GCA Relapse?

[Primarose]

I think I have had a relapse or as they call it now a "flair".

As well as the nasty shoulder pains I had really intense head pain on the right side yesterday.

It was reading Sheffieldjane's post in which you said I should maybe increase the preds.

I took 2mgs early evening yesterday and within two hours the shoulder and head pain had gone.

I wasn't aware that GCA caused shoulder and necks pains.

Thank you Sheffieldjane, I wouldn't have thought that the two were connected but something made me read your post again. I would not have taken the extra preds and carried on with the codeine.

[Hidden]

So sorry to hear this Primarose... I have both GCA & PMR and "yes," it's difficult to know what's causing what. Throw in Pred side effects and then withdrawal symptoms and things get really interesting, as I'm sure you know.

I'm happy the 2 extra mg gave you relief. Wishing you well.

[Primarose in reply to Hidden]

Hi mamici1

Yes the preds can really muck you about and as you say you don't know if it's that which is causing problems or another medical condition.

[Christophene47 in reply to Hidden]

Every time I see that photo next to your posts, its sense of fun makes me laugh and lifts my spirits. Except for the gentlemen, she could be all of us.

[Hidden in reply to Christophene47]

Ahhhh, yes.... I loved her, the minute I saw her! She is the essence of ALL of us (all of us with GCA, that is!) I'm so happy you like her and she lifts your spirits!!!!

[SheffieldJane]

I am so glad it worked for you Primarose. Nothing else does, if it’s caused by the disease. X

[SheffieldJane in reply to SheffieldJane]

You need some medical guidance now. I really hope you can access informed medical help.

[Primarose in reply to SheffieldJane]

Thank you Sheffieldjane

I'll ring my doctor tomorrow and if he can't help I'll ring the hospital and hope that they can.

[SheffieldJane in reply to Primarose]

Take it easy as well. No mowing the lawn etc. I hope you continue to feel better. X

[Primarose in reply to SheffieldJane]

Thank you, I've just filled a few sacks with weeds, that will do for today!

[SheffieldJane in reply to Primarose]

What are you like? You should be prostrate on the sofa watching the tennis or something, with your arm on a cushion. So nothing like mowing a lawn then!

[Primarose in reply to SheffieldJane]

That sounds ideal Sheffieldjane. If only the weeds grew in the sofa.

[Primarose in reply to SheffieldJane]

<LOL> I forgot to mention, what grass!!

[DorsetLady PMRGCAuk volunteer]

Hi Primarose

My GCA was all neck and shoulders to start with before going to head.

Just for info (not just you, lots of people, maybe different spelling elsewhere) - but me with pedantic head!

FLARE - a sudden burst of something - usually fire or light, but in our case the illness. Noun

FLAIR - a natural tendency, ability, aptitude. Verb

Sorry, didn’t mean to lecture! 😉🧐

[Primarose in reply to DorsetLady]

Thank you DorsetLady for pointing out my faux pas, I've always called it a relapse but they tend to use the term "Flare" now. Well I certainly didn't have a flair!!

Thinking about it I suppose that GCA can affect any of the arteries.

[SheffieldJane]

So you could have a flair for flaring. 😁

[DorsetLady PMRGCAuk volunteer]

Not recommended!

[Christophene47]

Shoulders and neck are among are prime pain spots for polymyositis which fequently goes hand and hand with GCA. Perhaps PMR is the culprit. The remedy is still the same so upping your steroids was the right thing to do. Do you have pain in your upper arms, morning stiffness for a long time? Hips?

Or maybe it's all that gardening you shoudn't be doing.?!

[Primarose in reply to Christophene47]

No, I don't have any pain in my upper arms, or morning stiffness. I do get some hip pain when vacuuming.

I have been bit obsessive with the old shears and saw lately though.

[PMRpro Ambassador in reply to Primarose]

No wonder you hurt? I only have to lift a heavy bag once and my neck and shoulders shout!

[PMRpro Ambassador in reply to Christophene47]

Polymyositis is a completely different disease: it is polymyalgia rheumatica which goes hand in hand with GCA - they are probably two expressions of the same disease.

It is important to differentiate

ncbi.nlm.nih.gov/pmc/articl...

and the basic difference is that the creatine kinase level is raised due to breakdown of skeletal muscle. that doesn't happen in PMR.

[Primarose in reply to PMRpro]

Thank you for the info, very interesting and one more ailment I didn't know about.

[Stella3]

Hi, I was just going through my Health Unlocked emails and saw your post again. How are you doing now and how much Prednisone are you taking? Have you tried to decrease again? If so to what?

I also have GCA that started with terrible head pain, shoulder, wrists....

That went after I was put on Prednisone 60mg. I went down to 4mg finally (after a year) but have just had to increase to 5mg as my blood test showed inflammation. I am stiff and sore...but nothing as bad as the initial PMR/GCA diagnosis. Terrified of getting those headaches and double vision again.

[Primarose in reply to Stella3]

Hi Stella, how kind of you to post.

I have managed to get down to 2mgs now, I think that when I thought I was having a relapse it was in fact the adrenals kicking in. Bloods tests were "satisfactory".

Same as you I still have a dread of head pains coming on.

I hope to try 1mg soon.

How are you coping with every day activities? I can more or less do what I did before the on-set of GCA.

It's a long slow road isn't it, there we are plodding along in first gear when we want to go rearing into fifth.

Take care now.

[Stella3]

Great you seem to be doing so well. It really gives me hope! I am English but live in the states right now. None of my friends had ever heard of this! But I have met 3 people who have had it. Actually one of them still has it. Just by mentioning it to people and being curious!

Yes it’s a long slow road and disheartening at times but hope springs eternal and I wish you good luck with your journey.

[Primarose in reply to Stella3]

Thank you Stella. Good that you have found actual people suffering from the same as you, I've never met anyone, well I had never even heard of this disease before I had it and neither had a lot of medics.

We shall overcome! Not an easy task but we shall get there in the end.

May I wish you well in your journey to recovery or should that be remission. Whatever, may you be pain free.

Take care.