Hopefully a quick question

[yorkieme]

Here I am Friday afternoon and potentially no support/back up until Monday.

Today I started10mg/day Pred' reduced from 15mg.( yes,I'm aware of the 10% rule but clearly my rheumy' isn't and I have had the discussion with her and her final comment was,If I didn't believe this to be correct then I wouldn't do it.)

If I hit the buffer regarding the pain from too severe a reduction what should I do ? I can't ring the help line because it isn't available until Monday.

Should I go back up to 15mg ? Advice would be gratefully received.

Everyone have as nice a week end as possible. xx

[SnazzyD]

If you dropped 5mg only today, you may well get withdrawal symptoms in the next few days and not necessarily flare symptoms, which can take a bit longer to manifest. It can be tricky to discern which is which by all accounts. You probably have until Monday to see anyway. It is so hard when faced with deciding to ‘go rougue’ or do something that you feel is not in your interest.

Wouldn’t it be nice to know if a doc’s proclamations are experience based observation or just belief based on what they want it to be? Sometimes I do wonder. Perhaps their patients are particularly uncomplaining and compliant.

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

“Perhaps their patients are particularly uncomplaining and compliant” .......not like us you mean😳...🤣😂🤣

[SnazzyD in reply to DorsetLady]

Not saying a word...

[DorsetLady PMRGCAuk volunteer in reply to SnazzyD]

LOL! very Loud.

[yorkieme in reply to SnazzyD]

Thanks for the reply.I had to laugh at the reference to going rogue as I did just that a few months ago and boy does she love reminding me about it.lol I got it wrong ! Knowing what I do now I believe the rheumy was correct last time but have a feeling not this time.However I will comply if only to say I bloody well told you so.

Completely agree with your last paragraph. Have a nice week end.

[DorsetLady PMRGCAuk volunteer]

As SnazzyD says - hopefully you shouldn’t have anything too horrendous to cope with before Monday!

But if tonight or tomorrow causes issues (probably Steroid withdrawal) so paracetamol may help...

[yorkieme in reply to DorsetLady]

Thanks for your reply,fingers crossed.

[piglette]

I am really impressed that you have a help line you can contact so often, even if you cannot get them at weekends. I came out of hospital recently and a letter was hand delivered to my surgery. A GP is contacting me next Wednesday, nearly three weeks after they received the urgent letter from the hospital.

[yorkieme in reply to piglette]

Thank you for your reply. I am learning a great deal about this terrible disease of ours from you and other contributors but I have nothing to learn when it comes to being shocked by the stories I read about incompetence etc, of our so called professionals. I started by feeling surprised,how could this wonderful NHS be found so wanting ? that quickly turned to shock ! I happen to believe that I have been very fortunate but so many haven't.

[TheMoaningViolet]

Hi, my reduction was from 15mg to 12.5mg and I found it quite difficult, it took a couple of weeks for the discomfort to subside. I wish you luck as you may be able to cope with your drop. I have always been quite sensitive to a change in dose and this is combined with low threshold for tolerating pain. By the way, my reduction is a fairly standard one.

[yorkieme in reply to TheMoaningViolet]

Thank you for responding. I always believed that I had a pretty good pain threshold, then I met Mr PMR and got a right boot up the pants.lol.

[PMRpro Ambassador]

I certainly would and then ask to go 2.5mg at a time. I do hope she isn't intending doing 5mg at time from 10mg! But when have you to report back to her? If it isn't for a month, 2.5mg every 2 weeks is still 5mg in the month and probably a bit easier on you.

But if I remember rightly you are reducing the pred to zero at the instigation of your rheumy? So the 10% rule is less important until you get to below 8-10mg where you need to slow down a bit for adrenal function to return to normal. Although you have been on very high doses it hasn't been for very long so it shouldn't be too bad,

[yorkieme in reply to PMRpro]

Thank you for your response and sorry for the delay.

I have to stay on 10mg for four weeks,(from today,)by which time she intends having the next stage ready for me to follow depending on the results of the blood tests and observations of the rheumatology team looking after me.

Yes,she intends bringing me off Pred' however my G.P. still insists that I have GCA and during a face to face appointment four days ago,(my first in over six months,) told me I may never come off them.

I refuse to be surprised anymore. lol.

[PMRpro Ambassador in reply to yorkieme]

The GP is over-egging the pudding too - as DL will tell you. But it is good when they are broad-minded enough to show they are not going to panic about low doses of pred. And you do have a fall-back if the rheumy remains obstinate about her opinion.

No - I've given up being surprised too!!!!

[singingloud]

I’ve been asked to go to 10mg by my rheumatologist but only made it once and had to go back to 15mg. The pain was extremely tough. I’m at 12mg and on my way to Mayo.