Week 6 and 7 in the big brother house.

[Burnley1959]

Good morning my forum friends, not a great deal to say this week, Still on the 40mg PREDs and all the heart attack pills ( lots of ). it seems the PRED is keeping control of everything, Im still doing my daily walk without much trouble apart from the floppy foot flopping about in a floppy fashion.

As previously stated I received a letter for a consultation. The letter stated that the biopsy report confirmed PMRGCA ,happy days they have finally diagnosed me, now I can get my head round it and start to plan, which is a release. Had my consultation which was to be fair quite an ordeal.

Prof - Good morning what can I do for you

Me- You sent for me ??

Prof - Ah yes can you tell me what dosage , you are taking Pred, are you on and when did you start taking them

Me - You have`t read my notes have you

Prof - NO

This conversation went on for some time, to and fro about what the medication is for and the need to start reducing the PRED and introduce METHOTREXATE at 15mg weekly and Folic acid 5mg the day after with counselling from a specialist nurse.

Prof - How was your stay in hospital

Me - I was treated for heartburn for two weeks when I was having a heart attack

Prof - Oh I'm sorry about that but I do not specialise in cardiology

Me- Then what do you specialise in ??

Prof - Rheumatology

Me - I beg to differ, try reading my notes before consultation might help.

End of consultation

I have now received a copy of the consultation which states that presumed GCA shows chronic inflammation of the adventitia with NO giant cell.

The previous letter and the consultation with the Prof both confirmed with the biopsy that PMRGCA was suspected and confirmed. Confused .com.

I am now waiting for a appointment from another specialist, I decided that the Prof needed to go, and to be fair she didn't argue in fact she was quite pleased ha ha.

anyway onwards and forwards stay safe people and keep the faith.

ps - I`ll report on my 2nd hospital stint next time.

[SheffieldJane]

You are funny Burnley1959. It’s refreshing. It’s not a good idea to alienate our doctors though, tread carefully. 😂

[Burnley1959 in reply to SheffieldJane]

It was done with the upmost respect, with a slight cheeky chappie. But I do think that the sun shines and a reality check aint a bad thing. She really didn't no the case which was slightly upsetting, so on to the next consultant, who comes highly recommended. Got a Drs phone appointment this morning to find out wether I can fly, this here body needs SUN, so going to Spain for a month if I get the ok.

[PMRpro Ambassador in reply to Burnley1959]

We have had people who flew to Spain immediately after diagnosis despite being advised by us to wait a bit - she was on high doses of pred and still very wobbly because it wasn't well controlled. She fell and found the sun and heat too much and spent the entire time in her room which was a bit of a waste. Otherwise - most of us have flown quite a bit once we have settled down on pred. However - you DO have the added spice of an MI to bear in mind!!!

caa.co.uk/Passengers/Before....

[DorsetLady PMRGCAuk volunteer in reply to Burnley1959]

Flying not really recommended in first six months of GCA- plus as PMRpro says an MI might also prove problematic-even if medics do say yes - just ensure insurance company does as well!

[PMRpro Ambassador in reply to DorsetLady]

Yes - forgot to mention that the insurance position is probably more significant than anything else.Though the CAA link I added doesn't seem too bothered about an MI!

[Flivoless in reply to Burnley1959]

I'm in Spain (Andalusia) now and the weather this past week has not been great. My advice would be to wait a bit for both health and weather reasons.

[Burnley1959 in reply to Flivoless]

I’ll be in Guardamar del segura this time next month a very healthy 19 degrees slightly chilly at night.

[PMRpro Ambassador]

Hmm - would have been instructive to be a fly on the wall!

But given that ANY chest pain should be taken as cardiac in origin until proven otherwise and I know that and so do all paramedics - can't say I'm impressed that a fully paid up physician doesn't even if they now only take an interest in rheumatology. And taking an interest in one's patients shouldn't be an optional extra ...

[Burnley1959]

Instructive indeed, it seems the older I get more I get away with. mmmm

[PMRpro Ambassador in reply to Burnley1959]

Who are you seeing next?

[Burnley1959 in reply to PMRpro]

Indeed, if she said that her expertise was not in cardiology she said it at least 1/2 dozen times, hence what do you specialise in.

[Burnley1959]

Dr J E brockbank. Royal Blackburn

[PMRpro Ambassador in reply to Burnley1959]

Good luck - though it seems likely he can't be worse. But same department????

[SheffieldJane]

I hope you do get away. Consider airport assistance - you skip all queues and most of the stress. We don’t mean to be killjoys we are just concerned for you. Many of us can relate to the frustration of a disengaged doctor. The trouble is they write everything down so subsequent doctors close ranks.

[HeronNS in reply to SheffieldJane]

"They write everything down" ... but apparently don't read what others write.

[SheffieldJane in reply to HeronNS]

They do if they write that it is all the patient’s fault. Well in my case. You can see the attitude alter. I’ve been bothering them a lot lately.🤣

[HeronNS in reply to SheffieldJane]

🤦

[Sharitone in reply to SheffieldJane]

Inn the UK, they apparently have a code for describing patients, now they are no longer allowed to write what they like in secret. My clinic letters always start with 'this pleasant lady' so I'm guessing that 'pleasant' means something like 'fusspot'!

[SheffieldJane in reply to Sharitone]

😂. I dread to think what the code for neurotic, hypochondriac is on my notes. I am constantly trying to link various symptoms and to search for effective drugs or other treatment. I make them tired.

