GCA feeling exhausted

[Rosina1871]

I have pmr and then a few weeks ago developed pain around the left side of my face, jaw ache, tender scalp and my doc put me on 40mg pred whilst waiting to see rheumatologist. Hospital ophthalmologist could find no sign of GCA in eyes. Crp and esr very high. Now been on 50mg since monday. Symptoms eased but feel exhausted all the time, spaced out and feel as if I’ve been drinking. No motivation. Thought I may feel better than this with high dose. Speaking to rheumatologist again in a few weeks. Said to drop to 45mg if no symptoms in two weeks. Is it the norm to feel this fatigued. Thanks

[DorsetLady PMRGCAuk volunteer]

You probably need to give more body more time to adjust to the increase in dose.....it certainly is a shock to the system.

Just be pleased no issues with eyes, and that symptoms are reducing, that shows the increase is working...and yes it is normal to feel spaced out, fatigued etc...but it will pass.

[Rosina1871 in reply to DorsetLady]

Thank you. Makes me feel more optimistic

[jinasc]

Yes it is normal, just rest and listen to your body and do as little as possible. Don't bother dusting etc, just treat yourself like a Precious Princess (as another suffered used to say).

I see you were diagnosed with PMR Jan 2019 and wonder what dose of pred you were on when you developed GCA.

As you already have PMR it is no wonder you feel fatigued. Fatigue is the one thing that all of us seem to suffer with an auto-immune illness. I often wonder if our bodies are trying to work hard to get us into remission.

GCA is different to PMR and although they are related and whilst you probably started on 15mg-20mg you are now on double that dose and beginning a steep learning curve.

The good news is you have said 'the symptoms have eased'. Be careful in two weeks time and make sure that you no symptoms re- appear when you drop to 45mg.

I am so sorry you are now having to deal with PMRs big sister..........she is a problem you did not want to have. So now go and make your favorite drink and sit in your favorite seat and look out of the window.

[Rosina1871 in reply to jinasc]

Thank you for your kind reply. Welling up again now. This happens all the time since being on high pred x

[jinasc in reply to Rosina1871]

I was quite a maniac on 60mg.............laughing, crying, angry etc 😭😭😄😊😢😠...........and tears are such a relief , so have yourself a good howl nothing wrong with that and what is more, it does you good.

[SheffieldJane]

I am afraid it is. You have a serious systemic, autoimmune disease and a drug that also leads to significant fatigue. The trick is to learn to pace your activities punctuated by rest, whilst the Prednisalone does its work on the inflammation. You will feel better when you can taper your dose down ( by not more than 10% at a time).

[Rosina1871 in reply to SheffieldJane]

Thank you. It threw me when the rheumatologist said I should be feeling a bit better but perhaps she was just referring to symptoms

[DorsetLady PMRGCAuk volunteer in reply to Rosina1871]

She probably was...and they sometimes assume a miraculous recovery!

[alvertta in reply to Rosina1871]

Symptoms mean more than blood results.

[PMRpro Ambassador in reply to Rosina1871]

They do seem to have this belief that taking pred means you will suddenly feel wonderful and back to normal. We spend a lot of time trying to disillusion them of this idea and explaining to patients who feel they have failed in some way! And they seem to think pred cures a lot of things that it doesn't ...

[Rosina1871 in reply to PMRpro]

Appreciate that comment. Wish the rheumatologist had mentioned how unwell I would feel and how the pred could affect me. Perhaps I should have asked. With her saying I should feel better, made me worry something else was wrong. Noticed my heart rate has increased with pred, but still well within normal range

[SnazzyD in reply to Rosina1871]

And in that I think many get frightened and think they are having an abnormal reaction. I have no idea why they don’t prepare people.

[Rosina1871 in reply to SnazzyD]

Exactly

[PMRpro Ambassador in reply to SnazzyD]

Because if the truth were told - they don't actually know. They have patients telling them the downsides but they don't know how to explain to the patients how to make it less bad and just decide pred is evil and they should get off it because of all those awful side effects. It came as a revelation to Prof Mackie that diet could help various aspects - the French tell the patients to cut carbs but they don't sell it well and patients struggle to give up their baguettes!

