Carvedilol

[eileenet49]

Hi,

I've had my second (annual) gastroscopy since my Cirrhosis was diagnosed last year in February.

The results were pretty much as the first one, so no change. The doctor who performed this test, different to the first one, suggested that my GP put me on Carvedilol.

GP prescribed it and I have now taken 6.25mg for two weeks. Although he was a bit concerned about the fact that I also have COPD and apparently beta blockers weren't given to people with lung problems. He checked on line and decided to give it a go.

I looked at the list of side effects etc, usually a bad thing to do as many of the things are also things that people might suffer for other reasons.

Anyway, I have been feeling very down over the last few days, although I have been putting this down to my husband's diagnosis (after 2years getting him to have tests) of mixed dementia. Home life is quite difficult at the moment as he begins to realise things he can't now do, like driving, and as with dementia sufferers, I believe, he obsesses on little things. I've had to take over everything for him, medications, what to wear, persuading him to change his clothes etc.

I actually bought a bottle of wine on Thursday and drank nearly all of it. I feel ashamed of myself for that.

What is concerning me most regarding the Carvedilol, or possibly the wine, is yesterday I had a very bad day with what I can only describe as a tight feeling in my tummy with severe aches. Last night was a nightmare. Couldn't get a comfortable position to sleep so up and down all the time. It still hurts now. I've never had ascites but wonder if this is what it is and if it is, is it due to my fall off the wagon or is it due to the medication.

I have an appointment for blood pressure check on Monday but am having serious doubts about continuing with the drug.

Has anybody else experienced this problem and if so, does it get better.

Thank you all again for reading.

[redpoint72]

Hi eileen.You have a lot on your plate..

Don't feel guilty about the wine....

We just start again, and put it behind us.....and push forward.

Ive been on the carvedilol for 4 years now, no issues. They have increased mine recently as my varices don't appear to be improving, and only recently some banded.

Maybe your stomach wasn't happy with the wine🙁.

It wouldn't be expecting that.....and over time your body would of adjusted without alcohol,and made improvements.

Do you feel like your gaining fluid,eg,ascites.....

They weighed me everyday in hospital to see what my weight gain was...... I was quickly filling with fluid. I looked 9 month pregnant,not a good look for a bloke then in his late 40s 😄.

Its really down to you if you wish to continue with carvedilol, but sounds as though your seeing a medic on Monday,and they may well help you,and reassure you.

Finally...don't feel ashamed...ever. we are only human.

Take care love.

Chris

[eileenet49 in reply to redpoint72]

Thank you Chris

It's nice to hear other people struggle some times to, that sounds selfish but I think you know what I mean.

I take diuretics, have done for years, a side effect of the inhalers has been fluid retention. I'm now on two diuretic tablets, Furosemide 40mg and Spironolactone 100mg. But my stomach did/does feel very tight. I'm only seeing the health care assistant on Monday just for the blood pressure test, maybe I'll make an appointment to see a GP or the Nurse Practitioner when I'm there.

I've looked nine months pregnant for a long while 😉 I have been overweight for a long while as well. I have managed to lose 2.5 stones since February, still have a way to go though.

Thank you so much for responding

You take care too

Eileen

[redpoint72 in reply to eileenet49]

Well done eileen on the weight loss,you should be proud of yourself 😀.If it were me I would air on the side of caution, and make an appointment to see your gp or nurse at your surgery.

I know you've only been taking carvedilol for 2 weeks, but it shouldn't be stopped abruptly....so I would have a word..

I wish you well and your husband.

My best..

Chris

[eileenet49 in reply to redpoint72]

Thank you Chris. I think I will.

[AnxiousPete]

So sorry to hear of your ongoing troubles, it must be very hard dealing with your own health as well as your husband's.

Beta blockers can cause respiratory symptoms as I experienced when I was prescribed them for high blood pressure so they moved me onto other antihypertensives.

What grade of varices do you have ? My consultant says for grade 1 varices he does not recommend any medication at all.

I hope you get the answers you need as soon as possible.

Pete

[eileenet49 in reply to AnxiousPete]

Thank you Pete.

I'm not sure what grade of varices I have but there were apparently three small ones last year and still three small ones this year. I haven't had any banding or any bleeds. So I don't think they were particularly bad.

When I had the last gastroscopy I had to drive myself and didn't want to leave hubby at home too long on his own, hospital an hours drive from here, so I didn't have sedation (which I had planned to do).

I struggled badly with gagging and wonder if this sent my blood pressure soaring. If they took that to mean I needed beta blockers I would be disappointed.