[DorsetLady PMRGCAuk volunteer in reply to Sharitone]

My late hubby was described as “pleasant affable gentleman” by his cardiologist one time! Think he probably meant “lippy person who always has quick response and a smile but doesn’t listen to a word I say”

Slightly better than an army officer who wrote - Sgt Major “#%#@“ is “a loveable rogue” .. mind he was correct!

[Burnley1959 in reply to DorsetLady]

I would take loveable rogue all day long. Visions of grandeur is another. he he

[PMRpro Ambassador in reply to Sharitone]

I think it really means "not going to hit you"

[Sharitone in reply to PMRpro]

😂

[Tahiri in reply to PMRpro]

😂🤣

[Burnley1959 in reply to Sharitone]

With what were are going through being a fusspot is a good thing, we aint doing a rehearsal here this is life.

[jinasc]

Areas of specialist interest: Spondyloarthropathies (Psoriatic Arthritis and Ankylosing Spondylitis) and Paediatric Rheumatology

Would be interested in how you get on...............

When I was diagsnoed with GCA, the GP and Consultant insisted no travel for 6 months.

[Nextoneplease]

Hi Burnley 😊

Sorry you’ve been having a difficult time and that your rheumatologist turned out to be……less than helpful 🙄

Wishing you well with the new one, and with your travel plans if you decide to go. As others have said, it does feel like slightly early days to be getting on a plane.

All the best to you xx

[Burnley1959 in reply to Nextoneplease]

Cheers. Everything it seems is ok. So fun in the sun it is. To be fair more of a rehab with factor 30

[Nextoneplease in reply to Burnley1959]

Sounds good 😊 Enjoy ☀️☀️☀️x

[Burnley1959 in reply to Nextoneplease]

Dr is fine with travel. Just got to see the insurance company. This is gonna cost if they say I can travel. Oh well here for a good time

[Izb1 in reply to Burnley1959]

Would be interested to read who you booked with and how much it will cost. I have just been diagnosed with GCA and not yet seen anybody for treatment but have a trip booked for Tenerife in June, am really hoping I will be able to go x

[PMRpro Ambassador in reply to Izb1]

Have you already got insurance? If you take it at the time of booking, that is it, it is valid without surcharges until it expires. If it was an annual policy it may be a different matter when you renew.

[Izb1 in reply to PMRpro]

No, havent got insurance yet x

[Burnley1959 in reply to Izb1]

I’m with nationwide annual policy. I have a debit card so get discount. There will be a surcharge but unsure how much until I contact them.

[PMRpro Ambassador in reply to Burnley1959]

Shouldn't be until the end of the year - though it is rip-off Britain.

[Burnley1959 in reply to Izb1]

Flights only I have a place out there.

[Izb1 in reply to Burnley1959]

My daughter has an apartment in Tenerife so its flights only for me too, but am worried about the cost of insurance now that I have been diagnosed with GCA x

[DorsetLady PMRGCAuk volunteer in reply to Izb1]

My increase was minimal with GCA, they seemed more concerned about osteoarthritis ---particularly if I had it in neck/back - I don't...but could understand the rationale.

[Izb1 in reply to DorsetLady]

Thsnk you, this is helpful x

[SheffieldJane in reply to DorsetLady]

So was mine, maybe because it is relatively unknown.

[Sharitone in reply to Izb1]

Lovely, but don't be tempted by the camel rides. That was my undoing!

[Izb1 in reply to Sharitone]

😜😜😜😜

[Burnley1959 in reply to Sharitone]

Did it get the hump. ( sorry)

[Sharitone in reply to Burnley1959]

😂It did when it caught sight of a little tiny cat and starting bucking about. It got the hump, and I got the bump!

[PMRpro Ambassador in reply to Sharitone]

So more a downfall than undoing ...

[Sharitone in reply to PMRpro]

Even more of a Mighty Crash!Honestly, who in tis country would ever be daft enough to get on an animal 6' at the shoulder without even a hard hat?🙄

[PMRpro Ambassador in reply to Sharitone]

Plenty find similar activities to try without a hard hard - going up a ladder to trim hedges and trees, repair roofs and end up in A&E

[Burnley1959 in reply to PMRpro]

If you want to get ahead get a hat.

[piglette]

As a Professor she will be teaching other people. I hope she teaches them how to read notes!

[Lollybygolly]

A little voice in my head piped up saying “I didn’t get where I am today by reading patients’ notes!”

[Burnley1959 in reply to Lollybygolly]

Classic reggie Perrin

[Pixix]

Good luck! I’d be interested to know who you have got your travel insurance through, if I’m allowed to ask that!ive managed to gain three new medical ‘diseases’ in 2 years, & have been thrown out by two insurance companies! Take care of yourself!

[jinasc in reply to Pixix]

Try your bank............

[Pixix in reply to jinasc]

Thanks! But…They were one of the ones who dumped me! Free for years, then I had to pay a bit when I got fibromyalgia, then a bit more for something else, but we were still happy…then following year they said they would be unable to insure me!

[jinasc in reply to Pixix]

Oh dear my bank has always been my go to place - not that I have needed insurance for quite a while.

[Pixix in reply to jinasc]

It was ours up until ten years ago…then we found a different one, but they ‘ditched’ me after two years! No claims, just didn’t want to insure me! We cancelled our joint annual policy when Covid started, well, didn’t renew, but hope to renew with sane company…but now I have polymyalgia, inflammatory arthritis & essential tremor…all new, I’m looking for others to get a quote, too!! S x