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
FlipDover_Aust Susanne_M_UK
Posted
Wow, you do have a lot going on! Isn't it great when you finally find a Dr that is willing to tackle everything and not just focus on one of the 'easy' things, leaving you to live with all the other crap that is making your life miserable?
Susanne_M_UK FlipDover_Aust
Posted
She's a star!
My task is how to keep the now 4 consultants up to date with what each one is doing! They are based at 2 different hospitals and don't use the same IT systems, so can't share records.
stella-dk Susanne_M_UK
Posted
Hi Susanne. Yes it´s good to hear from you. But i´m sorry to hear all the things you are going through. I also have a hard time at the moment with pancreatitis ( probably from the pred ), upper respiratory problems and a broken foot. I´m also hoarse on and off most of the time lately ... I hope it is from the pred ...but I need to se a specialist ....yet another. However - I try to keep the hope up and look forward to " hygge" at christmas. I think it is very positive if people in UK and elsewhere also like to hygge, but i realise that it can be just a word to sell something....
I wish you all the best and a speedy recovery. Hugs Stella.
Susanne_M_UK stella-dk
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Hi Stella. Oh, you have a lot going on too! Good luck with your appointment. Let us know how it goes.
Glædelig Jul! 🎄🎄🎄
stella-dk Susanne_M_UK
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thank you....I will do that.....og glædelig jul til dig også.
MrsO-UK_Surrey Susanne_M_UK
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Hi Susanne, I'm just popping in to say I'm thinking of you especially today whilst undergoing your bronchoscopy, and wishing you luck for a happy outcome. Likewise for the liver biopsy on Monday - you're certainly being kept busy by the NHS but it's comforting to know that they are continuing to explore all avenues and not leaving any stone unturned in their investigations and monitoring of you. And in the midst of all this you are still coming to our Chertsey Christmas get-together next week - what a fighter you are, and it's working because you certainly seemed on the up at our last meeting - keep it up. Looking forward to seeing you and all the other lovely members on Tuesday.
EileenH MrsO-UK_Surrey
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Susanne_M_UK MrsO-UK_Surrey
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Thank you so much. I'm now resting on the sofa at home.
The bronchoscopy revealed that I have bronchiectasis, a disease of the bronchial tubes, where the airways become widened and can't clear themselves of mucus and become infected. The bacteria then damages the airways further. There are several causes for it and the consultant will be looking at the biopsy sample to see if he can find the cause. Having a compromised immune system hasn't helped.
I'll hear further about treatment, which is likely to be physiotherapy to clear my lungs, inhaler, breathing exercises and making sure chest infections are kept well under control. Back tomorrow for bloods and some medicine Doctor has decided to give me now.
Some of the symptoms are severe tiredness and inability to concentrate, and shortness of breath, - that's me!
I'm glad they've found the cause!
macas02 Susanne_M_UK
Posted
Maryx
EileenH Susanne_M_UK
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Looking forward to hearing what they suggest - because OH has bronchiectasis too! Copy shortness of breath and frequent chest infections - can't say I've noticed the others!
Yup - knowing why is half the battle!
Susanne_M_UK EileenH
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Oh, really! Well have to compare notes! 😁
I'll let you know what treatment they come up with, but the consultant mentioned physiotherapy, breathing exercises and inhaler. I'm picking up some medicine at the hospital tomorrow, I think it's an expectorant, the nurse called me just as I got home, so not totally sure.
Follow up at hospital on 3 January, but assume treatment will be set in motion before then.
He's writing to my GP who, I think, will organise the physio.
Susanne_M_UK macas02
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MrsO-UK_Surrey Susanne_M_UK
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Susanne_M_UK
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Just a quick update. Bronchiectasis: I had a bad chest infection leading up to Christmas. I was given a double dose of antibiotics, but when I went back to the GP 2 weeks later, still feeling unwell, she wouldn't give me any more antibiotics as she thought I had now caught a virus. I literally staggered through Christmas. Still, visitors have left and I'm sleeping/relaxing as much as I need. I'm due to see the respiratory Doctor the day after tomorrow. It will be the first follow up after the bronchoscopy. My GP said they may suggest low dose antibiotics to be taken regularly during the winter months.
My liver biopsy was OK. Just a fatty liver.
I now have a date for my spinal biopsy at St George's. It's on 5 January, but I go in the evening before for bloods and to make sure I'm fasting. I then stay in the day after the biopsy for observation. My haematologist originally told me I would be in and out in a day and that it would be a local anaesthetic, but I'm now wondering if it will be a general. Of course, when I called to try to find out, no one was there as it was between Christmas and NY. I've worn Google out in the meantime, not a good idea!
Wish me luck! I'm a little nervous about the whole thing.
