I was diagnosed with GCA (Temporal Arteritis) in Nov 2016. [ESR = 86]. Started on 40mg Pred for a month; then gradually started to taper - down to 20 - then flare ~ 3 weeks ago. Back up to 30mg, then 25, now 20. Too fast? Not sure how effective it is. When I have a headache, could it be my chronic sinusitis, or the GCA? Supposed to go down to 17.5 next week. Apprehensive either way.
Trouble is, I never really feel well. The GCA may be under control, but the side effects from the Prednisolone are dire, so that I don't really feel that much better, just different. So what is 'normal' going to be?
Within 3 days of starting Pred, my blood sugars sky-rocketed (no diabetes before) and I've been on very high doses of anti-diabetes meds ever since. Very difficult transition period, with blood sugar levels rocketing up and down - and all the consequences of that. Managed to get this under some degree of control, but every change in Pred dosage leads to turmoil again. Had to get used to an extremely low-carbohydrate diet, which has not been easy.
Tend to feel sick quite a lot, and no energy most of the time. Muscle weakness - feeling unsteady, weak and wobbly - has become permanent, and seriously affects everything I try to do. Can't seem to exercise when feel so ill = vicious circle? Terrible sweats - increasing by the day.
Try my best not to feel sorry for myself, but it's hard. And I'm all the time uncertain what to do for the best.
Have found other people's experiences helpful, but nobody else seems to have mentioned Pred effects on blood sugar. Is there anyone else who can identify with this? Would be grateful for any helpful comments.
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BonnyQuine
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I cannot comment on blood sugar levels, mine have been ok so far. I have had GCA for 3 1/2 years and started on 60mg steroids. Your reduction seems very drastic to me it seems that you may not have the inflammation under control by reducing by such large amounts over a short period of time. It took me nearly 2 years to get to 20mg with flares along the way, although I am now on 5mg and have been for 3 months. All the other symptoms you mention are the same as I have suffered. I find that if I have a headache I take paracetamol and if it goes I know it is not the GCA. Pain killers will not touch GCA.
I find, as you do, that the GCA journey is a very difficult and lonely condition (there are so few of us with it even on this forum) to deal with and sometimes I wonder if I have GCA or is it another condition that is making me feel weak, exhausted etc therefore feeling very muddled. One way that I monitor myself is to have regular ESR and CRP blood tests, although these cannot be relied on entirely in my experience they do indicate whether I should increase my steroids or not.
To end all I can say is that the reduction of steroids over the time that I have had GCA has resulted in the side effects lessening and at the moment I feel relatively "normal", although I do forget what that was like!!! Best wishes to you, things do get better over time.
Unfortunately in some people Pred does lead to pre-diabetes, and even diabetes as you have discovered. I have some experience of diabetes, but only as a spouse, not a sufferer, but there are a few on here who have it, and hopefully will come along with advice and reassurance.
I would agree probably too fast reducing, from my own experience with GCA, I only reduced in 5mg steps, once a month provided no symptoms and bloods okay - from 60mg down to 25mg. From then in 2.5mg steps down to 15mg, even smaller after that.
Quite agree Pred side effects can be horrible, but unfortunately it is the only drug that keeps the inflammation caused by GCA under control. Plus you have to ensure that when you reduce, which obviously you need to do, don't want to take more than necessary, you have to do it slowly enough to ensure you don't go below the level that your body needs.
With GCA you start on a lot higher dose, which obviously works quite quickly on the inflammation, but I think it takes about 6 months to really get it under control, so you need to be quite careful with reductions, and I don't think doctors always realise that.
I certainly agree it's very difficult to get your head around things at the beginning, it's a little known illness -and having to explain what it is can be difficult when you don't really know yourself!
It's not like other illnesses in that a short of tablets cures it, there is no cure. It can be controlled though. It comes out if the blue usually, and stays around for anything between 2-6 years and then goes into remission. No rhyme, no reason - apparently!
You have to adjust your life, take things easier, try and exercise, but gentle exercise like yoga, pilates, tai chi, Nordic walking - all good for balance etc, but not the gym with it's repetitive and strenuous activities - your muscles don't recover so quickly as previously GCA and Pred affect them. Build time in your day to rest, and remember that however bad the Pred side effects are, they will lessen over time, and most importantly it is protecting your sight.
Yes, I was diagnosed with T2 diabetes shortly after my PMR diagnosis - so not due to steroids. My sugar levels went up and down like a yo-yo, but as I reduced the levels came back down into the 'normal' when I eventually stabilised at about 10mg.
