Last November I've been told that I have some (not much) ascites and was prescribed Spironolactone 100mg one a day, I took the tablet, about 4 or 5 days later, my hands became dark or purple and swelled, my palms became red and still after 4 months they are the same ( before using this tablets I never had red or dark palms). I carried on taking this tablet as I wanted to get rid of ascites, but everyday I got more side effects, Itching was horrible ( before taking this tablet I didn't have any itching at all). This medicine affected every part of my body. I had over 15 side effects. I became very unwell. Actually I should have stopped it much sooner, but unfortunately I didn't. After 2.5 months taking this medicine I saw one of the liver consultant or registrar, I discussed the side effects, she was surprised! She prescribed Furosemide 20mg.
I gave my body the rest for two weeks then started Furosemide 20mg one a day. I didn't have any side effect for one week. But in the last few days I got very bad palpitation and became very unwell. I'm guessing that it's side effect of Furosemide. I decided not to take it, yesterday and today I didn't take it and feel a bit better. Now I'm very upset, don't know what to do? how can I get rid of the fluid. I don't want to go through draining way, it's so difficult and risky.
I don't know if I can take the Furosemide every other day instead of every day, does it work in this way? What is the alternative? Is there any other way to get rid of fluid, I really need your advice and help. Is anyone had such a bad reactions to Furosemide? I need your experience and advice please.
Has anyone who is or was on Spironolactone, their hands and palms became dark or purple? what to do to get rid of it?
I'm invited for covid-19 vaccine, in general I have so much allergy to different medication, does anyone know which vaccine is more suitable for people with lots of allergy and weak immune system ?Oxford one or Pfizer? I really appreciate your help. Many thanks
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Rose2000
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Hi Rose! I was very quickly taken off both diuretics as they were causing kidney problems! My only other option was to have the drains! The team that did them were fantastic and I went in as a day patient! It is a bit uncomfortable having the drain inserted, but not painful! If was such a relief to get rid of the fluid! Usually between 6/7 litres🙏 The benefits for me completely outweighed the discomfort of the ascites 👍🙏
Hi Lam, Thank you so much for your reply, it makes me more relax about draining the ascites. Last time when I saw the registrar in hospital she wasn't talking very positively about the draining, she mentioned that there is risk of infection also risk of damaging liver. That made me so scared. If you go through draining is there any possibility that ascites come back? or it's just once you go through it?
Everyone is different and I think some people can have a drain and have diuretics that keep it under control! However I had an AKI as me and the diuretics just didn’t work, so regular draining was necessary, pre transplant! Infection is a risk, but I was always looked after really well and it was never a problem! As I said everyone is different!
If you/they decide you need to have a drain and you have any questions then just ask me👍
Thank you very much, I will contact you when I reached there.
Hi, I would say it depended how bad your ascites is as to whether you should persist with diuretics - not sure how bad it is. I was on diuretics - only reaction I got was that furosemide made me go really light headed when I stood up from sitting/crouching down to point of having to hold onto something whilst it subsided. I stopped the diuretics and found that I was ok without them.
When I was first diagnosed I had terrible ascites and had got to a point where I couldn't breathe because I had fluid in my lungs. TIPS shunt cured it instantly but over time I had problems with shunt blocking and ascites came back which was improved with shunt unblocked but not completely cured. I took diuretics when the shunt blocked and continued to take after the shunt cleared although mainly was struggling with my legs swelling not my stomach. I have found over time the ascites and swelling in legs has reduced and I stopped the diuretics. Sometimes it builds up during the day but generally it reduces overnight when I lie down in bed. Speak to your doctors about the best diuretic and best dose for you and as someone else has said, drains aren't the worst thing ever. They don't particularly hurt, the relief afterwards is amazing but there is risks of infection and they tend to leak a bit after being removed. Hope wherever you get to it works for you.
PS I had Pfizer vaccination on Tuesday - no reaction (I have allergies to x-ray contrast dyes and have had a reaction to something in a multivitamin tablet although not identified which ingredient).