EileenH Susanne_M_UK
Posted
Good luck - Thursday isn't long! My wedding anniversary - hope we'll be well enough to go for the meal we haven't made over Christmas due to viral infections/chesty coughs. So I'll raise a glass to your recovery!
Looking forward to hearing the verdict about abx. Our experience is that DAvid needs abx for a long time after a bad chest "do".
MrsO-UK_Surrey Susanne_M_UK
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Oh dear, Susanne, I bet you can't wait for Thursday and, hopefully, the right treatment to get you back on track. There is a really infectious chest virus doing the rounds at the moment - I succumbed plus a throat infection at the same time but, of course, a virus for you with your broncioectasis diagnosis probably makes things ten times worse. Surely, if the problem needs more antibiotics, then the sooner the better -my hubby, Mike, had 5 lots of antibiotics some months ago for what turned out to be pneumonia and pleurisy.
At least a relief to hear nothing too serious with the liver.
Yes, the very best of luck for both Thursday and for the 5th, and then hopefully your New Year will eventually get off to a better start.
linda17563 EileenH
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I like Susanne, had pneumonia 2 weeks before Christmas and was on 2 high dose antibiotics....feeling ok now fingers crossed, but I`m (as I posted before) dropping very quickly 1mg per week from 10mg to 5mg (now at 8mg after 2 weeks) but my question is.....I have persistant toilets visits for a few hours after waking!, about 8 times.(wears me out!)....could this be due to the quick drop in pred, or the antibiotics that I took....
Hope you and OH feel better soon....
linda17563 Susanne_M_UK
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EileenH linda17563
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Honestly don't know Linda - that is a new one on me. Most people complain of needing to go frequently during the night when they are on pred. However - better the excess fluid is down the loo than hanging around your ankles!!!
Are you managing OK otherwise on the lower dose?
linda17563 EileenH
Posted
I am drained...the above dosen`t help obviously....but tomorrow go to 8mg. (drop 1mg every Tuesday)
Have trawled the net and put in my problem, it seems if you drop fast this can happen...and it suggests immodium. Why people take laxatives to loose weight...well........
Hope it stops soon, because I don`t see the rheumie till 7th Feb, have blood test week before when down to 5mg....but honestly thought I would be much worse than this.....so fingers crossed, if I stayed like this as far as fatigue and pain are concerned I will cope ok, have felt worse than this on higher pred....Thanks for asking.....
EileenH linda17563
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Oh, right, sorry. No - never heard anyone say that before but then, very few reduce that fast. Hope it doesn't get any worse - contact your GP if it does though. And be sure to keep your fluid levels up - you'll be losing a lot like that.
No - I don't get why anyone would want to lose weight that way either!
Susanne_M_UK linda17563
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Linda, I don't know when this problem started, but don't forget that antibiotics can make you nauseous and give you dioarreah, or at least loose bowel movements. The ones I got recently had that effect on me and my pharmacist recommended taking them half an hour after food with a full glass of water and staying upright for a reasonable period afterwards. So if you've been taking the last dose of the day just before you go to bed, on a relatively empty stomach, and then lying down to sleep, it could be the cause.
linda17563 Susanne_M_UK
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Will drink plenty as Eileen has recommended.....
Thanks again.....
Anhaga linda17563
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And restore your gut microbiome. Either get some recommended probiotics from the pharmacy, or eat natural yoghurt and, slowly if you're not used to them, introduce other fermented foods, like kefir and the various fermented veggies.
linda17563 Anhaga
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EileenH linda17563
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My moderated post was about the probiotic Lodger uses - worked a minor miracle for her. If you want to know I'll pm you with the name.
linda17563 EileenH
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Anhaga linda17563
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I haven't tried it myself but apparently kombucha is good. It's a kind of fermented tea.
Susanne_M_UK linda17563
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EileenH Susanne_M_UK
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It's a miracle to get Greek yoghurt in a supermarket here (the town up the road is the EU capital of yoghurt production) - kefir remains a distant dream I suspect!!!!
Anhaga EileenH
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Greek yoghurt is better in some ways than regular yoghurt, and not so good in others. More protein, lower carbs, more fat, less calcium....
Anhaga
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Not tried making it myself.
EileenH Anhaga
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I only use Greek yoghurt - you don't need sugar or flavouring! Makes a brilliant topping for moussaka, egg beaten into a small tub. OH has discovered even he likes aubergine - another dish to add to the "will both eat" list"
linda17563 Susanne_M_UK
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FlipDover_Aust Anhaga
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I drink kombucha - tried making it myself and decided it's not worth the effort since I can afford to buy it ready made and tasting much better!
It's a great wine replacement - not too sweet and has that slight fermented taste.