week two in the big brother house

[Burnley1959]

The end of week 2 with PMRGCA with the addition of a Coronary thrombosis.

Looking back this all started in early September 2021, I am a self employed Tutor within the gas industry, worked for National grid with 45yrs experience then took early retirement and then started my own training company some 6 years ago.

I was getting echos in my head, like when you go swimming and water gets in your ears but I could not clear the water hence the echo in my head when I talked Visit to the Dr, refereed to ENT consultant, diagnosed and got grommets in both ears ( 62 yrs old with grommets) A couple of days later got aching in my jaw and neck and what I assumed was heart burn, a real pain in the top of my chest. This lasted and progressively got worse until mid-November when the aching spread to the arms and stomach with a slight ache in the legs. Another visit to Dr ( which by the way is not that easy nowadays) a series of blood tests followed by more blood tests, a visit to a real Dr, again more blood tests culminating in the Dr placing me on the two week cancer path. Tests time, had a CT scan came back clear, had a MRI scan came back clear, An electrocardiogram (ECG) scan came back clear. And while this was all going on my body was aching both muscle and joints, like when you get lactic acid build up after exercise but you've had no exercises, probably sleeping most of the day and night, body feels like it is slowly but surely breaking down.

We are now into the new year ,early January, this time because of the body is unable to move we had request a Dr home visit, which duly came followed by more blood tests culminating in a phone call at 0200 in the morning asking me to attend AE ASAP, blood tests have come back with abnormal or high indicators, we went to hospital at approx 0230 was seen by triage around 0300, called into the treatment room around 0700 more blood tests followed by a ECG, seen the consultant AE who diagnosed PMR was put on a drip and prescribed steriods ( I do not no how many ), placed on a trolly wheeled into the corridor and was there 19 hours waiting for a bed, no food no drink no water.

I. will continue the tale later.

Week 2 feeling pretty positive got numerous drugs( Pred 40mg) to take both morning and night ,set myself a target of walking 5km in the week of which I have achieved although a lot of discomfort , fatigue, setting myself target really does sort my head out emotionally. Went out to the shops for the first time today and went to Tesco shopping ( got really giddy about going out with my good lady keeping a watchful eye on me, she has been a rock although I did see her checking the life insurance policy hehe) now back home in bed tired watching Burnley against Brighton( boom burnley score). Struggling sleep at the moment which is causing fatigue but I suppose with all the drugs its probably expected until the body gets used to. Appetite which had disappeared with me losing over 3 stone ( Im 6ft 1` and was 16 st so not what you call slim but not fat either so 3 stone is a lot of weight) which has now returned so eating quite a lot, the diet will need attention. So all in all week 2 has been ok plus got cuddles from the grandkids which was beyond good. Not many downs with plenty of ups and feeling positive about the future, I know its only 2 weeks but it feels a lot longer and I feel stronger Stay safe, it is not the mountain we conquer but ourselves take time to do what makes your sole happy. Till next week. see ya

[Nextoneplease]

Wow, Burnley you’re going through the mill!! And like all the best writers, you’ve left us with cliffhangers…..like, what happened with the cancer pathway and when did the coronary thrombosis happen?!?

Glad you have a lovely lady wife looking after you. Enjoy the rest of the match (Brighton 0-2 Burnley as I write).

Looking forward to your next instalments 😊xx

[DorsetLady PMRGCAuk volunteer]

Tesco’s on a Saturday… phew, you know how to live 🤣😂

This might help on sleeping front - although Burnley v Brighton would do it for me - a rugby lady myself!

healthunlocked.com/pmrgcauk...

[Burnley1959 in reply to DorsetLady]

Tesco was a treat you wanna try B and M now that's another level ha ha Im beyond being giddy looking at the hapdashery and gardening section. Living the dream 1st time out in months little things please little, you no the rest ha ah

Rugby Sale Sharks and Salford reds. Northern bloke nearly had to put my big coat on yesterday with all the weather malarky.

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

RU - so Sale sharks - son used to go there when he lived oop north! Now he’s returned to his southern roots - it’s Exeter chiefs….

Your big coat might need another outing in the next few days 😳….

Take care.

[Burnley1959 in reply to DorsetLady]

straight back at yer young lady

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

“young lady ” ha… more like big sister. But I’ll take it 😉

[PMRpro Ambassador]

If you had told us the start of your journey from September to November I bet there would have been a chorus if "It could be GCA" on the basis of the ears and jaw pain plus PMR-type aches and weight loss. Which the November doc obviously registered to send you on the 2 week cancer path! There is also an increased risk of MI or stroke in the first year after a diagnosis of GCA.

But while I realise the satisfaction of the walking - if it is causing discomfort and pain, your body is telling you it is too much for now. You have a serious systemic autoimmune illness - which has simialr effects on the body as a long-lasting real influenza. You wouldn't force yourself to exercise with flu - at least, I hope you wouldn't. Be careful, because it may set you back and that is the last thing you need or want.

[Nextoneplease in reply to PMRpro]

"It could be GCA" was exactly what I was thinking! (Shouting, almost!) Love the pacey narrative style….

[Longtimer in reply to Nextoneplease]

Me too, but not the medics it seems....worrying isn't it!