[SnazzyD in reply to PMRpro]

Yes, like I said before, the doc who on noticing I hadn’t put on weight after three months queried whether I was absorbing it properly and therefore my GCA might not be controlled. I pointed to my balloon face. I did say I’d been on a very low carb diet and while he didn’t poo poo it, he didn’t give me anything positive either 🤷🏻‍♀️

[PMRpro Ambassador in reply to SnazzyD]

It didn't occur to him that the fact your SYMPTOMS were controlled was significant? After all - how else do they check it is enough? And that IS the point of the tapering/titration process.

[SnazzyD in reply to PMRpro]

He did ask if I was feeling ok and when I said I’d had a miraculous improvement of symptom he hovered on the edge of saying it might not be GCA because of his doubts I was absorbing. This is when I pointed to my face and the fact that the Pred took a mere 2 hours to kick in; cause and effect right there. I think some of this was driven from the recurrent thought throughout in all the 5 Rheumy dept docs I saw in 48 hours that I was too young at 54 but the guidelines said otherwise. I kept hearing, “you’re very young, but I suppose...” delivered with an anxious frown. It’s interesting how old news sticks. Thankfully the young GP and the young A&E clinician did not let this cloud their diagnosis. At least though, they did go with the guidelines and didn’t override like so many seem to try to do.

[PMRpro Ambassador in reply to SnazzyD]

The apparent lack of clinical skills does worry me at times! It is the patient they need to treat - not a textbook from umpteen years ago. The lack of awareness of newer opinions is really a problem and I have spoken to several experts in PMR who develop this light dawning expression when I explain the balance of corticosteroid risks and symptom relief AND they admit they have lots of patients still on pred after years and years though usually at a lowish dose. So why don't they write about it?

[Jan_Noack in reply to SnazzyD]

lol, those very young docs probably thought 54 was old about like 70 anyways

[SnazzyD in reply to Rosina1871]

I don’t think they have the foggiest idea of how you feel but to be fair how would you go about telling anyone exactly how you feel, it is such a whirlwind of weird stuff.

[PMRpro Ambassador]

GCA is a severe systemic illness, and the autoimmune disorder is still active, the pred only reduces the inflammation it creates. It's a bit like having long lasting flu and the pred on top can also cause some of the effects you metion.

It will improve, for the moment, be a poorly person!

[powerwalk]

Just sending good wishes. I hate those symptoms you describe, spaced out, etc., you dont know where you are. I hope things settle quickly for you.

[Rosina1871 in reply to powerwalk]

Thank you. Appreciated

[Kafkaontheshore]

Sorry to hear your news. Yes fatigue is a big problem in GCA, it was for me. I had five months off work as I could do hardly anything at its worse. Slowly improving now but due to start Tocilizumab next week as unable to get steroid dose down. Hang on in there you’ll get through but not quickly I’m afraid 😀 👍

[Rosina1871 in reply to Kafkaontheshore]

Thank you

[alvertta in reply to Rosina1871]

I am on 14 prednisone plus actemra weekly (GCA) and still very fatigued all the time. So, As someone above said. You are The Princess. Rest. Feet up. Tea. Good book. “Darling. Bring me my slippers please “. Hope you feel better next week.

[Rosina1871 in reply to alvertta]

Thank you

[Sho-Sho]

When I first had GCA & was on 60mg of pred, I felt exactly the same as you are describing - I certainly didn’t feel buzzy & lively on that level of pred. It’s a double whammy with the autoimmune illness causing severe fatigue & the steroid which made me feel acutely dizzy & spaced out. If you can, rest as much as possible, don’t fight it, & as Dorset Lady says, in time it will pass.

[Rosina1871 in reply to Sho-Sho]

Thank you. It’s such a relief to hear you had the same symptoms. I’m certainly not buzzing! Going to take things steady and go with the flow. Thanks again

[196_]

It is quite normal to feel shattered with G CA. I often have a nap during the day and fall asleep on the sofa!

[Rosina1871 in reply to 196_]

Thank you

[Narducci]

Hi Rosina, Yes, unfortunately it is a side effect of having PMR or GCA.Both my sister and I have it and it does cause fatigue, but you will learn to

manage it. If you are lucky, the symptoms may lessen after a few years of treatment,

so try and be positive.

Best wishes