Fatigue from GCA or PRED?

[montebello]

Hi again,

I'll ask one of those questions that are probably impossible to answer, but at least I might hear of some of your experiences. I just got back from my ophthalmologist (who presently knows more about GCA than my GP, and I'm still awaiting to see a rheumy) -- and he suggested that I increase my PRED dosage from 40 MG to 50 MG and hold it there for a month to see what happens. He said this in response to my ever-increasing fatigue, supposing that it's the GCA that's causing the fatigue and not the PRED. I started at 60 MG for 2 weeks, then went to 50 MG for another 2 weeks, and now I'm at 40.

So here's my question: how can one discern where the fatigue is coming from, i.e., from the GCA itself or from the PRED??? Honestly, if it were coming from the GCA I'd have thought my fatigue would have been most severe BEFORE starting the PRED treatment. But it's only gotten worse since the PRED treatment. So why would I want to increase the dosage if the fatigue is the major issue?

Thanks for your patience as I (and so many others) struggle with this disease.

[PMRpro Ambassador]

If the current dose is managing the GCA symptoms other than fatigue then you shouldn't increase it. The fatigue is most likely part of the underlying autoimmune cause of the inflammation - but that isn't affected in any way by the pred, it is merely a management strategy to control the inflammation created by that a/i disorder, it hasn't cured anything.

Pred itself can cause fatigue - while at the same time giving you the feeling of having wings and the belief you can do anything and everything, Which means you do far too much for someone with a serious systemic illness and get even more fatigued. It is all about knowing your limits and pacing

I'm sure this has been pointed out before, I think DL has it as part of her welcome posts but for reinforcement:

healthunlocked.com/pmrgcauk......

It isn't just theory - it is essential

[montebello in reply to PMRpro]

Thanks for these links. Trust me, i devour all this info and take it all to heart. It's frustrating, however, when the physicians in my life are telling me things that are flat out opposite to what im hearing here. "Raise your prednusone intake if you feel fatigued," "no restrictions at all on the level of exercise you're used to," etc. I've learned through my PMR experience that you folks here are the ones i need to listen to, and i am. But when they ask me "why didn't yoy increase your PRED like i suggested," and i tell them "i frequent a UK forum on yhis subject and am learning a lot through them," it's a hard pill for them to swallow at least initially. Bottom line is that i have to take control of this myself and not mindlessly just do what other people tell me to do. Frustrating day today, but tomorrow will be better. Thanks for all you do.

[DorsetLady PMRGCAuk volunteer]

As PMRpro says part chronic a/i disease and part Pred, please read, and re-read and put into practice her link, which as she has already said is included in my intro post…..

….I know there’s a lot to take in early days, but if you follow advice given you will make your life a little easier.

[montebello in reply to DorsetLady]

where is this introductory post? Can't seem to find it anywhere. Thanks so much

[DorsetLady PMRGCAuk volunteer in reply to montebello]

here-save it or look in FAQs-

healthunlocked.com/pmrgcauk...

[montebello in reply to DorsetLady]

so grateful. Thanks

[SheffieldJane]

It comes from both . I think Pred keeps the body on high alert which eventually wears you out in my experience and of course all autoimmune diseases have fatigue symptoms. I manage it with strict after lunch naps.

[Grammy80]

It is true that the best guidelines are here! I was so lost in the beginning and desperate for information. I found the fatigue...and still do...is one of the most frustrating elements. 😑 I started treating myself to an afternoon nap which helped. The art comes in when we listen to our bodies. It is a big adjustment for sure., but you will make it!!💕

[diana1998 in reply to Grammy80]

I go to bed every afternoon at 4pm and sleep like a log or sometimes just doze. Then I get up refreshed to enjoy the evening. 👍👍 When I started on pred I couldn't keep my eyes open after 2.30.

[PMRpro Ambassador in reply to diana1998]

I wish! I can barely keep my eyes open - I get up and by the time I am lying on the bed I am wide awake and, worst of all, have a washing machine brain!!!!

[readingbooks in reply to PMRpro]

I love that , a washing machine brain . Very accurate, darn it !

[Sharitone]

I think the others have already said what needs to be said. It is very frustrating, particularly when others on the forum bemoan not being able to walk more than 5 miles a day any more, and you can hardly walk 5 metres. But in the end, if you've done all the sensible things, all you can do is just go with it. You cannot sort out what is causing each part of the fatigue, particularly as it varies. I also went up to 60mg at one point Spring 2021, and fondly imagined that when I got to 10mg everything would start to feel better - didn't happen, so no point in building up hopes centred on any random goal. I just tell myself that every decrease in pred is a step forward, even if it doesn't feel like it

But it is helpful to know that other people are having the same experience, so that is why I am replying to you.

Btw, I can't imagine what planet your ophthalmologist is on!

[montebello in reply to Sharitone]

greatly appreciate your comments that's for sure.... what a time this is.... gees...