I'm feeling much better to day, I do think that maybe it was the wine that caused such a severe reaction. One thing it has done has stopped me feeling complacent and I am now committed to an alcohol free life.

Best wishes to you

Eileen

[AnxiousPete in reply to eileenet49]

Sounds like grade 1 but I would ask if it is usual for your consultant to prescribe beta blockers for such small varices. AsxI said mine doesn't consider it necessary. Glad you feel a bit better now.

[Missmanor2]

Hi just wanted to say l don't know enough about liver disease to comment as l am newly diagnosed myself with itHowever my darling husband of fifty years had Alzheimers and l know how hard that journey is thinking for two ; deciding for two and dealing with the confusion and pain you see every moment off your daily life. Dementia doesn't just happen to a person it happens to a family please be kind to yourself .l was well when my darling was ill and it was incredibly hard can't imagine being ill yourself and doing it.

[eileenet49 in reply to Missmanor2]

Thank you so much. It's good to speak to people who understand. There are so many things available to help but the person with dementia needs to agree to it. For instance we've been told of hotels and holiday companies that cater for people with dementia and their carers together, but hubby just doesn't want to go on holiday.

It does make life more difficult but it's wonderful to hear from people who care and understand.

Best wishes to you

Eileen

[Missmanor2]

Every journey is different but l tried the hotel breaks hubby became more confused away from home and it wasn't good for me being around others on the journey for me going on holiday with good friends who understood and could help was great l could hire a cottage and agree with the other couple that alternate days they could go off on their own l covered expenses so they where happy to do it and l have lovely memories

[eileenet49 in reply to Missmanor2]

I was wondering about going to places where all are dementia sufferers and carers, not sure I could cope with that. Sounds mean but I would imagine there will be people further down the line, and I don't think I want to see that yet.

I booked a lovely seafront apartment in June on the North Norfolk coast for a week, part of my husbands life really. We went with his sister and brother in law and my sister. They were great but he just got more and more confused and kept asking when we were going home. We left after 3 nights.

I think if I book something again it will just be the two of us. Somewhere quiet and pretty. He's easier when there aren't others around. He does get on well with my sister and she comes to stay every 5 or 6 weeks. This helps me and hubby is comfortable with her.

We've been lucky to travel a lot since we got married in 2005, both were widowed the year before. Mostly RV trips in the US. If you ask him where he'd like to go that's the only thing he comes up with, that's not possible now. Here members less of the individual trips now, I didn't expect that as I always assumed it would just be very close memories that are lost.

How lovely that you were still able to make precious memories with you husband.

Thank you

Eileen

[Missmanor2 in reply to eileenet49]

Do what makes it easier for you please be kind to yourself it's a hard roadx

[Treble2023]

Wow - I'm not surprised you needed a drink. You're having a tough time of it.

There are occasions I'll have a cider or a few and I know it's poisoness to me, but for a few hours I can swich off from the consequences and enjoy a drink. I feel guilty because I have one sneakily and my other half would be worried sick.

It's the equation of die living or to live afraid to die that I battle with. I've been on 12.5mg of Carvedilol a day for over 12 months now and I am unaware of any side effects.

Be careful with yourself. I know how my Dad has suffered since taking fu time care of my Mum who had dementia. He has never recovered pyschologicaly or physically.`

Don't be afraid to ask for help.

Take care

Paul

[eileenet49 in reply to Treble2023]

Thank you Paul.

I think hearing that all my bloods, scans and gastroscopy were unchanged, in fact the bloods had improved kind of lulled me into a false sense of security.

I went to my daughters wedding in May and had some wine there, it was a bit like kicking off the habit again, but not in great amounts until Thursday when I bought the bottle of wine. We'd/I'd just been told that it doesn't look as if my husband can have any medication for dementia as his ECG showed some issues. Very disappointing.

I wouldnt have to hide drinking from my husband as he doesn't seem to know that I shouldn't be. I do understand what you mean about the equation. I sometimes think i'll just forget about the consequences and go for it but then I think of my daughter who would be so distressed, especially as now, at 54, she has finally found happiness.

I finally got some sleep last night and my tummy feels almost normal now, so it's probably not the carvedilol.

We are having a meeting with some one from the post diagnosis person from the memory clinic on the 3rd. She seems to be saying that there is help and she can arrange it.

I'm really sad to hear about your mum and dad and hope that he can recover a bit.

Best wishes

Eileen

[BritishLiverTrust8 Moderator British Liver Trust]

Dear eileenet49

We suggest talking this through with your own doctor or health care professional in the first instance.

If you would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust