Fatigue

[sara44]

Diagnosed in October with GCA started on 40 gradually went down to 20 rebounded horrible but what really concerns me is the chronic fatigue and exhaustion but does anybody else experience that and what is it from this is a very devastating disease and now I’m back up to 35 on prednisone which was decreased from 40 to 37.5 and today 35 hoping this will handle the symptoms I am getting very worn over this please any information would be helpful

[DorsetLady PMRGCAuk volunteer]

Hi sara44, and welcome

very common I'm afraid - both the illness and the medication can cause fatigue, so you have to learn to pace yourself -

look at related posts re fatigue or type in pacing in search box and you find previos posts and advice.

have a look at this, I have put a link to pacing issues -

healthunlocked.com/pmrgcauk...

this is a good post to read -

healthunlocked.com/pmrgcauk......

[Horsewhisper]

Hi sara44, sorry to hear about the chronic fatigue and exhaustion - I too was recently diagnosed with GCA about a month ago and I’m experiencing something similar. I also have another autoimmune condition called UCTD, diagnosed 2 years ago, which causes fatigue so I have slowly got used to managing the feelings of tiredness and exhaustion, whilst balancing it with family and work commitments. It’s best not to try and do too much, some days you won’t feel like doing anything, so don’t. Other days you may feel a little brighter so do something that you particularly like and enjoy doing. Treat yourself and dont feel bad about doing so. It is about getting used to the “new normal” for you, which does take a while to adapt to. Just stop when you start feeling tired, I know it’s easier said than done, but that’s the best thing you can do for yourself. There is a really good booklet called “Living with PMR & GCA” which is published by the North East Support Group. It provides superb practical advice and tips about dealing with fatigue and how to live a decent quality of life from people who have GCA. There is lots of useful tapering info on this forum - take a look at the pinned posts. Some very helpful ladies will no doubt be along soon to offer suggestions, regarding tapering. I am not surprised you are feeling worn out, living with a chronic condition can feel very debilitating. There is lots of help here on this forum and lots of people who know how you feel right now. Take care and I hope you start to pick up soon.

[PMRpro Ambassador]

GCA is an autoimmune disorder - almost all autoimmune disorders are accompanied by fatigue, it is part of the illness, The autoimmune part means your immune system is attacking body tissues as if they were invading organisms - in a similar way to what happens in influenza. If you had flu you wouldn't be surprised at feeling as you do would you? This is a bit like flu - but it is ongoing, flu is gone after a few weeks, research has shown that the disease process in GCA is still active after 6 months on high dose steroids (above 20mg) and even after longer on other medication such as tocilizumab.

It is difficult to find much about the ongoing effects of GCA except here. Most autoimmune disease such as rheumatoid arthritis, other forms of inflammatory arthritis, lupus and countless other rare diseases have this aspect - and if you look at relevant sites, such as versusarthritis, they will tell you about it. It is much the same.

You have a serious systemic illness. It is managed with high dose corticosteroids. Both contribute to the fatigue and malaise. The pred will manage some bits - but they also cause fatigue for some people - that or a manic drive that makes them rush around and that makes them tired!

One of the really important parts of living with GCA and PMR is acceptance - acceptance that you have to come to terms with a new normal. One that is likely to be rather different from your old normal. GCA lasts at least 2 years - but for a majority it will be more than that, 4 to 5 years is common. But believe me, I say it all the time, in a year you will look back and see how far you have come. In the meantime you have to be patient. If you learn nothing else, you will learn patience!

[herdysheep in reply to PMRpro]

Sometimes you need evidence for your progress. A simple calendar with dose and space for how you feel can help. If you can manage a diary, all the better, but I didn't manage that!

[PMRpro Ambassador in reply to herdysheep]

No, me neither.

