearing exercise.

DorsetLady in particular is going to be a priceless source of information and support with your GCA.

PMRpro profile image
PMRproAmbassador

Just to add my tuppence worth - no AA before the dexascan result ...

Linda3009 profile image
Linda3009 in reply to PMRpro

Thanks for the warning.

I've given this drug to countless patients over the years. Should I feel guilty?😲

PMRpro profile image
PMRproAmbassador in reply to Linda3009

Probably not - depends on the situation and in the early days it wasn't obvious what the long term takeaway would be, Now it is known what AA can do - and some know pred isn't half as bad as painted.

cranberryt profile image
cranberryt

Why does the dr suspect GCA without a positive biopsy? I am new to all this and just wondering as I am having headaches in addition to muscle pain. I see the rheumy Monday for the first time and anticipation they will probably do some testing for GCA.

PMRpro profile image
PMRproAmbassador in reply to cranberryt

Because a biopsy is not 100% conclusive: it is 100% accurate if it is positive for giant cells but when negative it only means they didn't find what they were looking for. There are many reasons for that ranging from GCA not actually affecting that artery even if it is elsewhere, through variations of that including poor surgical or histological technique, to the patient having been on pred beforehand. Then a clinical diagnosis must be made - based on signs and symptoms and response to pred.

cranberryt profile image
cranberryt in reply to PMRpro

Thank you!

Linda3009 profile image
Linda3009

Well my blood results and biopsy were both normal, but that's fairly common in gca.

The diagnosis is based on the clinical symptoms (headache, scalp tenderness, double vision) and the fact that they cleared up within 24 hours of starting prednisolone.

HeronNS profile image
HeronNS

I second those who advise against any bone meds unless absolutely necessary - and "necessary" may be far less likely than you might believe. I personally know two people, and through the forums have heard of others, who reversed their osteoporosis completely through natural means. They, in fact, were my inspiration for going natural myself and successfully improving my t-score.

Linda3009 profile image
Linda3009 in reply to HeronNS

Perhaps now is the time to admit that I started taking alendronate this morning

My background is pharmacy and so I tend toward the pharmacological solution.

I'm aware of the possible pitfalls with alendronic acid, but in 40 years of practice, I've only seen one case of jaw necrosis.

I don't doubt that it happens more frequently, but I guess I can only go with my experience.

This whole thing of being on the patient end of receiving medication has been something of a revelation if I'm honest.........

PMRpro profile image
PMRproAmbassador in reply to Linda3009

That might have something to do with the fact alendronate has only been in widespread use for about 15 years. And that jaw necrosis is rare - the formation of microcracks in the bone which can lead to the more common spontaneous fractures is a new discovery allied with the use of alendronate for more than 5 years.

As a physiologist who has done some pharmacology - I'm far less trusting ;)

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