GCA & Exhaustion

[Mistyfleur]

Hi I'm new to this forum. My mum was diagnosed a couple weeks ago with GCA. She's terribly ill and her sight has been affected too. She is totally exhausted and can do very little for herself. Just brushing her teeth is a mammoth task. My father & I are caring for her round the clock. She's on 50mg of Prednisilone a day. Is this level of exhaustion normal with GCA? We are seeing the Rheumatologist on monday.

[PMRpro Ambassador]

I'm afraid it often is in the early stages - GCA is a serious systemic autoimmune illness and fatigue is an integral part of most autoimmune diseases. It WILL improve - but it may take a while.

DorsetLady will be along and give you her "Everything about GCA" post

but this may help a bit in the meantime about the exhaustion:

healthunlocked.com/pmrgcauk......

Do come back and ask any other questions that occur to you - someone will always help. I can't speak from personal experience of GCA so won't say any more just now.

[piglette]

Hi Mistyfleur, I am sorry to hear about your Mum. Her illness will cause fatigue, but if she is really ill because of other symptoms too she may be on too low a dose of prednisone. I am glad she is seeing a rheumatologist on Monday, perhaps things can be sorted out for her then.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear about your Mum. The Pred should have got a grip of the inflammation caused, and really she should be feeling a bit better than she is - perhaps the dose is not high enough.

This is what I send to newcomers, so it's written to the patient, but I hope it will help you understand your mother's illness a little better, and enable you/her to control it rather than the other way round. It may also give you a clue as what to ask the Rheumy.

Apologies if I'm repeating what you already know.

It's what I've gleaned from my own (GCA) and others experiences with GCA & PMR over the last 6 years. I have no medical training or expertise, except from a patients point of view.

There's a lot of information to digest, so you may need to read it through a couple of times, save it, print it, whatever, and take your time to read other sites etc. Too much to take in all at once.

PMR or GCA are not like most illnesses -take a course of tablets for a few weeks or months and they're cured. There is no cure as such, but the inflammation caused by the underlying illness can be controlled.

Lots of us are never sure what caused the underlying conditions of GCA and/or PMR (physical or mental stress are favourites though) but having them means that your immune system is not working correctly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessel walls and means that the blood, energy and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiffness, weakened muscles and fatigue.

In PMR the most widely affected blood vessels are those to your main muscle groups - shoulders, hips, knees. In GCA it usually affects the shoulders plus those blood vessels that feed your neck, head, and sometimes the Aorta. If only affecting your head it's sometimes referred to as Temporal Arteritis (TA).Serious sight problems can arise if the ophthalmic artery is affected and stops blood getting to the optic nerve, if that's damaged then partial, or all sight can be lost. If your Aorta is affected it can lead to strokes, aneurysm etc.

The only drug that controls that inflammation is Prednisolone (Corticosteroids), as I said it does not cure the underlying problem of GCA/PMR, but it keeps the resultant inflammation under control. Pred comes in varying dosages, and can be either uncoated (which can be cut if necessary) or coated/enteric (which cannot). Unfortunately it does have some rather nasty side effects - sleeplessness, weight gain, depression, it can also increase the possibility of diabetes or high blood pressure, but not everybody gets all the side effects, and they can all be managed.

Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes less, occasionally a lot longer. You have to tell yourself this is a long term illness, and accept that - it does you little good to say at the beginning I'm going to be off Pred in 3months, 6 months or even a year. That just puts you under pressure, and that's something you don't need!

The initial high dose (PMR: 15-20mg, GCA: 40-80mg) takes control of the inflamed cells, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works for you. It's a balancing act, you obviously don't want to take too much Pred, but you need to ensure you are taking enough..

When you collect your first prescription you should also get a Blue Steroid Card from the pharmacy. Once you've been on Pred for 3 weeks your own adrenal glands stop working, so you mustn't suddenly stop the steroids - anybody in the medical profession should be aware of this. Some people wear a medical ID bracelet just in case of emergencies. Look on line, or surgery may have leaflet.

The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not!

As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have NO return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.