[sara44]

Thank you so helpful in understanding this new disease progress

[Devoid in reply to sara44]

Hi just to say try and rest plenty with each drop, it took me a while to realise how much this helps and prevents yo-yoing up and down with dose

[SnazzyD]

It’s so hard until you yield to it. Acceptance is not giving up. It is very difficult to know whether it is the autoimmune bit or the Pred that makes one feel so tired. I think the Pred was 80% of my trouble because I was pretty normal energy wise until I took Pred for GCA and by day 2 I was floored. By about 30mg it really felt ‘Preddy’ and steroided up; id day it was the lowest point. I was 54 and had to give up work which was a complete shocker, but I finally accepted my life was on hold and a new one would start at the other end, just not the old one. It got better with dose but any sense of normality wasn’t glimpsed for me until about 15mg, more by 10mg and better from then on. I’m now on 0.25mg 3 years later and some days I forget I’ve got anything. My life is different; I am no longer the fast paced, fit, working person I was but life is richer as I start the road to becoming fitter, how fit? I have no idea. Don’t be angry at this, it could have been something a lot worse permanently. It will get better.

[Sho-Sho]

I am so sorry to read about your problems. As the experts have already said this is, unfortunately, one of the side effects of GCA. When I was diagnosed & treated for this, the exhaustion, fatigue and feeling of dizziness was overwhelming, the Rheumatologist in the hospital, who when I asked if this was normal was really vague about it, so I became very concerned that something else was going on. Whereas now, mainly through this wonderful website, talking to fellow sufferers, I found so many others have the same side effects. You just have to try & go along with it, rest as much as possible, for the first year I think my husband took over the cooking completely. Slowly as you reduce the steroids & the inflammation is being controlled, things get better, but be patient & don't rush it. It is such a difficult condition to come to terms with.

If you want any more advice just ask.

[Singr]

Sorry to hear that but comforted to know I am not alone in my sensitivity toward pred reduction and withdrawal. The first to weeks of a reduction resulted in emotional meltdown, profound fatigue and congnitive difficulties, hair loss, yada yada yada. Going uder 10 for me was the worst and I have been up and down between 7 -15 several times now. I expected to have been off them by now but learning more I realise that this is a standard misconception of some medical professionals. Just keep at it though be the journey up and down. The only constant for me has been weight increase.

[sara44 in reply to Singr]

You’re about your dealings with production and prednisone the thing that happened with me is all rebound symptoms but headaches and neck pain the fatigue the general malaise and the actual happened so drastically in so quickly this is my first time trying to get down past 20

[sara44]

Thank you

[Valentina1]

I do so agree with you Snazzy I will be 83 in a couple of weeks time and Live on my own. I get very tired but have myself down to three and a half mgs of Pred I took myself off Methotrexate I am no longer most of the days suffering balance problems or the awful brain fog. I have more energy I sit down when I need to in fact this shielding thing has helped me as I am forced not to try and make it so to speak I have grown to value my silence more often than before. I miss a hug more than anything as I am a rather tactile person. I have become more proficient on the computer.

No Doctor involvement as my blood tests were cancelled havnt had one since December I am following what my body tells me is possible

My hair has begun to improve I am able to walk further but my left eye isn't too good The eyesight is decreasing due to cataracts brought on by the GCA and the diabetes by the prednisolone The condition changed my life.

Yes I was also floored frightened and horrified at the prospect of residential care. I was lucky being a chatty sort word of mouth sort of thing I secured 2 wonderful ladies cleaning for me and a delightful handyman 3 new friends. If push comes to shove I have a suitable house I could offer a share in return for help I have installed another shower as well. Planning I think is a good thing .

Follow your body

Love to all

[Hidden in reply to Valentina1]

It's good to plan to stay home as long as possible and get things in before you need them. Stair lifts or walk in baths, rollators, mobility scooters etc etc. I got a downstairs shower and loo put in a couple of years ago do I can move downstairs if necessary. I am a bit younger than you but have other chronic issues so have learned over the years to prepare, prepare, prepare.

Enjoy the peace and quiet with no pressure to do anything other than pamper yourself and enjoy the silence. I am writing this as my dog, who has developed senile barking syndrome through deafness, is barking away at nothing. Silence is golden. 😉😁

[1Unknown12]

Hi.

If you get the chance I would recommend Kate Gilbert's book Polymyalgia Rheumatica and Giant Cell Arteritis. A survival guide. 2 nd edition. It explains an awful lot, and gives an idea of what to expect / help yourself.

An afternoon rest seems quite beneficial, even if it is only for an hour. That's what I have found but, Everyone is different though.

Best wishes

Andrew

[sara44]

Thank you