call from doctor to increase steroids

[Lynlea]

I last saw rheumi in January, was supposed to have appointment in May which did not receive, when I called rheumi secretary had appointment made for August which was cancelled 3 weeks ago.

I received a call last Thursday to say they had a cancellation so I went in and was seen by Junior Doctor who advised me reduce to 4mg then 1mg every 1-2 months looking to be off steroids in December.

I had a gp appointment two weeks ago to discuss reduction as not seen rheumi since January who arranged bloods which I went for yesterday. GP just called me to advise esr 33 and crm 13.7 and increase steroids to 8mg and she will contact rheumatologist department for advice.

Do you think increase to 8mg will be enough?

[DorsetLady PMRGCAuk volunteer]

Well it’s about in line with advise we advise for dealing with a flare-see link -

healthunlocked.com/pmrgcauk...

Be interested to hear what Rheumy Dept say…

[Lynlea in reply to DorsetLady]

Thank you, will let you know what rheumy department say.

[piglette]

My gosh, if my blood results were the same as yours my GP would not even have contacted me and he would have put SATISFACTORY on my notes. How do you feel? Even when my CRP goes over 100 and I feel OK I just carry on with the same dose of pred. I am sure 8mg will be OK.

[Suffererc in reply to piglette]

How familiar 😊

[piglette in reply to Suffererc]

We are all becoming soo cynical!!

[PMRpro Ambassador]

You are on 4 or 5mg? It isn't clear - or I'm being thick!

There is really only one way to find out and that is try - but we say add 5mg to where the flare happened so I suspect that would be to 10mg???? But you would then drop back to the dose you were last good at after 7-10 days or so. How do YOU feel about it? Bit of a waste with that baby rheumy wasn't it ...

[Lynlea in reply to PMRpro]

Sorry for confusion have been on 4mg for one week, definitely a wasted trip to baby rheumy, but to fair was probably going off bloods done in May. Will probably try 8mg and see what advice gp gets from rheumy.

Thanks for your reply.

[PMRpro Ambassador in reply to Lynlea]

That's what I thought - so 8mg might be a bit low. But try it, maybe it will work.

[PMRrunner]

Do you feel you are having a flare? At one point my ESR and CRP were both raised even though I felt ok. Rheumatologist advised to keep reducing as long as I felt ok.

[Lynlea in reply to PMRrunner]

Not sure if it is a flare, have niggly pains in my head and face which come and go. The only time I was not in pain was when I was on 40mg.

I will give 8mg a go and see how I feel and what advice rheumatologist department come back with. Thanks for your reply.

[Viveka]

Interesting to see what rheumy dept says re levels.

I don't like it when they say be off pred by christmas - targets aren't helpful.

On the other hand the thing about niggles is are they getting worse eg more frequent, more inense? That would indicate a flare. A low level of ongoing niggles that come and go happens for some of us. If they are not getting worse then usually it would either be continue to taper with caution or slow the taper down to settle things. That's without bloods increasing, so in your case that needs investigating.

[Lynlea]

Thank you for your response, must admit the niggles were getting worse on 5mg but did explain this to junior doctor at rheumatology, but was still advised to taper 1mg every 1-2 months.

The only reason I went to see my doctor was to see what I should be doing with tapering as not seen rheumy since January and she arranged blood tests.

I wil post again when get a response from rheumatology. My next appointment is to be arranged for 3 months to see specialist nurse to see how I am managing taper, did take 8mg this morning.