muzzy head and creepy feeling

[Rose1bud]

Reduced from 4mg to 3.5 now into my 4th week am now getting a muzzy head and a creepy feeling has anybody else had these symptoms no pains

[SheffieldJane]

Yes. Well described. I think it’s the fluey feelings that people mention. Perhaps pause a little at this relatively harmless but effective dose and see if this symptom abates before going down again. Sometimes it can become pain but not always. Well done on your fine taper. I bet even our club zero folks have their off days.

[Rose1bud in reply to SheffieldJane]

Thank you for your kind comments It is year ago today that I was diagnosed with GCA

[DorsetLady PMRGCAuk volunteer in reply to Rose1bud]

In that case you’ve got to a low dose very quickly, so time to ease up methinks!

[Rose1bud]

Thank u DL but I have been reducing by .5 mg for the last three months with no side effects the muzzy head is a nightmare comes and goes thank u again

[Hidden in reply to Rose1bud]

Surely the muzzy head and creeping feeling could be GCA too? I only have one but I am sure that has been described as a symptom on overviews I have read online.

[PMRpro Ambassador]

Probably due to your body still having to catch up with cortisol production.

[maria40]

When you talk about a creepy feeling do you mean a shivery, tingly almost electric shock feeling? I have GCA and I get this when I am trying to reduce at around the 8mg level, though you are obviously well below this.

[Sho-Sho in reply to maria40]

Maria -How long have you had GCA - I am now at 8mg, took 4 weeks to drop half a mg, have stayed at 8 for the last two weeks and still really struggling, I think it is just the steroid drop that my body is hating. How do you feel and what level are you on now?

[maria40 in reply to Sho-Sho]

I've had GCA about seven years now and PMR for eleven years. I'm at 9.5 now but I'm finding it very difficult to get below 8 having had to go back up to 10mg when I reached that level. I have been as low as 5mg but that was before GCA.

[Sho-Sho in reply to maria40]

Gosh, you have had a tough few years - I am lucky that I have not had polymyalgia as well. Thanks for your reply.

[maria40 in reply to Sho-Sho]

Sorry, brain malfunction ; should have said eighteen years of PMR with GCA starting eleven years in.

[Sho-Sho]

I have GCA and also have this tingly funny feeling, am now at 8mg, it feels as though something is being pumped through my blood - I think it has to do with the steroid taperering even though I am doing the Dead Slow Drop method by half a ml.

[Rose1bud in reply to Sho-Sho]

When were u diagnosed and did u start on 60 mg I was diagnosed with GCA a year ago today don’t have a any other symptoms apart from feeling tired

[Sho-Sho]

Diagnosed in August 2016 and started on 60mg - have had great difficulty in tapering right from the start! Don't know why as I have never had a flare, just think my body has hated it and makes me feel very unwell. My Rheumatologist expects I will take another year before I am off steroids - she is a great believer in tapering very slowly. But some people find it much easier and also the inflammation burns out quicker in some people than others.

Good luck it's a nasty condition.

[Gran6]

It will be two years in September when I. had my biopsy and it was positive for GCA and was on 60 mgs steriods have been reducing very slowly and had got down to 5mgs ,saw my rheumy last week and my ESR had gone up from 8 to 38 so he has upped my dose to 7mgs for a month and then reduced again slowly ,to be honest I had been having slight headaches but nothing to what I had two years ago.Had my adrenal gland test and all ok to carry on reducing,seeing him again in October and hopefully I should be on 3mgs. He did say aches and pains may happen as I reduce further.