2 weeks on pred before biopsy

[kalgoorlie]

HiI posted recently that I have suspected GCA. My biopsy (NHS) appointment is not until thursday 22nd feb..... earliest available appt, so I have to wait another week. I will have been on pred for 2 weeks by then. First week at 60mg (GP prescribed), second week at 40mg. rheumatologist reduced dose yesterday ). Obviously then I will have to wait for the result to come through. My question is, if the result is negative and they do not suspect GCA, will I have been on a high dose of pred for too long to allow a quick reduction, or will I have to endure a slow reduction over many months in any case?

Thank you.

[DorsetLady PMRGCAuk volunteer]

As you are aware, you may get a false negative result… which is possible if sample taken shows no signs, but doesn’t always mean you are in the clear.. so based on symptoms your doctors may still think you have GCA and continue treating as such.

If they don’t think you have GCA you can reduce quite quickly - but it will still be weeks rather than days.

[PMRpro Ambassador]

A positive biopsy is incontravertible proof it IS GCA but the biopsy being negative is not proof it is not GCA. All it means is they didn't find the giant cells they were looking for that are the hallmark of GCA. There are a range of reasons that can happen from a dodgy sample, being on high dose pred before the biopsy, the GCA not being in the temporal artery and something called skip lesions within the sample. If it is negative the rheumy will make a decision about dose depending on whether he thought it is GCA.

If they think it definitely isn't GCA you will be able to reduce fairly quickly, down to 10-15 in a week or two but in all, probably over a month altogether.

[kalgoorlie in reply to PMRpro]

Thank you. I was concerned that by being on high pred for nearly 3 weeks would mean I was past the post for a reasonably quick reduction in case adremals were already affected and it would mean it could take ages to reduce. But from what you say a month or a few sounds fine. The GP and rhematologist did say the speed of diagnosis is essential to avoid being on high dose unnecessarily. I do have confidence in the NHS services here in Salisbury where I live and will trust the decision they make.

[PMRpro Ambassador in reply to kalgoorlie]

No, not really. The slow taper is mostly to identify the correct pred dose for YOU, not to get off it. Even so, down to even under 10g you can taper fast and even that last 10mg you will probably get away with 2,5mg steps if it is only a couple of months altogether.

[random901 in reply to kalgoorlie]

Hi, fellow Salisbury person!

[DorsetLady PMRGCAuk volunteer in reply to random901]

Know it well!

[random901 in reply to random901]

Rheum Dept here v good. Excellent communication from both consultants and nurses 👍

[kalgoorlie in reply to random901]

Thank you!

[DorsetLady PMRGCAuk volunteer in reply to kalgoorlie]

Know it well….

[kalgoorlie in reply to DorsetLady]

Good to know! Thank you

[DorsetLady PMRGCAuk volunteer in reply to kalgoorlie]

Salisbury-not the Rheumy dept 😂🤣

[kalgoorlie in reply to DorsetLady]

Ah, OK, yes! Have lived here for 44 years now, previously a Londoner. But my work as an IT consultant has meant traveling all over the place so was rarely at home. Now retired! Love traveling to Oz and NZ! Lived and worked in Sydney for 7 years 10 years ago ... my second home, love both countries. Anyway, since I turned 70, ailments have hit, not eager to slow down yet at all, but needs must. Must be positive. So lucky to have the support of this forum!

[DorsetLady PMRGCAuk volunteer in reply to kalgoorlie]

My daughter & family emigrated to NZ 15years ago -fantastic place, hoping to go back later this year/beginning of next.

Knew Salisbury growing up-and again as a military wife -did 2 years BTEC course at college in my late 30s… long time ago😳

[Cubanurse49]

I had a negative biopsy, due to the time frame, we knew it was going to be Negative, I have GCA and PMR today is my last day on prednisone and have been on Actemra since December .

[Grammy80]

Just last November I went from 1 mg of pred to 60mg. I do have GCA and had been tapering slowly, since 2019, along with Actemra. Another medical problem forced my increase, not a flare. I tapered quickly 60,40,30,20,15,10 then 5...after 5 I decreased 1mg per month. It took from November to January to get to 5mg. I'm at three and will go down to 2 mg in a few weeks with no issues at all. I'll be thinking of you and wish you the best. You have a wonderful attitude and that is the only thing we have control over.💞💞

[kalgoorlie in reply to Grammy80]

Thank you Grammy80 !