I'm back!

[Hollyhock11]

Hi all. I've been reducing my Pred gradually and am at the 5mg stage for 2 weeks, just started 5mg Saturday after being on 7.5mg for 2 weeks. Well, guess what? I've got the same head ache (tender to touch) and ear and face pain that I had in February, when the doctor suspected GCA and put me on the Pred!!

At the time, I told her I had earache, and popping sound and dizziness when laying down, turning over and getting up, she said my ear was slightly inflamed inside. So now I'll be going back to ask to see an Ear specialist, but I'm cross because I feel I've been misdiagnosed, and have wasted 4 months taking Pred for no reason!

I just wanted to ask if anyone else has experienced a similar thing, and when they got down to 5mg, did the head pains and other symptoms come back? I don't want the doc to just say to go back up with the Pred again, but I'm not sure what is going on??

Sorry for the rant, I'm just fed up with head pain undiagnosed!

[SnazzyD]

Hmm. Well, looking at it logically, if it was an infection the Pred would have suppressed your inflammatory response to it and the raised ESR you’d expect would have been reduced by Pred. You may or may not have felt better or worse if the infection was taking a hold. Did the doc not check your ears at the outset if you said you had ear and face pain?

So, it is possible that the infection has been quietly cooking or it just happens to be a new middle ear infection as a result of being immunosupressed for a few months. If you are getting pain and tenderness behind the ear on the skull then I would ask for it to be properly checked sooner rather than later in case there is some mastoiditis. If you do have GCA after all, I wouldn’t be surprised at a re-emergence of the symptoms because of the rapid reduction of Pred when most people are not at this point for at least a year. However, I’m not sure why you’d have inflammation in your ear, which presumably the doc saw on the other side of the ear drum rather than in the canal. I’d want the infection dealt with, especially if my Pred did go back up.

[SheffieldJane]

Welcome back Hollyhock11! A jump down from 7.5 to 5 mgs would definitely give me symptoms - withdrawal and PMR and possibly some Adrenal Insufficiency it is a tricky stage. I would use dead slow nearly stop and go down by 0.5 a month.

I really hope that you weren’t misdiagnosed. Did you say 4 months! You got down to this level from GCA doses in 4 months.? GCA lasts at least 2 years and you will know all about the danger to your eyesight.

If it is GCA you are dealing with and my assumptions about the time frame of your tapering are correct, then I kind of hope you were misdiagnosed because this is a dangerous way to undertreat a serious systemic disease. Let us know the outcome. It’s not really behaving like GCA is it?

[Hollyhock11 in reply to SheffieldJane]

Hi Jane I don't think it's GCA as the Rheumy said so & wants me to see him in Oct. Been to doc this morning & she is referring me to ENT dept. as she thinks I have BPPV (vertigo) & ear infection!!!??! She hasn't told me to slow down my tapering and implied that the Pred has just masked my ear symptoms for 4 months. I'll let everyone know what happens at hospital. Just want answers as I feel I'm back to square 1 again!!

[SheffieldJane in reply to Hollyhock11]

Yes let us know how you get on. Even wrongly prescribed steroids need gentle tapering. Don’t be bullied. Good luck!

[PMRpro Ambassador]

I think you will need to go more slowly than that for other reasons too - you will have been on high doses for long enough for your adrenal function to have been affected. You still need to taper in smaller steps at this stage to be more comfortable as it returns - if nothing else.