Is this tiredness normal for GCA

[Freeman12]

I have only been diagnosed for a few days but the tiredness is unbelievable. I don't want to do anything, even a little washing up is too much. Does this get better as time goes on. I am on 40mg prednisolone.

[DorsetLady PMRGCAuk volunteer]

Hi Freeman12,

Welcome to the club! Yes tiredness is a factor, it's because your cells that make up your blood vessels are enlarged, hence the name Giant Cell arteritis, so the blood does not flow as it should, so not enough blood, not enough oxygen, not enough energy. Hopefully when the Pred gets to work and reduces the inflammation, then things improve, however don't expect miracles too soon. The large dose of Pred may also give you a boost and make you feel full of energy for a little while.

I've had GCA for 15 months and no two days are the same it seems. Unfortunately, you have to take things easy on bad days, and don't feel guilty you can't help it; but on good days then enjoy what you can. You need to let your friends and family know how you feel, it's a very difficult disease for the sufferer to understand and explain, let alone for their nearest and dearest to comprehend.

This site is brilliant for all those questions you want answered, so keep in touch ..and take care and good luck. Dorset Lady

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Hi Freeman12

I am sorry to tell you that the tiredness does not improve whilst you are on prednisolone. I am on 5mg and yes even the washing up is too much. Whether this is the prednisolone or whether it is the fact that I cannot sleep at night I am not sure. How to cope is to do a little then rest (or fall asleep) then do some more throughout the day. Try and avoid doing big tasks until you have a good day and then rest the following day. Gentle exercise is good, walking short distances (you might find that your legs and feet swell up, another side effect of the steroids). If you get depressed or weepy do not worry that is another side effect of the drugs - come back to the forum here we are here to give each other support. The devil's drugs are horrendous but better those than blindness. I am so sorry that you have been diagnosed with GCA but glad that you have found this support helpline.

[Celtic PMRGCAuk volunteer]

Hello Freeman12

Yes, you will be pleased to hear that the incredible tiredness does improve as you reduce from the high doses. Like you I started on 40mgs for GCA and the fatigue was quite a shock, especially the way it would hit so suddenly and I would have to fall asleep wherever I was - not that I was ever very far away in those early days but I do remember falling asleep whilst dining at a friend's house one evening....even though I hadn't touched a drop of wine! You are on a steep learning curve and one of the best lessons is learning how to pace yourself - difficult at first but easier once you get used to it. One word of caution: when you are having a good day (and yes I promise you will have those) it is best not to go overdoing things like scrubbing the kitchen floor! That's where learning to pace yourself comes in, so never overdo things on a good day or you risk the symptoms coming back on the next. Take care and I hope things improve for you very soon.

[polkadotcom]

Hello Freeman12.

As you can see from the two previous answers, both GCA (and PMR) and steroids do hit you with exhaustion and fatigue. It's a symptom of one and a side-effect of the other, so some folks get a double whammy.

I think it's fair to say that the fatigue does get less as you get the arterial inflammation under control and reduce the dose of Pred. For the majority of us by the time you are down to a 10mg dose most side effects will - or have - diminished. However, it can take some time to reach those lower doses, but don't be tempted to rush the reducing. That will bring its own problems which are best avoided where possible.

Celtic is so right about having to pace yourself on a good day. Overdoing it can bring back all the original symptoms and each time it may be harder to overcome them, meaning that you are yo-yoing the Pred doses (continually putting up the dose and then trying to reduce again) which is definitely NOT recommended.

So slowly and steadily reducing is the key. Listen to your body and do what it wants to do - if it wants to sleep, then so be it, if it wants to take a gentle walk, fine. Learning to listen to it and pacing yourself is the right way to go.

[albatross in reply to polkadotcom]

Hi I have had pmr for 4 and a half years and been on pred. for that time. I was down to 10mg then had a gum infection, antibiotics, tooth out, dry socket infection antibiotics, then another lot of antibiotics because it hadn't cleared. During this time I increased my pred. to 10mg. This week I have gone back down to 8mg and I feel dreadful! not more pain but just feeling awful and I haven't got the energy to do anything. Yes even the washing up is really hard. I just want to lie down and sleep

[polkadotcom in reply to albatross]

That was just too much of a drop, albatross. My maths is hopeless, but the recommended amount is 10% of the whole at any one time and that appears to be double the amount to me. Many patients also find they cannot even drop by the recommended amount on the lower doses, me for one! Like many of us here, once under about 12.5mg, I had to take it in ever smaller amounts till at the end I was dropping by a quarter of a milligram every month. And for me that was only down to 5mg which is my maintenance dose and will be with me forever (unless I have to raise it again - heaven forbid).

