I was diagnosed with AF 8 months ago. I have a large hiatal hernia which has caused me no heartburn or any problems for years because I eat carefully to avoid them. I went to my GP 10 days ago and told her that I was sure I was becoming anemic. She reluctantly did a blood test after telling me I wasn't anemic. The test shows I'm losing hemoglobin, red blood cells and hematocrit quite quickly and am anemic suddenly within a few weeks time. I'm now 71 yrs old and after a hysterectomy 20 yrs ago I finally stopped having the anemia which had plagued me all my life. I'm quite familiar with it and don't want to live that way again.
I'd been suffering excruciating stomach pain for months even though taking Sotolol with food. Sotolol can cause irritation to the stomach and does with lots of people. I visited my cardiologist 2 days ago to ask him to change me to another pill but he refused.
I'm now on a proton pump inhibitor to help stop or control the bleed but don't want to be on it for long. I'm on Xarelto also for AF.
I need to get off Sotolol. Any advice? I'm on 160 mg per day, half in morning, half in evening but get so much pain. I'm sure I have an ulcer giving me the pain and the bleeding.
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myrlyn
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Did you switch from Xarelto to another pill Mikee69? I want to stop taking it for a few days until I get back to my doctor. Don’t know if I should do that. It’s all a matter of risks for me right now.
So after discussion it was decided that I should stop for 10 days to see what happened. I stomach pain went away. I was then started on Dabigatran, which I had a reaction to, and finally Edoxaban, this suited me much better.
Please do not stop taking any medication without speaking to a professional first, I am only telling you what I did, not suggesting you do the same
Thanks so much for your advice. I need all the help I can get right now.
I’ve had a run of bad luck unfortunately.
Originally when diagnosed I had an incredible cardiologist in a large cardiac care centre with a whole team of professionals. That was 8 months ago.
But at exactly that same time I had a chance to move closer to my family which would mean living in an area with few doctors let alone specialists. I had a 48 hour window in which to make up my mind about the apartment near family.
I told my daughter that the cardiologist was amazing and my moving might be a matter of life or death to me.
She convinced me to move and now I’m in a mess!
I don’t own a car anymore so just to see any doctor I have to rent a car for which I don’t have a lot of money. There is no public transportation where I live.
I’ve rented a car three times in the past week because I realize money won’t help me if I have a major bleed so I need to get this smaller one under control. Just been tough to get some medical help.
I’m so grateful to you for responding. I’ve been feeling pretty alone in this dilemma.
I want to thank you so much for telling me about your experience with Xarelto.
Until then I thought my biggest problem was Sotolol because of the stomach pain it caused when I took it.
I’m essentially on my own to figure this out. My GP is worried for me due to my upper GI bleed but is reluctant to make decisions about my pills.
My cardiologist who I’d only met for about 5 min was a young man who dismissed my bleeding as unimportant and therefore wouldn’t change my pills so I now have to go back to my GP to ask for a referral to a different cardiologist.
I have to make a decision to save my own life. Not trying to be dramatic but that’s the reality.
So I realized the important thing is to stop the bleeding first. Since Xarelto is one of the worst for causing upper GI bleeds I stopped it 2 or 3 days ago.
This morning was the first morning in a long while that I woke up without my stomach hurting.
What a relief. I’m taking rabeprazole which is supposed to heal a gastric bleed in 6 weeks.
Tomorrow I have a blood test which will show how much my hemoglobin etc has dropped in the past 2 weeks again.
I’ll have to rent a car for the 4th time in 2 weeks to get to my doctor to get the referral to a new cardiologist.
Whew!! It’s taking my full effort researching etc to try to stay alive, preferably without having a stroke now.
I was going to the gym 4 or 5 times a week until my bleed. I stopped temporarily because I thought doing cardio while bleeding internally is not the best thing to do.
Still trying as hard as I can but definitely alone in this.
Seconding Mikee’s comments below. I don’t (think I) have your gastric problems but I do take Xarelto and like you I was diagnosed with anaemia that came out of the blue - in September last year blood test ok then this year my blood count was so low I was getting dizzy spells. No other obvious symptoms. I will let you know the outcome when I get through all the tests but I am suspicious of the Xarelto!! Liz
Yes for sure that could be it. The Sotolol had irritated my stomach from the beginning but I’d read about Xarelto being the cause of many upper gastrointestinal bleeds where people had died. My cardiologist who had put me on the meds was worried about a bleed so he gave me a prescription at the same time for rabeprazole, a proton pump inhibitor to protect the lining of my stomach.