[Burnley1959 in reply to Nextoneplease]

Thank you Nextoneplease

[SheffieldJane]

Wow that was quite a journey! The experienced on here would have recognised all of this quite quickly - GCA with a PMR presentation - even the ear thing is recognisable. I am glad that cancer was safely eliminated. So now it’s your job to manage this condition by pacing your activities, lots of rest including a nap after lunch because we don’t get great sleep. Be alert for any issues with your eyes a thorough eye health check up is a good idea. My optician does one for £40.00. 40 mgs is a modest start dose for GCA, so be alert for pain in the jaw upon chewing and any unusual headaches or eye symptoms, this would indicate that your Prednisalone dose is too low. Weight loss is part of the disease but Prednisalone over compensates for this and we can find excessive weight gain a problem in the months to come. It is a good idea to eat a healthy well balanced diet that is low on carbs.

When the time comes you will begin a gentle taper down from your Pred dose, this should never be more than 10% of your dose at a time. Familiarise yourself with the FAQs section on this site. It explains the management of these conditions very well. Sometimes our doctors are not massively familiar with all the intricacies of our diseases. This can be unhelpful and sometimes confusing. They are still relatively rare. Do you have a Rheumatologist? A good Rheumatologist who is familiar with GCA is a Godsend. This is a helpful, supportive and knowledgeable site. People will answer your questions as they arise. I am glad you found us - welcome! I won’t bombard you with anymore info - there is a lot though. You are in it for the long haul though and you need to take care. So boom Burnley!

[Burnley1959 in reply to SheffieldJane]

SheffieldJane thanks for the in depth reply, it is very much appreciated. Im kinda ready for the long haul with a lot of help and advice from this forum

[jinasc]

Happy to see that eventually you have a diganosis and hopefully a good rheumy, if not let me know by a PM.

Little to add except to say: don't push it, it will bite you back big time - comes when it wants, goes when it wants and you cannot win this one.

Forget a visit to Tesco, but make a trip to the optician.

if you already wear specs, then change them to re-actolite rapide, if you don't you need a good pair of sunglasses. Pred and sun don't like each other and can start cataracts off and if you already had them they will grow.

5km at present it too much, apart from the GCA, you also have PMR and the oxygen supply to your muscles is impaired. Take it easy, 45 mins each way will do at present.

You do not want to add anything to your long list - so don't bother shopping, just visit a good optician.

Try and find out how many pred you were started on and keep a note of everything with dates.

Finally I wish you a safe journey that no-one ever willingly undertakes, your life has changed once more and you will get used to it slowly.

Always remember that you are still a person whilst being a patient and knowledge is power and learn to listen to your body.

[Burnley1959]

jinasc I take heed your advice and thanks for taking the time to reply, all what you say rings true. thanks again

[Sophiestree]

I love the way you have written this, although tough for you, you sound like a positive person, but sorry it has been so tough. Everyone has given all the very best advice..... my brother in law used to play for Burnley ... go Burnley is all I can say!!!I'm watching that table feeling tense every time ...

[Burnley1959 in reply to Sophiestree]

Sophiestree what's your brother in law called ??? felt tense yesterday then did a little excited dance for the victory. 🕺🕺. UTC

[Sophiestree in reply to Burnley1959]

I'm always pleased when Burnley win, and have a little smile on my face.He played in '68-'76 so a long time ago now... Mick Docherty

[Nextoneplease]

I was pleased too Burnley (3-0 no less 🎉) especially as LFC finally got their act together and won too! 🧣 Only fly in the ointment - Villa lost - my childhood team and currently managed by the great Stevie G x

[Burnley1959 in reply to Nextoneplease]

The legend that is. Fantastic full back from the late 60s and 70s the first and only captain to lead our club to the FA Youth Cup, cheers for sharing.

[Sharitone]

When/if you go to Tesco, don't forget that that high doses of steroids quickly put you in the 'immunosuppressed' category.

[Burnley1959 in reply to Sharitone]

Sharitone it also bores the life out of me, it was my first time out for a while so I got a little giddy, but point taken, I'm on a steep learning curve of which I am truly thankful for this forum.

[PMRpro Ambassador in reply to Burnley1959]

Get yourself some FFP2 (at least) masks if you want to tour Tesco ...

[Burnley1959 in reply to PMRpro]

Yeah your right. With all what's going on in my body a mask is imperative. don't need nowt else catching.

[Sharitone in reply to Burnley1959]

What you also need is everybody else to wear masks! A couple of them are still asking people to do that, Sainsbury's and Waitrose, I believe

[PMRpro Ambassador in reply to Sharitone]

With the FFP2 masks they catch 94% of viral particles above a certain size. Both ways. Mainly because they fit more closely. I've used one (like most others) since last summer. Green for xmas, bright pink to cheer things up, white early on, have a blue on but it doesn't fit as well as the others for some reason!

There was an article I saw in the last few days from the ONS reckoning the figures being published are actually about a third of the actual case load. They are only the reported cases - lots of people don't report their positive LFT and of course a lot of people don't even do them because they have no symptoms. Or they do but don't want to stay off work for whatever reason.

[Burnley1959 in reply to PMRpro]

And what's common is that the antigen test is not being completed correctly. I'm a tutor or was before this crap hit home, in universities and private training institutions candidates and learners are being asked to supply a negative test for example, test monday for Tuesday, test wendnesday for Thursday etc, people are filling in a negative test without actually doing the test. Common practice

[PMRpro Ambassador in reply to Burnley1959]

And even if they are doing it correctly at each stage - probably not since if you don't choke on it it wasn't right! - you can be negative in the morning and positive by the evening so you can breathe all over people the next day ...

[Burnley1959 in reply to PMRpro]

When I say they are not doing correctly, They don't do the test just fill out the form. Ridiculous

[PMRpro Ambassador in reply to Burnley1959]

Well yes, I realised that - and it is why there are official testing centres here. But it also applies if any stage of the testing isn't done correctly ...