You have the choice at the moment of going back up to 10mg again and staying there for a longer time then reducing very slowly, or, as you are pain-free, hanging in there to see if it improves in the next couple of weeks or so.

I do hope you feel better soon, as most of us here know, that awful feeling of being totally drained is almost worse than the pain.

[lynabelle]

I am now nearly a year into this and the tiredness is still there plus the depression, I am starting counselling soon so hopefully that will help me to cope better, the best advise like everyone else says is listen to your body and good luck.

[poppysmam in reply to lynabelle]

Im finding the tiredness worse when reducing, anyone else found this ?

[trish29 in reply to lynabelle]

Hello lynabelle nice to see you back on the Forum I've been wondering on how you were doing as we were in touch before the Forum changed. I hope the counselling works for you and you can cope better . It seems that we have all been struggling which could be down to the warmer weather and the exhaustion doesn't seem to get any easier .. I went to the new Rheumatologist and he was very kind to me and assured me I do have PMR and Osteoarthritis so my medication has been changed this week ..I have managed to get down on pred by 2mg since seeing him a month ago . I'm going slower now as I don't want a flare-up. I had my first 150mg Depomedrone injection this week , strangely I had the injection in my right thigh and it's affected my right arm and shoulder and into the kneck the same pain as PMR but stronger( strange) take care and I hope things improve for you. trish29

[Freeman12]

Thank you all for your wealth of information, The tiredness at the moment is overwhelming as I have M.E/cfs to deal with as well. I am quite an expert on pacing, having had to do this for the best part of 40 years. I don't always get it right though. It was just such a shock to get another tiring illness on top of that one. I am sure I will have more questions but I am so glad I found this forum. Thank you.

[trish29]

Hello freeman12. So sorry to read that you have GCA and that you are feeling unwell.. The tiredness does spoil the day and I'm sorry to say I have had PMR for 9years and still fighting exhaustion .. Let's hope that you have a good medical team and they can help you fight this condition. We all get some good days but we have to learn to not do too much on those days.( I'm still learning) but we have to keep going forward and hope these conditions WILL get better. best wishes trish29

[mickt]

Hi all im a 50 yr old bloke whos a type 1 diabetic,have addisons disease,vitiligo,polyglandular autoimmune failure they call it.Im been treated for lge vessel vasculitis ,with poss gca.Had pmr for bout 4 weeks terrible that pains.Then amouriss fugax tempory sight loss across 3 days.in hosp for 6 days iv methyl pred did the trick no pain and sight saved thank god,im lucky hosps in my area really good.Reduced pred from 70 to 20 in 6 weeks ,but at 20 got really bad vertical double vision,20 times a day.Put back onto 80 straight away down to 40 at moment.Going for my second course of chemotherapy cyclophosphonide and methylpred iv ,to suppress immune system.On this for 3-4 mth then they plan to start me on athazoprine ,,spelt it wrong sorry.Hope it works,been off work for 14 weeks up to now.I walk normally 3-4 mile at a time but with this I do 20 mins and im knackered.Good to hear im not the only one whos suffering with tiredness.Thanx for listening and ill be glad to look on here for advice and guidance.

[Celtic PMRGCAuk volunteer in reply to mickt]

Hello mickt

I'm sorry to hear what a rough few months you've been having but so glad that with prompt treatment your sight has been saved. Following your unfortunate experience in experiencing a flare after reducing from 70 to 20mgs in 6 weeks, you will now be aware of how slowly you need to go with those reductions in the future - reducing in small steps and staying on each dose long enough to ensure the inflammation is stabilised before another drop should prove more successful, especially if you haven't got raised blood test markers to guide you. The tiredness is so difficult to cope with - try not to fight it, but give in to it and have plenty of rest, and hopefully you will start to feel better soon.

[polkadotcom in reply to mickt]

Hi Mick, I'm sorry that you've had all this to put up with but, like Celtic, am glad your sight was saved, wouldn't want anyone to suffer that. You seem to be getting really good treatment for all your ailments including the PMR and GCA, but going to repeat what Celtic has said, slow reductions of Pred are almost always the best way down, not something which can be rushed. I do hope you see some improvements soon.

[mickt in reply to polkadotcom]

My consultant led my pred reduction I would not do it off my own back,told that straight away.Im under the freeman hosp and rvi both Newcastle upon tyne.Been welled screened by both.Had diabetes fo 15 yr addisons for 7.All this vasculitis is a new autoimmune problem.Thks for your advice and hope to get lots more off you all,Do youmanage your jobs

ok .im worried ill not be able to.My work have been supportivde and Im lucky I get full pay for 6 mth half for 6mth.Hopefully get back before all that runs out.Health more important though.