Reoccurrence of symptoms

[Phoenix51]

Does anyone know how long after a reduction in Pred dose you may experience a return of GCA symptoms ? I reduced from 15mg to 12.5mg and 10 days after doing so I began to have similar ( but not as painful) headaches in the occipital region which is where my pain was when I first began having problems and was diagnosed with GCA. I am unsure whether this is a return of the initial disease, or just that the higher dose of Pred dealt with the inflammation. Or maybe completely unrelated. I do not have the pain all the time but when I do have it it is very unpleasant and radiates down to the top of my neck, last night I put a bag of frozen peas on the area to get some relief. could it have taken 10 days after the reduction for the symptoms to appear ? I have had two relapses previously at around 12.5/10mg . Unsure whether to contact consultant.

[Jamie751]

I find that lying in semi supine on a carpeted floor covering with a paper back book under my head is very helpful for neck pain ...

[PMRpro Ambassador]

How long is a piece of string?

"I am unsure whether this is a return of the initial disease, or just that the higher dose of Pred dealt with the inflammation."

The disease itself has not gone away - the pred is just managing the inflammation so that it doesn't build up enough to cause symptoms. It isn't a cure, there is no cure. In reducing the dose you are not heading relentlessly to zero, you are looking for the lowest dose that gives the same level of symptom relief as the starting dose. There isn't a sudden obvious switch from enough to not enough - it can take a few days or a few weeks for the inflammation to get to where you feel the effects - that's why we say stay at any new dose for at least a month to be sure it is still enough.

You need around 12.5mg, that is obvious but it isn't exactly that. If it were me I would go back to15mg until it has all settled down again and from here on reduce just 1/2mg at a time. You might only get to 14.5mg but you might get to 13mg and still be fine. And in a few months you might get lower.

[Phoenix51]

Thank you both very much for your replies, much appreciated

[Phoenix51]

Update - have had bloods taken, CRP fine at 5 but PV not back yet. Despite the low CRP, consultant is thinking of upping my Pred dose slightly to see if symptoms go awY but he also talked about adding azathiaprin due to the fact that this is the third time I’ve had a flare/relapse at the lower dose of Pred. He is going more on symptoms. He has booked me in to see him Friday and in the meantime I’ve been having a bit of a read around on steroid sparing agents. I’m just wondering why the consultant is thinking about azathiaprin rather than the others. Any thoughts? I really trust the consultant and value his opinion I’d just like to be prepared and informed before I see him on Friday.

[Peptink]

Hi. Just now saw this post. I’m wondering how the consultant visit went and how you’re doing overall. Did you take the azathiaprin and did it help?