I knew that if I took the PPI indefinitely though that my vitamin D and calcium would plummet like they had previously done 5 yrs ago when a clinic had left me on it for about a year. My teeth were chipping and my bone scan came back with alarms that I then had osteopenia quickly.
So I elected not to take the rabeprazole.
My brother said the chances of my getting an upper GI bleed would be the same chance as getting hit by a truck.
Well, I guess that’s now happened.
I want to thank you and Mikee69 for turning my attention to Zarelto.
It was because Sotolol caused me pain that I thought it was the culprit but I knew those two drugs were the perfect combo for a bleed.
Liz, have you stopped taking the Xarelto temporarily? What advice are you getting from your doctor or cardiologist?
I won’t go back to my cardiologist because he was so dismissive the other day when I told him I have a bleed. He said I’d have to drop 30-40 points before it was serious!! Really? He said he’ll see me in 6 months. I could be dead by then.
I really appreciate your help. I don’t want to bleed to death.
So - my GP ordered the original blood test and she told me to stop taking the rivaroxaban immediately and started me on iron tablets. Also referred me urgently to gastric specialist at hospital. Colonoscopy and endoscopy ok apart from a couple of blood vessels that could have bled. Now waiting for results of capsule endoscopy to check upper bowel is ok. I have to say I feel fine and full of energy now. Within a week of stopping the med and taking iron tablets my blood count was climbing and back to normal now.
I will have to see the EP to discuss anti coagulation again once I have the gastric stuff sorted out. I will keep you updated. I worry about the risks of not taking it now but I may see if an alternative med would be better for me.
Maybe you could discuss with your GP if you don’t feel the cardiologist is helping?
Yes, thanks for informing me of this. I’ll call my GP today to ask if I can stop Xarelto just temporarily. I’m waiting for an endoscopy. Hoping it will be soon. Because of the excruciating pain I’ve had in my stomach I’m thinking it’s probably an ulcer but the tests will prove or disprove.
I had horrendous stomach pain starting last December and still haven’t gotten in to have an endoscopy.
I’m thankful for you and Mikee69 for responding to me to help since I’m flailing about on my own. This has come about because I moved last September to a new area.
I stopped my Xarelto on my own.
My stomach pain has alleviated already after just a few days.
I think the only thing left that I can do is to go to a large hospital to emergency and complain of intense stomach pain. They have the equipment there to do some testing.
The small community where I live now doesn’t have any specialists here and has only a very small hospital. I don’t think they do any operations there. They send people to the larger one. I’ve made a mistake by going to the nearest emergency department.
I went once in December and once in April with my pain and then the bleeding.
Both times they try to leave a message with a female surgeon but can’t get ahold of her so they just send me home and suggest I try to call her myself.
That seems crazy to me. Turns out she’d just moved her office and you had to wait for about 20 rings till her answering machine would pick up.
I tell people that the town where I live is like living in a bubble. There’s nothing here as far as healthcare goes.
Anyway, I’m still fighting and I appreciate your sharing your journey so I might get some insight into my own.
We are indeed very fortunate in being registered with a good GP practice- the only good one in our area which we moved to when our previous surgery was taken over by a private company and rapidly deteriorated to the point of being named as one of the worst 10 in England!! It was actually the arrhythmia nurse at the hospital who advised me to move if we could!! I would guess that a larger hospital would probably have more expertise/facilities for people with AF - I have learned from this forum that you can request a referral to your EP or hospital of choice and it may be worth asking this forum for any recommendations in your area? I do hope you can find an EP you can trust, so hard to fight through the NHS system these days I find. Do take care and keep hydrated in this heatwave 💧💧Liz
Your dose seems very high ... l take sotalol ... 80 mg ... 40 am 8 ... and 40 pm 8 ... cardiologist said that more would be too much for my body to handle. I suggest that you get a second opinion.
I started on 40 mg morn and night but after an episode where I went to the hospital an emergency doctor said he thought I needed a higher dosage. He said he would say 60 mg morn and night but since my pills were 80 mg pills ( which I’d split in half) he said double my dosage until I got into see a doctor.
When I asked a cardiologist shortly after that he said oh yeah 80 mg morning and night is an average dosage so he left it at that.
I would rather be on the lowest dosage possible. I don’t have a cardiologist at present and don’t think my GP will change my pills.
I feel stuck with the quick decisions of doctors who don’t know me or my history.
I have asthma and COPD (never smoked) and everything I read says people with any lung disease shouldn’t be on Sotolol.
I find each doctor I see has a different opinion and it feels like they take it very lightly when making decisions that affect my life so much.
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