If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg (tablet size). Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg.

Some people have problems reducing from existing dose to a lower one, and that's because your body needs to acclimatise to the new lower dose. So for a few days you may suffer steroid withdrawal (feel generally unwell, irritable etc) but it should go after about 3 or 4 days. One way of stopping any withdrawal symptoms is to taper over a few weeks, rather than an "overnight" drop. Say introducing the lower dose on 2 days during first week (although not consecutive days), maybe 3 days next week, 5 days next week, and then 7 days final week. There are many different plans, quite a few published, or devise your own - whatever suits YOU best. Just ask!

Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am; some people take their Pred around 2am so that by the time it is fully in their system (uncoated about an hour or two; coated about 3-4 hours) it's ready to fight the inflammation.

Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.

There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR in Books. The North East branch of PMRGCA also has lots of info, link from main charity webpage. You can also get information on the treatment suggested from British Society of Rheumatology (BSR) site, or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching the internet will give you plenty of reading.

Look up 'Spoons Theory on web, (Butyoudontlooksick.com) it's not about PMR or GCA but another auto immune disease, and it will give you an insight into how to adjust your lifestyle.

You do have to do your bit as well though, just because you feel better when you start the Pred, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as before (both from GCA/PMR and the Pred) so when you exercise - do gentle - Pilates, yoga, Tai Chi all good - no strenuous workouts or marathons! You need to let your muscle recover, and that now takes longer.

Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.

As I said at the beginning a lot of information to take in, but hopefully you can come back to it as and when you need to.

Please come along with any more questions, or just to talk. There's a lot to learn, but there's lots of people on here willing to help - mainly from UK, but also many from around the world, so you should get a response anytime.

Take care.

[Tj2017]

Hi Mistyfluer,

Exhaustion and chronic fatigue are one of my biggest symptoms. I am currently on 70 mg of prednisone. I just dropped from 80. I was at 50 for a few days, yet I had vision problems so my dose was increased.

I am 54 and am amazed how tired I am. I recently fell asleep leaning on the support beam at the drug store while waiting for mt prescription. My vitamin D was also very low and I did notice a slight increase in energy and mood level after taking the 50,000 unit prescription supplement. You might want to have her vitamin d checked.

Thanks for being a wonderful daughter and interested in supporting your mom through this difficult and extremely painful time. She is very lucky to have your support. This forum is great and here to help.

Best,

TJ

[Sho-Sho]

Yes, exhaustion and fatigue is very much to be expected, I spent the first six weeks after coming out of hospital virtually in bed as I hadn't got the energy to get up and my husband did everything, I have learn't over the last ten months not to fight the fatigue but rest to help your body very slowly recover, and now even on only 16mg I get exhausted and have to take life very gently.

[PMRandRA]

Has your Mum been tested for diabetes? Steroids can cause type 2 diabetes which can make people suffer from exhaustion. If she has not been tested, it might be worthwhile suggesting itvto your Doctor.

xxxxx

[spiritusuk69]

My elderly mother was diagnosed with GCA about 10 weeks ago.

She sleeps a lot during the afternoon now. I wouldn't call it "fatigue" as such but more of an escape from the brain fog, dizziness and lethargy.

The problem with GCA is that once it's been diagnosed then you are likely to be given a cocktail of meds to control the condition and it's side effects and this in itself adds layer upon layer of possible side effects so it becomes difficult to know what is causing what.

What I have learnt so far......

1/ Respect your GP but they are only General Practitioners and are not experts on the condition. My mum didn't have her blood sugar tested and only at my suggestion did the doctor agree to have this tested-her blood sugar is now very high and we will see what happens with this...

Don't be afraid to be pushy with your GP. They are only doing a job but you are caring for your mother so you have a greater motivation to ensure she is being well cared for.

2/ People say that GCA can cause fatigue but so can steroids and alendronic acid (usually given to steroid users) and vitamin D deficiency and vitamin B12 deficiency (often found in elderly GCA patients).

Steroids can cause high blood sugar levels which can also cause tiredness.

Even the process of reducing steroids can cause side effects