negative GCA. How to taper

[Scaredofpred]

greetings friends. Negative GCA biopsy today, bloods ok ( cpr slightly raised). Have been taking 50mg pred for 5 days. No advice on tapering! Can I just go back to old dose please? Have checked links!!

[DorsetLady PMRGCAuk volunteer]

You really do need medical input on this - and you should have been given advice. Where did you get results of biopsy? That would be my first port of call…

In theory yes you should be able to drop back down…but you do have raised CRP, so maybe not quite as straightforward as that.

[Scaredofpred in reply to DorsetLady]

Thanks Dorset lady and PMR Pro. It was actually an ultrasound, not biopsy. Nurse seemed positive it was clear! Just reluctant to start at 50 , or stay at that level. May try helpline. Thank you so much for being there!

[PMRpro Ambassador in reply to Scaredofpred]

The same actually applies for the ultrasound - if it isn't affecting that bit of artery, there can be nothing to see, Usually they would tell you to stay at the current dose until the rheumy has seen the report and considered all the evidence they have. I assume you mean the rheumatology helpline? Was it a nurse, a radiographer or a doctor who looked at it?

[PMRpro Ambassador]

A negative biopsy doesn't mean 100% that it isn't GCA - all it means is they didn't find what they were looking for in the small piece of artery they looked at and there is a range of reasons for that. Not least that GCA does not affect all arteries equally and even when it is in the temporal artery it forms skip lesions. A positive is 100% certainty,

You need medical input on whether they want you to lower the pred slowly or stop immediately. They may feel other symptoms still suggest it could be GCA.

[Scaredofpred]

many thanks. Have left a message with consultants Secretary. As always appreciate your help.

[Crusty1949]

I’m with DorsettLady, you and your doctor should work out a sensible tapering plan. After you start following a plan your body will signal when you reach a manageable level. Just remember, flares will happen, at any level. Get in the right mindset so, when it comes you aren’t surprised. The biggest thing is to keep a positive attitude; smile, laugh and look forward to better days. Knowing there will be a few tears. My wife was and still is my support system, helping me through the rough patches. Best of luck, we will keep you in our prayers. Crusty Rusty. 😘❤️😇🙏

[Scaredofpred in reply to Crusty1949]

Bless you too. Thankyou

[Shires123 in reply to Scaredofpred]

I have a similar situation 7 days 40mg for suspected GCA. Rheumatology dept should have phoned Monday. GP rang hospital. They rang me within the hour. Don't think it's GCAI havea tapering plan which seems a little too drastic. Reduce from 40mg to 20for 5 days then 15 for 5 days 10 for 7 days. Then back to 6.5 which I took before symptoms. This seems far too fast. Fingers crossed it works

Definitely speak to doctor before doing anything!

[PMRpro Ambassador in reply to Shires123]

If it isn't GCA then that is fine. In fact, since you have only been on 40mg for 7 days you COULD drop back in a single step to 7mg. Short courses of 40mg are often used for patients with severe chest infections and you just stop at the end of the course. The only difference is your baseline is 7mg not zero.

[Shires123 in reply to PMRpro]

Thank you rheumatologist is sending letter with emergency number in case I have any difficulties which is reassurance

[Scaredofpred in reply to PMRpro]

Joining in again. Had my call from consultant, same as you suggest PMRpro,as I have had just had 7 days on 40 ,I can drop straight back to 8, my starting figure.

[DorsetLady PMRGCAuk volunteer in reply to Shires123]

Why don’t they think it’s GCA? Did you have biopsy?

[Shires123 in reply to DorsetLady]

Both GP and Rheumatologist agree it's not GCA. Bloods all ok ultrasound clear. Physical examination.Increase in pred didn't take pain away. Both think it's either TMJ or dental. I have dental checkup . See what dentist has to say.Have gum infection but the worst pain is in front of ear into jaw .

[DorsetLady PMRGCAuk volunteer in reply to Shires123]

Hope it’s not… bit of info here on TMJ -

nhs.uk/conditions/temporoma...

Did you have prior to your flu jab you posted about a few days ago?

[Shires123 in reply to DorsetLady]

No came on afterwards . Perhaps coincidence

[DorsetLady PMRGCAuk volunteer in reply to Shires123]

Might be - who knows?