How long do you wait to up prednisone with GCA pain

[Plains]

I upped my prednisone from 12 to 15 this morning but the pain in my temple area is getting worse. I just upped it again by 5 mg so I am at 20 now. Should I up it more or just give this amount time to work? I have been having a terrible time with the flares. Just saw the doctor on Monday and he wanted me to go to 10. Should I stay at 20 for a few days then go back to 12?

[DorsetLady PMRGCAuk volunteer]

This link contains usual advice for dealing with a flare -

healthunlocked.com/pmrgcauk...

As you have increased more than the usual recommendation of extra 5mg hopefully it will work quite quickly but you need to be on increased dose for long enough to be sure. So at least 10 days, but 14 is okay without impacting drop back down. Would suggest you go to just above previous dose of 12mg and that obviously wasn’t quite enough.

.. and you do need to inform your doctor in time.

Hope the extra works, but if not, then you need medical advice.

[Plains in reply to DorsetLady]

Thank you. My doctor just retired and I don’t meet my new one until January. I asked what to do in the meantime and they referred me to my GP.

[DorsetLady PMRGCAuk volunteer in reply to Plains]

Okay - well if the increase doesn’t do anything then you need to speak to GP… hopefully it will .. and I suggested how long to stay at 20mg...

[PMRpro Ambassador in reply to Plains]

Very optimistic that!! a) you can't get to see one and b) when you do they don't often have a clue about GCA.

[Plains in reply to PMRpro]

True, that is why I love this group. I don’t feel like I am all alone flying by the seat of my pants! Thank you for all your feedback. It is so appreciative!

[PMRpro Ambassador]

If 20mg is enough to manage the symptoms - stay there until you have spoken to your doctor.

Let's assume this IS GCA, I think you need to get stable at a dose for a month or so before reducing again - and then in very small steps and slower. Your doctor has allowed you to get in a yoyo pattern and that always ends up causing problems. GCA is very prone to flaring up in the first 18 months so it isn't surprising. It is critical to taper in a way that doesn't lead to flares.

If it ISN'T GCA - then your doctor needs to arrange some imaging to identify what it could be.

[Plains in reply to PMRpro]

Thank you, I did speak to him about a pet scan on Monday but he said with being on prednisone it would not show anything. I did have an mri and a cat scan a little over a year ago and they were fine.

[Plains in reply to PMRpro]

How long should I wait to see if 20 mg will have an affect? Hours? A day? Should I go up by 5 mg if not?

[PMRpro Ambassador in reply to Plains]

Give it at least 2 or 3 days, There should be some improvement and if there is, be patient,

[Mewy]

Dear Plains I am sorry that you are having flares while you try to reduce prednisone. First thing, if you have pain around your temples I would be aware that people have PMR can also develop GCA Giant Cell Arteritis. Perhaps you know that but I just felt it was important to mention. As to trying to decrease PRED. Everyone seems to experience the reduction experience differently. I have realized that slow is best. Our PROs suggest if you are still having pain while tapering to go back to the last dose where you had no pain. For my first experience with PNR I ended up using the "dead slow" method. You can read about it on this site just search using these dead slow terms. I have found that different doctors have different approaches. I believe it is because they don't keep up with new guidelines and they have do not understand PMR. I have had to take personal responsibility for my taper using the information I have gleaned from this site. All the best. Mewy who is not A PRO,😊

[Plains in reply to Mewy]

Thank you for your response. I was diagnosed with GCA. I did very well on a slow reduction at one time getting to 1mg of prednisone while on Actemera. I am still on it but I had flares with the GCA. I am now going to reduce slower and when I get to 12 will do a half Mg every two weeks. Once I get to 5 my doctor suggested I just stay there. So that is the plan. So happy all temple pain is gone today. I took 29 yesterday but reduced to 15 today and will stay there for 10 days. All the best!

[PMRpro Ambassador in reply to Plains]

Remember only half of patients were able to get entirely off pred - there are at least 3 different mechanisms creating inflammation in GCA and Actemra only works for one of them. If YOUR GCA involves the others, you will need some pred.