Re Possible GCA symptoms

[Carrot1]

If one is taking a dose of 30mg Pred, will that have any effect on GCA symptoms? I have had a headache in my left temple for the last couple of days - on and off to start with then pretty constant today. Rheumatologist upped dose of Pred to 30mg last week as I have been feeling quite unwell and I have been wondering if it could dampen down the symptoms and stop/slow down any developments.

[cjatthesea]

I was diagnosed 28 months ago with GCA and PMR. Started on 60 mg pred. Have been up and down many times. Never lower than 18 and only for a very short time. Many flares and other symptoms and side effects. I hate being on pred ( currently at 35 ) would not feel safe in your situation. Don't want to send you into a panic but GCA is serious. A more normal dosage would be 40-80 mg.

Hope this helps. It's just my opinion but I believe others will tell you the same.

God bless, CJ

[PMRpro Ambassador]

30mg is very much the bottom end of the range for managing GCA so if it is active enough the symptoms could still break through but the local rheumy here where I live is of the opinion that for the majority of early GCA cases it would be enough. The high doses are used when the patient is already showing visual symptoms.

Seems a strange idea to increase pred just because you were feeling unwell - did your rheumy express an opinion that he thought you might be developing GCA?

[Carrot1 in reply to PMRpro]

No not as such. My original diagnosis was pmr with possible mild gca. She increased dose because I was still in pain and very fatigued etc and also we are going on holiday (!) in a few days. It's only supposed to be a short term increase - in fact I have already been instructed to reduce gradually over the next few weeks. I'm a bit worried about going away now these headaches have surfaced - excellent timing as usual! We are insured but I really want to go and claiming back from insurance companies can be such a pain. If the Pred is enough to control the major symptoms that might be okay.

[PMRpro Ambassador in reply to Carrot1]

Hum - oh dear.

"Possible mild GCA" - it didn't occur to her that maybe, just maybe, this was not necessarily "possible mild GCA" but the early stages of GCA?

I'd be a bit reticent about going certain places with possible GCA - where are you going?

And if it DID really get going, you may find the holiday not very pleasant for any of you. One lady was given permission to go on her Spanish holiday a couple of weeks after diagnosis - and spent the entire time in bed in her hotel room.

I know I'm a misery guts - but I'd rather defer the pleasure and be sure I was gaining a pleasure later.

[DorsetLady PMRGCAuk volunteer]

Hi Carrot1,

Sorry to hear you are feeling unwell again/still!

What exactly do you mean by unwell? If it's not really PMR or GCA symptoms then extra Pred is not necessarily going to work.

What is Rheumy doing to get a proper diagnosis of GCA? Or was upping Pred just a knee jerk reaction? Have you had blood markers tested recently? Sorry to ask so many questions, but I know you have a history of other illnesses, which probably isn't helping diagnosis.

Think you need to either see GP, or speak to Rheumy Dept to get some answers about your headaches in particular.

As others have said, 30mg is not really enough if it is GCA, but on the other hand you don't want to be taking more and maybe masking another problem.

Please keep us informed.

[Carrot1]

Rheumatologist is talking about doing various tests - she says its "not right" that I'm not feeling better. I think it is pmr symptoms myself - the headache is new in the last few days. Yes have recently had markers tested. They are normal and always have been. I think you're right with the knee jerk reaction, mainly because of our approaching holiday which is confusing the issue a bit. I guess I'm a bit worried about having GCA symptoms in the middle of the North Sea - however, there is a doctor on board so maybe I'm worrying unnecessarily.

[PMRpro Ambassador in reply to Carrot1]

Being on pred doesn't automatically make you feel better - it relieves the pain and stiffness that the underlying cause of the PMR creates by its inflammatory action. It has no effect at all on the actual disease. That systemic action continues although it does seen to fade a bit with time and so most of us DO feel better.

It has just occurred to me - maybe she is naive enough to believe her patients who reply to "How are you today?" with "Fine..." out of politeness or habit!

Make sure you have a supply of pred with you - as I bet few ship's doctors carry enough pred to give someone 50mg/day for a week!

Is that just a North Sea crossing or a North Sea cruise?

[Carrot1]

It's a cruise to the Norwegian fjords for 8 days. I've been to the doc this morning. She has spoken to the rheumy who says 30mg should be enough even if it is GCA and I am to continue on that dose until we come back. I can then contact her. I shall see how today goes and then make a decision. I have quite a lot of Pred tablets in stock fortunately. Thank you and DL for your comments.

[PMRpro Ambassador in reply to Carrot1]

Have fun - it is one of the few cruises I would like to do. We did a cruise on the west coast of Canada - loved the sights, hated the cruise apart from dinner when we had fantastic tablemates!

If you develop any visual symptoms at all, 30mg will not be enough so make sure you have plenty of pred with you.

[Carrot1 in reply to PMRpro]

Thank you. I will take a good supply. Am looking forward to watching the world go by!

[Hidden]

I started with PMR 15 mgs prednisone then 2 months later got the crushing headache along with jaw pain was so painful to chew and scalp tenderness with an open sore. Was put up to 50 mgs prednisone.

Dr had me tapering quick and ended up at 7 mgs huge flair back to 20 mgs. Now at 15 going to 14.

Do take an extra stash of medicine.

I took a trip at 20 mgs n did just fine until a hurricane almost delayed our trip home. I was in a panic as I had only brought enough for trip n not any delays. That won't happen again.

[PMRpro Ambassador in reply to Hidden]

Yes - basic rule: however long you are intending being away - take enough for at least double that!!!

If you are travelling with someone - give them half in case your suitcase gets post and carry yours in your hand luggage...