Update
Posted , 9 users are following.
I haven't been posting much lately, too busy keeping my appointment diary up to date! I'm having so many investigations at the moment that there isn't time for much else.
Following my PET scan in May, my rheumy decided that I needed to see a haematologist to check on inflammation on my spine spotted on the PET scan. I'm currently waiting for appointment letter for a further full body scan.
Next is a bronchoscopy to check my lungs, there is still crackling and something there since pneumonia during August. My voice has also got more and more hoarse and tight, in addition to being quite out of breath. That's scheduled for 1 December. They will also check for TB. I had a skin test, but had no reaction, no doubt masked by the pred.
I found out that if you have latent TB, methotrexate can activate it. Of course, I had 6 months of Methotrexate until I could no longer cope with the side effects.
Then I saw my gastroenterologist for my 6 months check up. She had warned me before that she might request a liver biopsy, and she said she now wanted this to go ahead. Although my liver enzymes are mostly good, one enzyme is not and she wants to have this done, as she says that there are too many uncertainties about my health and once you have an autoimmune illness, you could get liver immune disease. My liver is already fatty. Its also a good time to do it, as I've managed to taper the pred down to 15mg, so it won't mask any symptoms as much as it would do on a higher dose. This is scheduled for 5 December.
Also coming up mid December is a scan on a nodule on my lung.
That's it at the moment, I think!
I've managed to taper to 15mg pred, which is the lowest I've been since GCA started 2 years ago. I don't feel particularly better, I'm still very fatigued and rest/sleep a lot. I've still got a horrible round face and am still very overweight, a bit of a vicious circle though, I'm too exhausted to exercise or walk any distance, so am not using up many calories.
I manage to get out for my weekly art group and the odd brief outing to the shops or lunch with friends, but really, life is not very exciting right now.
And...I'm going to the Chertsey Support Group Christmas do on 6 December (the day after my liver biopsy, so may hobble in!) and really looking forward to that.
0 likes, 116 replies
EileenH Susanne_M_UK
Posted
Good to hear from you - and aren't you getting value for money from the NHS! Hope all the scans show something to account for the problems but not anything unpleasant that is complicated to fix.
My husband was informed in the early spring he had had TB at some point! It was probably present when he had his cancer (not lung cancer) because one of the house officiers said she thought the white specks on the x-ray looked suspicious but in the excitement/concern about the tumour it was never mentioned again. We assume he caught it when he was choir director for the American Army church choirs when we lived in Germany, it was rife amongst the squaddies. We both used to have massive reactions to the TB skin test, his was worse/better (however you want to look at it!) than mine and he used it as a model for inflammation in his work.
Still - look after yourself though I'm sure you are getting a bit bored now aren't you? Wish I could come with you to the Chertsey Christmas "do"!!!!
Susanne_M_UK EileenH
Posted
Hi Eileen. I certainly am getting my money's worth and can't fault my rheumy, she is determined to find out why I'm feeling so unwell all the time.
Yes, I get bored, or rather, frustrated at not being able to do what I'd like to do within reason. Everything is an effort and comes with a price to pay. Still, if I continue doing well with the taper, things will hopefully get better.
artfingers Susanne_M_UK
Posted
That sounds like you have a lot on your plate. Prayers and please keep us posted of the results. I hope they are able to keep you going and don't find anything too distressing. I hate the round face and chubbyness too. It is so not pleasant. I have to drag myself to the gym most days but usually manage a reclining bike ride there which is easy on the knees. I do NOT look like my picture on the left anymore, alas. I do hope to get back there some day. Hang in there. Hugs.
Susanne_M_UK artfingers
Posted
Artfingers, thank you for your kind words. Yes, the hamster face really is quite awful. I look in the mirror and think "where did I go?".
I'll let you all know how things go.
PS Happy Thanksgiving
EileenH Susanne_M_UK
Posted
You need a session with my 16 year old granddaughter - she is on high dose pred for life-threatening asthma. Bless her, she went from a size 8 (UK size) and sharing her mum's clothes to an 18 and you can imagine what the boys at school said. She just developed her own new style and gets on with it which, for her age, is so inspiring. She says "Embrace the face oma"!
You didn't go anywhere - you are still in there and one day the cuddly bits will go away and you'll get your cheekbones back!
Susanne_M_UK EileenH
Posted
When i feel ugly and sorry for myself, I always try to remember that there are so many people with life threatening or terminal illnesses.
EileenH Susanne_M_UK
Posted
She is such a pretty girl too - and this morning she sent me a picture of herself from snapchat using the Mrs Doubtfire filter informing me she looks just like me!
About 7 or 8 months ago she decided to go veggie and a bit later the whole hog and is now vegan (bit born-again about it too). She has lost a fair bit of pred weight - but her asthma is far better, not perfect but MUCH better. She had a dairy allergy as a baby - she was on soy milk between weaning from the breast until she was about 2 which dealt with her eczema. Then she was fine for 4 or 5 years. So I'm not going to object - she is fairly well informed so I'm sure she is eating all she needs.
Susanne_M_UK EileenH
Posted
I'm veggie, not gone the whole way to vegan, cheese is my downfall!
I'm sure your granddaughter is very well read up on vegan nutrition.
