Im new here

[Burnley1959]

Diagnosed in January with PMRGCA, also angina caused by a blood clot right artery leading to the heart taking 40mg steroids and statins for the heart. Was admitted to hospital with what I thought was heart burn, which turned out to be a heart attack of which I am now taking dibagitan ( anticolegent). So there is a lot of things going in my body at the moment, complete lifestyle change. Only 3 months ago I was competing in Triathlon. I am not unduly concerned with the blood clot its the PMRGCA fatigue that's hard, early doors still. Started walking each day for the last week averaging 1km a day, hopefully build up slowly but surely.

[DorsetLady PMRGCAuk volunteer]

Hi and welcome,

Sirry to hear you’ve joined our ranks

, maybe have a look at this info post -does also include a link about fatigues and pacing yourself -

healthunlocked.com/pmrgcauk...

…and maybe this on exercise - which is good (for heart obviously) but muscles aren’t the same as before your illnesses, so you need to think about how much you can realistically attain early days without making you feel worse rather than better -

healthunlocked.com/pmrgcauk...

Also have a browse through FAQs if you haven’t already…top few are covid related, thereafter alphabetically in subject …

Any questions, any time….there’s always someone around.

[Burnley1959 in reply to DorsetLady]

thank you for the reply, its kinda overwhelming at the moment, but I'm a upbeat type person and the reassurance given makes me determined to crack on.

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

Yes it overwhelming at the beginning, but better news, generally males come through easier than females.

As I said earlier, if anything is worrying/perplexing you please ask!

[Burnley1959 in reply to DorsetLady]

Thank you

[SnazzyD]

Hello and welcome! You’ve had a bit of a do haven’t you? This is both reassurance that might be hard to hear if you are used to whizzing about, but this will be par for the course for a while and not unusual. The heart rehab has one timetable (3 months?) and the PMR/GCA has an entirely different one (more like 3 years) but not on high doses, thankfully. The fatigue is both the Pred and the autoimmune activity which it doesn’t stop because it is there just to stop the damaging inflammation that comes from it. Once the initial high level of inflammation is dealt with, you then reduce, ideally at a rate that reflects your current autoimmune activity. This is very individual so the guidelines that the doctor will start you on, may need adjusting along the way at some point. You can’t rush, it no matter how much you or they want to be rid of Pred.There are so many of us who were sporty, very active and the like so do appreciate what it’s like to be told to slow down. When you say you will build up the walking slowly, it really does mean slowly and probably far slower than you’d expect.

One positive thing you can do is start a very low carb diet that will keep your blood sugar down and your weight. Normal healthy eating doesn’t cut it because of the way Pred alters your glucose metabolism.

Do have a read of the FAQ’s and ask any questions you like, you can bet there’s somebody who has had the same issue as you.

[Burnley1959 in reply to SnazzyD]

Thanks for the reply , I think the biggest hurdle will be the diet front, although my diet is pretty good it will need fine tuning.

[SnazzyD in reply to Burnley1959]

While on high to moderate doses I had to completely cut out all pasta, potato, maize, flours and rice. My blood sugars and weight were fine with that and others have had the same. Now I’m out the other side, it feels odd to have any of that on my plate, apart from a handful of weekly chips.

[Burnley1959 in reply to SnazzyD]

Ill bet them chips taste fantastic ha ha. Been looking at the blue zone way of eating which I think will be a challenge. Also like a little cheeky beer at the weekend, twill be a sad day if that disappears. everything in moderation.

[SnazzyD in reply to Burnley1959]

I did allow myself two small glasses of white wine a week and dessert was usually berries and dairy free (that’s me) yoghurt or two squares of 85% chocolate.

[Burnley1959 in reply to SnazzyD]

That made me chuckle. Saturday night a couple of beers ( max 2 ) crap telly looks like the new normal. living the dream.

[SnazzyD in reply to Burnley1959]

On high doses I was so emotional that I could only watch the crappest of crap entertainment. Even a chick flick with that false jeopardy in the middle that you know is going to be ok was too much.

[Burnley1959 in reply to SnazzyD]

Its a strange feeling at the beginning I suppose. Every time I say heart attack it does not seem to be coming out of my mouth. The PMRGCA I think Ive got my head round it I know its early days but I feel really confident I got this. SnazzyD no chick flicks here sport all the way, my good lady has set up the bedroom for sport on the box. Ok time for my walk before this crappy weather moves in.

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

Already got it here -,not so sunny Dorset today! 💨🌊

[AshPen9 in reply to Burnley1959]

Do you have a soft spot for the Clarets by any chance??

[Burnley1959 in reply to AshPen9]

The mighty clarets. A fan all my life.

[AshPen9 in reply to Burnley1959]

Thought so. I'm just up (or maybe down?) the road in Rossendale. Faith, pragmatism and a healthy gallows humour required to support the Clarets, according to our friend who is a big fan. Hopefully that will stand you in good stead during your PMRGCA journey. Wishing you all the best, everyone on this forum is so supportive and will be of great help to you. And good luck to the Clarets this weekend!

[Burnley1959 in reply to AshPen9]

AshPen9 thank you.

[Nextoneplease in reply to Burnley1959]

I’m an LFC fan and I find watching them play ( whether well or not so well) gets me through many a low moment…..Good luck!

[Burnley1959 in reply to Nextoneplease]

Cheers I fear the clarets will need a bit more than luck to survive, but we live in hope.

You can do us a favour tomorrow

[Nextoneplease in reply to Burnley1959]

Umm……you play Brighton tomorrow I think?

LFC were at Turf Moor last week (I think) and you gave us a good game. In fact we were lucky to come away with the points!

That said, I’m getting more and more confused with the schedule - I blame the pred! 🤷‍♀️

Hope you stay up - I’d be sad to see you go 😟

YNWA 🧣

[Burnley1959 in reply to Nextoneplease]

you have Norwich were at Brighton

[Nextoneplease in reply to Burnley1959]

Yep, that’s it 👍

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

Just be sensible - as an athlete you know what is - but you’ll need to cut down on carbs.

Occasional beer is fine - early days on Pred, I cut out the wine, for many other reasons as much as the actual doses. After about six months, went back to usual - didn’t notice any difference in illness - whether having a drink or not.

Red wine is supposed to good for heart. ..allegedly 😊

[Burnley1959 in reply to DorsetLady]

Yeah I know, just got to put it into practise.

[PMRpro Ambassador]

How did they treat the acute heart attack and clot? Did they place a stent or just use anticoagulant medication?

[Burnley1959 in reply to PMRpro]

No they tried but could not dislodge the clot, so its being treated with anticoagulant. I am or were or maybe still am, a along distance cyclist and had a blood clot in my leg some 3 years ago and was taking a anticoagulant, they have upped my dose to 150mg from 100mg.

[Sharitone]

If after only a month you can already walk 1km per day, then you are doing extremely well, and I am extremely jealous!

[Burnley1959 in reply to Sharitone]

To be fair and I really don't no if it made any difference, my base fitness is quite high. The hard bit for me I think is to take it easy and try not to push myself to hard, because that's what Im used to, training hard racing harder. Big changes

[PMRpro Ambassador in reply to Burnley1959]

If you read the story of Skinnyjonny you will realise that basic fitness doesn;t necessarily mean anything once PMR strikes. He was doing 10km and climbing in the Himalayas - and was in a wheelchair for a time!

healthunlocked.com/user/Ski...