Hi Julie, thank you so much for your reply, it's really helpful when people reply. My ascites is medium, but I can see my tummy is a bit big. When first time I took Spironolactone, it worked too fast and I lost my weight about 5 kg in the first week, my tummy became smaller, but as I mentioned in above the side effects was terrible and not tolerable. The second one Furosemide tablet affected my heart and stopped it. I will contact my liver consultant and get his idea.Thank you for writing about your vaccine, that can help. In the end I appreciate your effort for explaining your case. It's really good to know and learn. So helpful. Thanks
Hi Rose, I should have said I only stopped the diuretics with support from my liver doctor - they said they were ok with me taking it up to the prescribed dose if needed but equally if I didn't need it was better not taking it. I hated the dizziness with furosemide and decided I could cope with a bit of a bloated stomach at times as it was preferable. If the ascites builds up again it's probably likely it is a problem with my shunt and something which I'd speak to them about immediately. Like you I waited for next appointments in the past rather than getting in touch immediately which ultimately made it harder to unblock my shunt when it was blocked. You're better trying to sort things out as early as you can - I've only ever had consultants give me a telling off for not getting in touch not for being a nuisance and asking them for help. Hope you get it sorted out soon 🙂
Thank you very much Julie, You are very right, I should have contacted my liver consultant much earlier, not waiting for my next appointment. I just thought may be it's not nice to bother them. But I have learnt my lesson this time, will be in touch with my actual consultant tomorrow. All the best. 🙂
Ok Rose, dont leave it this time. Go to ypur gp or speak to your consultant or their secretary, today if you can. They will advise on the next steps and best course of action. You don't have to make these decisions yourself but best not to delay things. Good luck.
Hi kristian, thank you very much for your reply. I did a big mistake to stay on horrible Spironolactone tablets for 2.5 months. I'm always very careful with my medication and do lots of research, but for this matter I don't know why I closed my eyes and took them and tolerated the side effects for too long. Anyway I will contact my liver specialist this time. Thanks again
Good morning Rose, Kristian is right, do not leave it. The decisions about your medication need to be taken by your medical team. If you start to alter the dose or stop, it will make it much more difficult for them to work out what is going on. With regard to your vaccination - the staff willgo through a very thourough questionnaire about your history/allergies etc. if they think it is best for you to have one vaccination rather than another they will tell you, they dont want you to have any problems with the vaccination any more than you do.
Good after noon Trust 5, Thank you very much, I supposed I was panicked about ascites as I never thought I might get it one day. So after prescribing the Spironolactone I just took it and ignored all the bad side effects.I contacted my GP to discuss about this matter, she said that I should contact my liver specialist he will decide what to do, so will do that. Thanks for explanation regarding vaccines, I'm sure now they will consider our health problems. thank you
I had ascites this time last year,they drained 10 litres,was a little bit uncomfortable,but was out by 6pm. Was put Spiro 100mg,but caused gynoclomastia (man boobs) so came off them,fluid never came back. I guess everyone is different. Certainly reading on here peoples livers are all different(obviously) and respond in different ways. Fingers crossed you will get it sorted.👍😊
Hi Dean, thank you very much for your reply. I'm so glad for you that fluid didn't come back, that is really a great news. can I ask you how long were you on Spiro 100? Did you get rid of the side effect after you came off of it? In my case my hands are still dark red and palms are red too and don't come back to the normal colour which makes me worried.
Hey Rose,I was on SPIRO for about 3 months and the side affects starting going after about 2 weeks or so. I had lots of anxiety around my diagnoses,in my case I would go straight to my consultant. I would list all of my concerns in an email and send it to his secretary. He would often phone me,save me waiting for letters which can take a while and not great when you sat at home in a lockdown worrying. In my case he used to say stop worrying thousands of people have what you have and don’t even know it(I know I’ve been lucky in catching mine in time),so now I’m alcohol free,eat well,work out and live a positive full life!!😊
Hi Dean, thank you very much. Today I tried to contact my consultant. I left message, I'm sure they will get back to me. So happy for you, enjoy your life. 😊😊
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