The story so far...Part 3!: Up until I was... - PMRGCAuk


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The story so far...Part 3!

Kael-gca profile image

Up until I was diagnosed with GCA I used to be rather smug about not having to take any regular, long term drugs. It was something of a shock when I had to start pill popping and quite a struggle working out the best way to swallow 14 preds plus the other precautionary tabs. Although warned, I was not prepared for the other side effect which was (sorry all!) constipation and subsequent haemorrhoids. Something I have never suffered from.

Three days of hell ensued. The pain was relentless and the only painkiller I could take was paracetamol (next to useless). I now had to wait for the steroid cream to work. Hardly slept and the only relief was to sit in a hot bath. I was most surprised by the feeling of exhaustion that developed during that time. I felt so weak that the simplest of tasks like popping out the preds was a struggle. I am still not sure why it affected me so badly and can only guess it has something to do with my overall condition.

On the fourth day, I woke from a better nights sleep and it was like a miracle. The pain had gone and I felt my energy returned. It was as if someone had flicked a switch.

The moral of the sordid tale is to beware and get prescribed a gentle laxative. I have had no problems since.

15 Replies

I was smug too about not having to take medication. I now know that I didn't value my good health as I should have done. I'm glad to say that I didn't suffer those particular side effects,but there were others, like insomnia (despite the crippling fatigue), burning itchy legs and feet especially at night, terrible brain fog and rampant incessant hunger. Unlike some other more stoic souls I'm afraid I rather gave into the hunger for a while and gained 20 pounds as a result - not good as I was already a couple of stone overweight. I'm now down from my initial 60 mg per day of pred to 10 mg per day and the side effects have diminished greatly.

I can remember very vividly how I felt around the beginning of 2018 and I certainly feel a lot better now, as well as more hopeful for the future. I lost some of the gained weight but not enough, and had my New Year resolution made for me just after Christmas when I noticed that a new Slimming World group was opening at a community centre only 5 minutes' walk from home. I'd said for ages that I'd like to join but there wasn't a group near enough, so now I had no excuse and I went to my first meeting last week. So far I've followed the regime closely with surprisingly no hunger pangs. It will be such a boost to my morale (as well as a good thing in itself) if I can make a success of this.


God luck, hope you do well. Good on you for signing up.

God luck, hope you do well. Good on you for signing up.

I too was proud to not need any medication. After a heart attack I got off all of my meds in 12 months although the doctor thought that I was crazy and said I was taking risks. I wasn't I ended up fit and well for 12 months until the GCA struck.

When I was diagnosed with GCA I thought I could do the same with this illness. 2.5 years later I am still on the pred. At 5mg I am tired and aching but no longer in a hurry to reduce. I have survived all the side effects at different doses so have a much more relaxed attitude to being stuck on meds now.

Kael, why did you have to take 14 tablets?

Kael-gca profile image
Kael-gca in reply to Meggsy

Hi Meggsy. My initial dose of preds was 70mg so had 14 x 5mg to take. I actually got the GP to ring me to double check that was right without thinking it through first. Probably because I hated taking tabs unless absolutely necessary. They are so hard to swallow for such tiny objects.

Meggsy profile image
Meggsy in reply to Kael-gca

I just asked because I started on 25mg and my GP prescribed 25mg tabs, so 1 tablet.

Carrollee profile image
Carrollee in reply to Meggsy

Hi Meggsy.

Didn’t know there was a 25mg tab. You live and learn eh cc 🤗

PMRpro profile image
PMRproAmbassador in reply to Carrollee

They aren't available everywhere and in the UK will have to be ordered specially - and are far more expensive than telling the patient to take a load of 5s!!

Carrollee profile image
Carrollee in reply to PMRpro

Oh ok thanks “money money money” 🤗

Meggsy profile image
Meggsy in reply to Carrollee

Hi Carol,

We’re probably in different countries. I’m in Australia. I didn’t realise they weren’t available everywhere. They would certainly make it a bit easier for those on high doses of pred. 🙋‍♀️

Meggsy profile image
Meggsy in reply to Meggsy

Sorry Carrollee, didn’t mean to shorten your name. 🤭

Carrollee profile image
Carrollee in reply to Meggsy

🤗 No worries Meggsy as that is my real name. They would have come in handy when at 60mg! Just got down to 6mg! 😁 Pmr March 2015, GCA June 2015

6mg - wonderful! Keep well!

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