After quite a busy seven days I went for a routine steroid injection to a very painful knee and my GP had just received a blood test from the hospital here in Plymouth and I had a score of 120 for something which he told me could and probably was GCA. He wanted to make sure and I went to our local hospital and now I have GCA. MY GP (bless him, good bloke!) put me on a really high dose of Prednisolone and 75mg of Aspirin before he sent me to the hospital.
The hospital confirmed GCA and that my blood count had dropped to 19 overnight so my GP was right on there.
Now? I have been told to take it easy for a few days and am on a 12 pred tablets a day now.
I am just a shade overweight ... 8lbs and it's not really noticeable but I am determined to get out and about in our neighbourhood asap. Any tips? Advice?
You can still get out and about- but you may need to build in “rest times” - which you haven’t needed to in the past. Just a bit of thought beforehand. Life goes on as before, but may in the slower lane for a while. On 60mg of Pred you probably will feel super active for a few weeks until your body adjusts to the Pred.
Be wary of the sun, the Pred will make your skin a lot less resilient than previously, so cover up a bit more and use plenty of sun cream, but enjoy it! I think a bit of sunshine cheers most people.
By June you should have got a better handle on your illness, so enjoy your holiday. Make sure insurance company know you have GCA, and take medication in original boxes in your hand luggage along with a copy of your prescription.
All that lovely sun will boost your VitD levels, all to the good.
Do you have to take meds in hand luggage? I put some in the hold and some in my bumbag to keep near me at all times (paranoid or what 🙄) I’ve never taken a copy of my ‘script though, mainly coz they’re electronic now and I never lay my hands on it. Should I?
I always felt safer when I had GCA if I took them in hand luggage - depends how many you have of course, and where you’re going. Some countries are a bit suspicious of drugs even though they are legit! That’s why I always took a copy of prescription as well! Although, as you say, that may be become more difficult as we become more digital.
Strange how pharmacies differ, mine gives me a copy of the paper prescription showing all my medications even though I've ordered electronically. The ruse was that G.P. Practices got out of printing the prescriptions handing it over to the pharmacies. G.P.'s saved money on printing costs, the Pharmacies didn't.
Only got G.C.A. am male and down to 6 mg Prednisolone, I'd already printed a copy of items I'd order off the database.
Regards
Coilin.
Hi David
It’s been a bit of a whirlwind for you but Congratulations to your GP on picking it up & sending you straight to the hospital to get everything sorted.
You may feel like Superman for a few days with the high dose, really though a period of rest is what you need. You may find you can’t sleep but try resting at least.
As DL says just be a bit more mindful of the sun as you could be more sun sensitive.
And, keep your Meds with you when you go away, l always put mine in a Lock n Lock Box with a copy of my prescription & keep in my hand luggage.
Keep your Carbs low especially refined ones but the main thing now is getting well again.
I'm afraid I'm not going to be as optomistic and cheery as DL.
First of all, do speak to your rheumatologist about flying on holiday with GCA. Some are very unhappy about people travelling abroad with GCA in the first 6 months - and medical care in the EU in June may be a very different thing from now. I live here - I still have no idea how or what my medical care will be or how it will be done. No deal is STILL an option in 2 weeks time - sorry, but it is true. And no deal means no EHIC medical cover. Have you already got medical travel insurance to cover you for that holiday? If so, this will be covered but if you haven't, getting medical cover for the GCA may be rather more difficult as it would be a pre-existing event which occured in the 6 months before travel. Some time ago there was a man on the forum who lived in Cyprus and who really struggled to get medical care because no-one had heard of it - the further south you go towards and around the Med the less common it is.
One lady insisted on going to Spain a few days after diagnosis - and spent the entire holiday in her room because she couldn't bear the bright sun, the heat and the humidity. The pred made her dizzy and she tripped - adding bruises to the catalogue. In many respects PMR is harder to manage in terms of activity on holiday than GCA but you can still sit in the shade and read - GCA is a much more serious problem judging by what people have told me over the years.
Weight - cut your carb intake. That will reduce the spikes of blood glucose which then plummet and trigger the craving hunger pangs while the insulin stores the extra carbs you eat as fat in the expected places.