But not for long unfortunately. The next diagnosis was late-onset asthma and the treatment? Steroids. It seemed that everything was out to get me!
I did get through it all somehow, with the additions of hypertension and fluid retention and fibromyalgia, not to mention osteoporosis. I'd got used to it all by then.
When it was at it's worst I did see the doctor and admit I wasn't coping well. The cure? Anti-depressants. I know a lot of people mock them, but to me they were a salvation. Within a couple of weeks I was a new woman and was able to sort out my life and take control - the very thing I needed to do.
See your doc for a little chat OK? And it is probably totally necessary to burst into tears.
Don't make the mistake of thinking "the GCA is under control". The inflammation is probably under control if you are taking enough pred but that is a different thing altogether. The actual disease is an underlying autoimmune disorder that causes your immune system to turn on your body by mistake, unable to recognise it as self, and it attacks various tissues causing damage and inflammation. In GCA it is definitely a vasculitis, inflamed arteries. The pred combats the inflammation and reduces the pain and improves the blood flow so the blood supply to the optic nerve in particular is restored. But the ongoing autoimmune disorder remain there chugging away in the background - just as flu goes on even when pills and potions make you feel rather less awful.
GCA, vasculitis in general, are serious chronic illnesses - and never mind about exercising, you need to indulge in some serious TLC and rest, as if you could SEE you are ill. It will get better. I would ask to be allowed to stick at 20mg for a few weeks and see if you start to feel any less awful - your poor body has been subjected to a yoyo of doses and it won't know if it is on its head or its heels. Ask too if you can drop just 1mg at a time - try minimise the rollercoaster of the dose changes, that won't make you feel any better.
The sweats could just as well be the GCA as the pred - I get more sweats whenever I have a flare.
A lot of us on the forums eat a very low carb diet to try to avoid pred weight gain and I think most people would identify with the difficulty of changing your diet anyway - doing it because you MUST rather than because you want to makes it harder I think. It's my preferred way of eating - but I'm unusual in that I suspect.
It will improve - but you will have to be patient. And as the others say - take any help that is on offer including happy pills if necessary. And there is always someone here to listen to a rant.
I can really sympathise with you as you describe exactly how I feel. I have been really ill most days for 10 months and have all the symptoms you describe. Never being sure if symptoms are Pred or GCA doesn't help. The only thing I have been lucky with is that I have no blood sugar problems. Also there is so much conflicting advice from health professionals. Best wishes to you.
Morning. I totally identify with everything you've said re the side effects. I was diagnosed Dec 3 2016. I don't know what 'normal' is either. My only symptoms before diagnosis were related to severe head/face/scalp/ jaw pain - and that stopped as soon as I went on steroids - but I too have had swelling, weight gain, muscle weakness, shakiness from day one of steroid treatment and can never say I feel 'well'. I'm tapering too and now (I think) getting quite a lot of steroid withdrawal symptoms including anxiety (panic) attacks and a range of other funny symptoms. But no pain. On the higher doses (60mg) I noticed an immediate rise in blood sugars - my kids and husband have diabetes so I knew what I had to do to manage the levels - and although blood sugars are still a little high they are improving as my steroid dose is coming down. I've been very fortunate to have had a lot of excellent attention from all sorts of 'ology' hospital departments which has been reassuring on this otherwise quite scary journey!
If you are in the UK, make a point of watching "Trust Me I'm a Doctor" on BBC2 at 8pm on 15th February, as they are doing a feature on GCA to raise awareness of the condition. I know it won't change a thing for you on a daily basis, but it may help those around you to understand more and be supportive - not saying that they aren't already!
If a programme is on BBC2, then anyone should be able to watch it in any country if they have decent internet access. There is a site called Film-on where you can watch UK terrestrial TV free (HD costs more). My husband often watches films on it - I can't be bothered most of the time but I do use it for Wimbledon as the only Gran Slam tennis that Eurosport doesn't carry!
Thanks for this. I have friends in the USA who told me they couldn't watch a BBC programme about Scotland that I thought they would love - she's a McDonald! So I will tell them about Film-on.
I didn't try it in the US I don't think so I hope it works there too - but the guy who told me about it used it in Greece! There are several such sites though most you seem to have to pay.
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Gca
Can anyone who has experienced it please explain the difference between 'withdrawal pain' and return of symptoms when reducing Pred dose?