EileenH Susanne_M_UK
Posted
I have a friend in Leigh in Essex - has been vegan for YEARS - cooks meat for her bloke though. The food she makes is brilliant. I had a fantastic vegan meal at a veggie restaurant in Edinburgh - really worth going to. David Bann's I think it's called.
Susanne_M_UK EileenH
Posted
If I'm ever in Edinburgh...
macas02 Susanne_M_UK
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Oh yes I also have a cyst on my back which is infected so I am having my fair share of antibiotics until the cyst can be removed.But...I am now on 2 mg of pred and I am losing the BIG ROUND FACE !!! so thats a plus.
Good luck with the tests and keep smiling
Maryx
Susanne_M_UK macas02
Posted
Mary, thank you. Sounds like you've had a hard time too, but good that you're down to 2mg, - and lost "the face"!
constance.de Susanne_M_UK
Posted
You poor thing! I wondered where you had got to. So sorry you're having soooooo many problems. I felt sorry for myself when I had such a time with internal bleeding recently. The 'scopies ' - all 5 of them - really made me weak but, of course, the loss of blood was the worst.
I'm much improved now, thank goodnesss. Stopped feeling sorry for myself and able to walk, go shopping, etc again. Looking forward to Christmas but am jealous of you being able to go to the Chertsey Christmas do. I would like to have a really traditional English Christmas. The German Xmas markets are great, but their family Christmases are much more 'sober' than ours.
Take care and indulge yourself over advent.
Regards fr Constance.
Susanne_M_UK constance.de
Posted
Hi Constance. Yes, I'm embarrassingly aware that I haven't been in email contact with you for a while.
I'm glad you're on the mend, it sounded horrific.
As you know, I'm Danish, so I'm used to the European Christmases. Just to punish myself with extra work, we do a little of both, celebrating both Christmas Eve and Christmas Day and my mum is over here from Denmark this Christmas, so I'll definitely have to make Christmas Eve special as well.
It seems to me that you and Eileen should get on a plane together and join us for jollifications at Chertsey! 😃
EileenH Susanne_M_UK
Posted
constance.de Susanne_M_UK
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How lovely for you to have your Mum with you for Christmas. It must be a great worry to her that you are so under the weather at the moment. Have a great time..
We are off for a night in a Castle for the 24th. 25th invited to our daughter's (also over-nighting), intend doing it all English on the 26th.😀🍷🍾🍸
Susanne_M_UK EileenH
Posted
Yes, hygge seems to be the buzzword right now. I'm a little cynical though, as it seems to be a quick and easy way of publishing a coffee table book. I think at least 5 books on hygge were published in the UK this autumn.
Susanne_M_UK constance.de
Posted
Yes, my mum does worry and it's not always easy to explain to her what's going on.
Christmas in a Castle! Magical.
EileenH Susanne_M_UK
Posted
According to an article I read in the Grauniad yesterday it is WAY more than that! 9 - and a 10th parody! And they don't really get it - at least that is the impression I get! But then, I wouldn't expect the UK to "get" any of the mainland Europe concepts...
Susanne_M_UK EileenH
Posted
Quick moneymaking opportunity!
I do believe we think alike Eileen! 😐
constance.de Susanne_M_UK
Posted
The statistics say the people in Denmark are "happier" "more contented" than the rest of Europe. Would you say this is true? Is that what hygge is all about? If so, we have a lot to learn in England and Germany😉
Susanne_M_UK constance.de
Posted
I spent about half an hour typing replies, and then the posts disappeared! I think the site is a bit unstable.
Anyway, Denmark is a very small, all country (about 5.5M people) and they have space, a very good infrastructure, both in terms of social benefits and pleasing surroundings, paid for in very high taxes. They strongly believe that your surroundings mean better lives. We all do, of course, but to create such a society in a large country like the UK or Germany would be impossible. So, yes, the Danes are probably happier with their lot.
The concept of hygge has always been in the Danish way of life, and really, it's not particularly unusual. It generally means to have a nice, relaxing time with friends or family, involving, quite often, candles, wine, tea etc.
EileenH Susanne_M_UK
Posted
To a great extent I think that aspect has survived, in rural southern Germany especially, and here in Italy until relatively recently. In some places it is still very much there. Candles and wine were always an important part of an evening spent with friends and it always worked there - but when I tried taking it back to the UK with me. it didn't seem to. Maybe I wasn't Germanised enough.
"They strongly believe that your surroundings mean better lives." - here too I think. And people seem very much more satisfied with what they have - many don't even go away on holiday, they staycation. After all, when millions choose to come here on their holidays there must be something special about the place! They work hard all winter for the ski season, December to Easter, and usually will have a job somewhere for the high summer season, mid-June to mid-September. They may or may not look for work for the other months - as long as there is enough money to pay the bills many don't bother about more. When you ask them how things are going the response is almost always "Ich bin zufrieden" - which to me says so much more than just "I'm content".
Duden (the definitive grammar lexicon) thinks the same: "innerlich ausgeglichen zu sein und nichts anderes zu verlangen, als man hat" - "inwardly balanced and desirous of nothing more than one has"
Susanne_M_UK EileenH
Posted
Really interesting, Eileen and I love the "inwardly balanced....".
I'm half way there, - being desirous of nothing more than I have. 😊
EileenH Susanne_M_UK
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Susanne_M_UK EileenH
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Better health was part of my lack of "inwardly balanced"!
EileenH Susanne_M_UK
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Oh right - I thought is was your heart's desire, like me