Confused and distraught

[gtate1914]

I had recently flared at 45mg, or at least what I perceived to be flare, headache, tender scalp, even to lay head on pillow. Went to 65mg which controlled all symptoms, rheumy insisted go back to 45 and devised plan 65-60-55-50-45 over 5 days. Totally distraught and confused, I did. Now day 3 at 45mg again. I can feel in the background the same symptoms just waiting to pop out again. I'm sure anxiety plays a role in what I feel. Tylenol has helped some but not totally. Just so confused. I would have thought tapering from a higher dosage would have been the thing to do. Any comments?

[Hidden]

Hmmm? ... but maybe you needed to be on the higher dose for a longer period of time? When I have flared, and the Rheumy has increased dosage, I've stayed there for like 10 days before starting a slow (like 5mg every 10 days) reduction. If all symptoms come back, I'd let him/her know it didn't work. : (

[SheffieldJane]

I personally, haven’t had to do this and my heart goes out to you. Anxiety plays a massive part in this. There comes a time I expect, when the huge doses do more harm than good and he’s worried about you, it does take some tweaking mamici1 is good on this point - she brings it to life. GCA is a very frightening condition. You are safe now though, they caught it, you won’t lose your sight. 🌼

[DorsetLady PMRGCAuk volunteer]

Would be inclined to think you needed to stay at 65mg maybe a bit longer than you did for starters - you don’t say how many days you were on that.

Secondly the reduction was a tad too fast, you didn’t have time to “know’” what level of Pred you actually need. Obviously 45mg is too low, maybe if you’d had longer at 55mg or 50mg that would have been better. But it’s done now.

Anxiety is probably not helping, but give yourself a few more days at 45mg in case it’s just steroid withdrawal. If you still feel it’s a flare then you need to speak to Rheumy explaining how you feel, and exactly what symptoms are.

[gtate1914 in reply to DorsetLady]

3 days at 65, then rheumy had me go from 65-60-55-50-45. This morning I did take 47.5. I sent her a message this morning via email. I'm sure anxiety plays a part. Would a flare begin so soon?

[DorsetLady PMRGCAuk volunteer]

That’s difficult to predict, it might have been brewing during the five days of reducing from 65 to 45, that always assuming the three days at 65mg actually controlled it initially (in my mind debatable, a week would probably have been better).

As symptoms seem to have arisen so quickly it COULD be withdrawal which is why I suggested giving it another couple of days to see if they go away. I found mine lasted a couple of days, but some find they last longer.

I know Rheumy's worry about us being on high doses for too long, but sometimes their knee jerk reactions result in us actually taking more than we would have if they’d let us do our own thing!

Hopefully you may find 47.5mg is enough - do hope so!

[PMRpro Ambassador]

I think you need another rheumy - one who listens and is realistic.

[gtate1914 in reply to PMRpro]

I asked to be referred to another one over a month ago, my GP didn't want to do that. I think I need to have another talk with him.

[Viola1]

I’ve been following your posts because I have similar questions. I have PMR (Apr 2018)and GCA (June 2018) reducing from 60 and flaring at 45. I increased to 60 due to moderate head symptoms. Then I started having scalp tenderness daily so increased to 65.

Now at 65 for 12 days. Taking Tylenol helps with the minor head symptoms.

My rheumy had me see the ophthalmologist to check eye pressure which she thought might cause the head sx. It’s fine. Next to a neurologist in case the head sx are not PMR/GCA.

I’m not sure how long to stay at 65. The plan was to stay at 60 for 3 weeks then reduce by 10. I’m thinking 2 weeks at 65 then reduce by 5?

[PMRpro Ambassador in reply to Viola1]

I'd certainly try to reduce in smaller rather than bigger steps so your plan sounds better to me. Will you have seen the neurologist by then?

[Viola1 in reply to PMRpro]

No. I see him on Friday.

[PMRpro Ambassador in reply to Viola1]

I wouldn't do anything before seeing him.

[Viola1 in reply to Viola1]

That makes sense, thank you

[gtate1914 in reply to Viola1]

Did you increase to 65 on your own or at rheumy's suggestion? I did on my own and thought to stay there at least 10 days and reduce by 5mg but rheumy had other ideas. I am also being referred to neurologist.

[Viola1 in reply to gtate1914]

I increased on my own and discussed it with my rheumy via email.

[gtate1914 in reply to Viola1]

same here.