Woodbridge Tea and Chat

[Soosie56]

Our next meeting is on Thursday 9th January 2020

Dobbies Garden Centre 2.00pm

Grundisburgh Road

Woodbridge

SuffolkIP13 6HX

Come along and join us!

[Saxsoprano]

I would love to have joined you but sadly am not free on the 9th. Do you meet regularly? If so please keep me in the loop.

Penny

P.s. moderators please note an imminent change of email address to ... Thanks.

[PMRpro Ambassador in reply to Saxsoprano]

I am removing your email address from the post. This is social media and putting your email out in public is a very risky action!

It isn't needed by the moderators - we operate within the forum only, using the Chat facility to message you directly.

[Soosie56 in reply to Saxsoprano]

So sorry you can't make it, Penny. We usually meet every two months on the first Thursday of that month, so next meeting will be at the beginning of March.

I live near Woodbridge so if you'd like to meet for coffee/tea and a chat with me before March just let me know.

All best wishes

Sue

[Saxsoprano in reply to Soosie56]

Hi Sue, Yes I would love to meet for tea and a chat before the next meeting in March. Sorry for this late reply but had some problems logging on. I live in Saxmundham, so it should be easy to meet up.

Regards, Penny

[Soosie56 in reply to Saxsoprano]

Hello Penny.

Bit busy this week but is Wed 29th am or pm any good for you? Perhaps Snape Maltings? Can do other days.

Hope you're doing ok.

Sue

[Saxsoprano in reply to Soosie56]

Wednesday 29th not good but any time Friday 31st would be great and Snape Maltings a good idea.

I'm doing OK except for exhaustion as my adrenals don't want to kick in.

[Soosie56 in reply to Saxsoprano]

31st Fri is fine. 10.30 any good for coffee in downstairs cafe?

[Saxsoprano in reply to Soosie56]

10.30 in downstairs cafe - at the entrance to the Maltings site? I am medium height with grey hair and a fringe! Xx Penny

[Soosie56 in reply to Saxsoprano]

Look forward to seeing you soon x

[Saxsoprano in reply to Soosie56]

Soozie I was looking forward to meeting you today but I am most unwell and had a fainting/sickness and diarrhoea attack early this morning so will have to cancel. This is tied up with whatever happened to me on Wednesday which wasn't a heart attack but may have been a pulmonary embolism and I've no idea where this came from. I'm back at the hospital this afternoon to have the scan results explained as there was no qualified doctor present to explain them yesterday. They don't think this is GCA related.

I look forward to meeting on some other date.

Penny

[PMRpro Ambassador in reply to Saxsoprano]

IF it turns out to be a PE - it could very well be associated with the GCA:

ncbi.nlm.nih.gov/pmc/articl...

which mentions a Swedish study that showed the risk of PE is almost doubled in GCA patients. This is greatest in the first year after diagnosis.

[Saxsoprano in reply to PMRpro]

Thanks for this. I feel much better knowing that it may be a GCA complication and not an unrelated health matter as I have been health conscious for years.

[Saxsoprano in reply to PMRpro]

Hi PMRpro

The paper was very interesting so I gave a copy to the doctor who explained that I have indeed PE. According to the notes VQ scan showed " 2 unmatched perfusion defects at right base. Appearances are of multiple pulmonary emboli" I have been given Apixaban blood thinners to sort this out which I hope happens quickly as I'm in a fair amount of discomfort

[Soosie56 in reply to Saxsoprano]

Hope you're feeling better soon.

[Saxsoprano in reply to Soosie56]

Thanks - so do I! !

[PMRpro Ambassador in reply to Saxsoprano]

Are you on any other medication besides pred? I'm not telling you this because I want to scare you but to be sure you don't end up in an even bigger mess:

My husband was on that last year but had severe bleeding problems because it MUST NOT be mixed with one of his cardiac drugs and no-one noticed/said so. The blood level was 10x the correct one. I am on Pradaxa and an anti-arrythmic: Pradaxa must be taken first and the other drug 1 -2 hours later or the blood level of the Pradaxa is about 50% higher than it should be which over time would mount up too as the baseline level would rise steadily.

Luckily it is the head of the lab's special subject, he has all the testing kits, so we were both checked carefully - he also established I needed the lower dose of Pradaxa, not the one I had been given, 110mg instead of 150mg. OH has switched back to warfarin as it is easier to reverse with vit K (which doesn't work with the NOACs) and he now has his own INR testing kit - at great expense! Could have had a holiday ...

I had noticed that I was bruising more after several weeks - so had stretched out the 12 hours between doses a few times to let the blood level fall a bit which helped and have done that a few times. But I am really glad he decided to look more closely and get proper figures. As well as having a much shorter halflife, there is also an antidote for Pradaxa.

If you notice you are bruising more than before - report it and don't be fobbed off.

[Saxsoprano in reply to PMRpro]

Thank you for this warning. I am on no other drugs but my reducing prednisolone which is now a steady 3mg for a week or so before I taper to 2 1/2. I read the accompanying leaflet and noted the warnings about bleeding. I'll be sure to take them seriously.

Xx

[Soosie56 in reply to Saxsoprano]

Oh poor you. Thinking of you. Let me know how you get on and if there is anything I can do.

All best wishes. Sue