You have been very lucky in your GP and hospital and it will be fine - but the next few months may need some adjustments to be made.
Thank you everyone. We do have EHIC cover although I wouldn't rely on that. We do have insurance through our bank though and that will be updated by my wife We lived in the States for a very long time and are, nervously, aware of health care and insurance!
I will keep myself from loafing in the sun and do that under an umbrella or two. I really enjoy just loafing in the sun so any warmth will be fine with me.
Food? I should have said it really but I'm really very conscious of food. I have been a strict vegan for 35 years and am very mindful here. Although! I did trough a pack of poppadoms from M and S after my lengthy time in A and E... I love Alpro Soy Milk and Puffed Wheat...
I do feel a bit out of sorts at the moment and will take it easy from now on. The PMR is not as bad as it was but still a bit achy.
Thank you everyone and hello to all from my first post!!!!
That's what I am trying to explain: you CANNOT at this stage rely on your EHIC still being valid.
By the way.... Regarding travelling with medicine. I always carry a bag on me with two/three weeks supply in PLUS a suitcase I send off as usual so I hope I'm well covered. These are all in am/pm daily boxes with cling film wrapped around and I have (in the past) carried a printed prescription from my GP.
Hi and welcome. You have had all the good advice except get airport assistance and maybe a little extra pred the day you travel. First time I didn’t and spent the next morning in bed! If you feel embarrassed because you don’t look ill then LIMP it works every time. All good wishes.
Oh my! I did put on a limp last December and got whizzed right to the front and had loads of help. I felt a bit guilty really as I felt great when we arrived at our cabin (cruise around Caribbean - not bragging it was inexpensive. I don't brag.)
The ships crew and airport staff were all over me helping. Having said that I had recently had my ankle and foot fused and was walking with a Nordic pole so was a bit incapacitated.
Good another man, we are rare on this forum, So do walking sticks. I have G.C.A. plus a plethora of other conditions including Osteoporosis. On 21/03/2016 I fractured a spine bone and have needed a walking stick ever since. Although I have always gone out of my way to hold doors open for young ladies and mothers with push chairs or prams, now they do it for me, but I am always profuse in my thanks it does make me feel old. I am over seventy but look about sixty, I don't know why though it may be the monthly injection of Testosterone needed for one of my other conditions.
Please keep us informed and lets us know how you progress, it is so important to know this forum exists and it is so helpful
Hi Colin, It's lucky I'm a feminist here then! I use a Nordic Walking Pole as I find it more comfortable! I've had a stick forever as I had my first big surgery back in 2005 and had about six since. All are foot and ankle related. IF! You have foot and ankle pain and the hospital consultant and your GP offer you an ankle fusion I would literally jump at it.... big advice though is to get the surgery done in the winter as the "indoor time" can be boring, so it's just as well the weather isn't too nice out there.
If you saw me you wouldn't think I was a bit knackered as I too like to appear younger without dressing liking a kid. I come from the Mod/Rude Boy era so like to look spiffy.
This GCA adjustment is really weird and I'm a bit all over the place at the moment. I am so glad I joined this group whilst researching PMA! I've had some great advice
I love to read about these GPs who have actually heard of GCA and know they must treat it as an emergency. I had a different experience with mine which meant that I had several months in which I could have lost my sight. Others actually have done so because of delayed treatment. I'd say follow what PRMpro says regarding your planned holiday - be cautious in these unsettled times.
Absolutely knackered now. Can't go out so loafing!
I am so impressed by all of you - still going on holiday with GCA and Prednisolone.
I was completely steamrollered after the first few weeks, and have remained so until now (16 months later). I am seeing the glimmer of an improvement this past fortnight - but not fit for export yet. I can now reach Salisbury's again.
I'm new to it all Arthur. Life goes on and I can see a bit of a pattern emerging. I've never felt comfortable shopping so get Tesco deliveries. I don't mind the hit and run type shop when it's quiet though. We had already booked our holiday on June 1st and have to admit I would much rather be knackered in a warmer climate. loafing and people watching is like a pastime to me D
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We lived in the States for a very long time and are, nervously, aware of health care and insurance!
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