Giant cell arteritis

[Buddyk]

I just this minute signed up with healthunlocked. I am looking to talk with someone who has giant cell arteritis....particularly if you are experiencing fatigue.

[SnazzyD]

Hello, you'll get more in depth replies but here's a starter to keep you going. Welcome.

I'm 54 and had GCA diagnosed 13 weeks ago out of the blue (mostly) and started on 40 mg Pred. So I went from more or less normal energy levels to being totally wiped out mainly due to Pred. As the Pred has lowered it has improved quite a bit but is still a big issue. Don't forget too, you have a serious inflammatory condition and DorsetLady will tell you all about that with her welcome post.

So, take it very easy and keep asking questions.

[PMRpro Ambassador]

You'll find no shortage here for either! Especially fatigue - we all have suffered THAT whether GCA or PMR.

This is a link to a post with links to a load of helpful articles about living with it:

healthunlocked.com/pmrgcauk......

[DorsetLady PMRGCAuk volunteer]

Hi Buddyk,

Always do as I'm told!

This is what I send to newcomers, hope it will help you understand your illness a little better, and enable you to control it rather than the other way round.

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.

[Buddyk in reply to DorsetLady]

Thank you for the good information. I should probably tell you a little more where I am at with my journey...which may be a little different than the normal...I don't know. But I went through the Prednisone journey cutting down by 10 mg at a time and have been completely off for almost a year. It went very smoothly. Then I began actemra infusions once a month. And I have NO headaches. I did have a lot of not so nice things like hair falling out, etc. but everything has got better BUT extreme fatigue and a fuzziness in my head. Not constantly but a lot. Have seen my heart dr , vascular dr , primary and nothing helps it. So was wondering if a lot of GCA have this. I only know one other person with arteritis in 15 months and he does not have fatigue. Thanks for the responses.

Buddyk

[PMRandRA]

Just found this. It is not me, but concerns me greatly. In my non professional position, I would refuse those infusions but of course it is your decision:

My rheumatologist is ruling out a few other things with imaging, but if she decides that I do indeed have PMR, she wants to put me on Actemra (tocilizumab). Any experience to share? She likes it because it's not a steroid, and they'll be able to get me off the prednisone. Sounds good, but the side effects!!!! "Actemra changes the way your immune system works...more likely to get infections....some...have died." Stomach tears. Increased risk of cancer, serious allergic reactions, "nervous system problems" (multiple sclerosis!). And those are just the major ones. All of a sudden, prednisone doesn't seem so bad.

[PMRpro Ambassador in reply to PMRandRA]

"All of a sudden, prednisone doesn't seem so bad"

Funny that! I do have to say - I might struggle with the idea of using it immediately for PMR for all sorts of reasons. It is a REALLY heavy duty drug, it has not yet been through clinical trials for PMR although it is approved for and used in RA - but only after DMARDs have failed. It has been through clinical trials for GCA and approved in the US but otherwise is not yet widely used. PMR is a very different animal from GCA - and I'd personally prefer to be part of a heavily monitored trial than have it used off-label - because if anything goes wrong you have no come-back at all.

[Sho-Sho]

Hi - I was diagnosed with GCA ten months ago and started on 60mg of Prednisolone, now on 16mg. Would be delighted to give you any help, I just wish I had been able to talk to a fellow sufferer and be re-assured that all the symptoms and side effects of the condition and drugs were normal, my doctor was great but had no experience of a patient with GCA.

[Sho-Sho]

Should have added that I have experienced massive fatigue and still do.

[camerashy]

Hi Budddyk

absolute lethargy is getting me down more than anything...rest or sleep does not help

I was diagnosed in March and among all the other symptoms I think the fatigue is very hard to come to terms with.

I joined this site a few weeks ago and there are lots of well informed lovely people on...so welcome