Learning about GCA

[Smellydog9]

I have been on steroids since February for PRM, properly unwell for quite a while before that. Over the weekend I had a period of very disturbed vision with headache and jaw pain. Now increased from 10mg to 60mg prednisone. Eye check isn’t showing any long term damage and I have a plan going forward for steroids. Bit I’m struggling with is feeling grotty and trying to pace myself as I was previously very active. Also quite scared to be honest. What helps other people with all this. It seems to be taking over my life x

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

And guess you mean GCA, and yes it is is a bit scary at the beginning.

Perhaps have a look at my intro post for a start - it might not make a lot of sense at the beginning, but please keep it so you can read it it again - when it will make more sense as you get more used to dealing with your illness -

healthunlocked.com/pmrgcauk...

There is lots of information on here in the FAQs - so have a look sometime -but don’t try and cram in too much too soon - just take your time to take things in slowly…but obviously if there is anything worrying you please ask, there is always someone around.

[Smellydog9 in reply to DorsetLady]

Thanks, and yes GCA. Think I have brain fog too 😀

[DorsetLady PMRGCAuk volunteer in reply to Smellydog9]

Brain fog? Quite likely…but you can edit title easily - and then you’ll get a lot of related posts

[SnazzyD in reply to Smellydog9]

oh yes that. With Covid I had months of brain fog on a go slow but with high dose Pred I had brain fog but my brain wanted to talk all the time. I fear it was worse for those around me! 😂

[SnazzyD]

Hello there. Yes this is a shocker when it happens and nearly all of us were very active etc etc. and struggle to adapt for a while. I went straight to GCA from only two days of symptoms that I would say put me off my stride and going straight onto 60mg made me feel worse in many ways than I did when I walked into A&E. I think when you think you’ve done steroids on doses for PMR, the wallop for GCA must be disconcerting. You feel rubbish because of the autoimmune activity that will still be going on because Pred only prevents damage from the inflammation put out by it. Also, the high dose comes with added extras. To be blunt, this is par for the course but it isn’t forever. Sometimes with PMR, the pain goes and people can more easily if inadvisedly go back to their previous activity with different levels of success. Normality of sorts carries on but not always. It is a false dawn really because the steroids give extra zip to some that can mask the disease effects that really need to be like proper illness. In a way 60mg forces you behave like are ill which you are but again, it isn’t forever but you need to be patient which is jolly hard. We can’t see GCA, most people have never heard of it and for a while we feel the medication is worse especially when no end point to the condition is given.

It is common for distress to be caused because people are not warned just how vile one can feel so they think there must be something wrong or they are having an unusual reaction to Pred. It is imperative that you treat this like it is, a severe systemic illness with strong medication to match. It is much easier if one accepts the new order for now and stop trying to cling on to what we did before. The main way is to listen to the body and rest even though the Pred tells it go 100 miles an hour, not sleep, worry about everything, eat all the time. If you are a helper and a doer for others, start saying no. It is really hard, as I found, if you can’t do what made you feel good about yourself, alive or feed the soul, such as exercising, hours of gardening, etc. The good thing about this is it teaches us that we can survive without those things and another way is possible if we let go for a while instead of railing against it. Bit by bit you rebuild.

As the dose goes down the tired but wired feeling reduces but for now cat naps may have to replace your customary full night’s sleep. Another effect you need to be aware of is that for some, the Pred induces a feeling of being drunk and uncoordinated in the few hours it reaches a peak in the blood stream. It’s very disconcerting and also get better over time. I had this and in the end I took it at bed time to sleep through the worst and then wake at 4-5am when the stimulant effect kicks in.

Eat a low carb low salt diet to avoid blood sugar swings, bloating and rapid weight gain.

We all got through this and so will you.

You’ll get more replies so sit tight.

[Bluey-1]

Oh how I feel for you. Have a look at my bio and posts. I was in your position June 2022 and for the time I was on 60-40 mg of steroids I cannot remember now. Jittery, insomniac, weak, very ill and sad that my life seemed to have stopped. The best advice is from Snazzy. Most of us on this site have been active, physically and socially. You do have to listen to your body and get rest, even if it’s not restful with the steroids swirling around in your system. Remember they’ve saved your sight. It was a shock getting diagnosed with this strange GCA illness and I’ve had to give in to it. I think that acceptance and I have to say, reluctant lifestyle changes, have helped with my tapering over the winter. As the steroids reduce slowly the effects are less. I haven’t found it easy as this illness is unpredictable and getting the balance of activity right remains a difficulty.

I was bemoaning the situation to my sister about the possible length of time ahead to potential remission when she replied, ‘but you’re not far off one year of it now’. An interesting perspective! Although I still get rogue restless nights followed by excessive fatigued days things are better. I still have times when I feel fed up that decisions about what I do are ruled by my body and not my head but it is what it is and I’ve had to learn to balance activity with a lot of rest. My life is very different from B-GCA, quieter, but I hope there will be remission for me at some point and I can get back to more of my old sociable life.

[PMRpro Ambassador]

Hi and welcome - I know a lot of theory when it comes to GCA but I'll lesve you to the capable hands of Snazzy and DL who have the t-shirts ...

[Zappata]

But do rest plenty and force yourself to do it even when you don't want to. I didn't rest enough at the start and paid for it later, in fact looking back I realise I have never rested enough all my life. Always thinking it was healthier to be active all the time. Doh!

[Choco-Holic]

Hi, just thought I’d pop on and offer a bit of support as like yourself, it pretty much came out of nowhere! I was having problems of feeling generally unwell at first but nothing I could put my finger on until I had bother getting out of my bed to physically stand, walking upstairs etc. My inflammation markers CRP and ESR were really high so Based on symptoms and markers PMR was diagnosed and I was started on 15 mg prednisolone. Fast forward 3 weeks I got severe jaw claudication and tenderness around the temples, GCA was diagnosed after I’d been fast tracked to rheumatology. My steroids were increased to 50mg. Like yourself, I was always fit and active and loved jogging so it was really scary and upsetting to think that I couldn’t manage this activity. It is a scary experience when first diagnosed, but with careful monitoring of inflammation markers and pred doses it will get better. It was a bit of a slow process tapering down for me as my CRP/ESR would fluctuate but with careful guidance and the most invaluable help from this forum and the experts within it, I got through. This forum was the first thing i read each morning as it makes you feel less alone and knowing that we’re all travelling the same journey helps. All I can speak from is my own experience and you have to realise that you can’t continue to do what you did especially when on high doses of pred, just listen to your body and rest when you need to. Insomnia was a real pain for me when on higher doses. There is light at the end of the tunnel and rest assured I never thought it would ever come to me, however, I’ve been free of prednisolone for around a year now and feel as well as I’ve ever felt (apart from old age haha). You will get better, just take each day as it comes and know you will too. If you ever need to message feel free as it made life more bearable knowing that this community was always here. Take it easy for now 😉

[Smellydog9 in reply to Choco-Holic]

That is so helpful and absolutely a mirror image of what has been happening for me. My CRP is still 160 plus after 7 weeks of steroids and it feels horrid. I’m usually a glass half full person and will get through this I know but it is definitely a new way of being for now. Thanks for your message x

[Choco-Holic]

you’re very welcome 😊 x