Help Please.

[Brummiegal]

I posted about my dash to hospital ad my Night in Resus with regard to a rapid heart beat - that was back in July of this year. Since then I have been on the medication I was given at the hospital - no one has reviewed or altered the medication or its dosage.

I take a Beta Blocker and 2 doses of Apixaban daily.

I saw a consultant in the hospital before I was discharged - he said he wanted me to take a blood thinner to prevent heart attack and stroke, he said Warfarin had been the drug to take but now there were several more modern drugs to take that did the same job but without all the side effects, He said it was of course patient choice and would I wish to take the new drug or Warfarin - having just spent a very traumatic night with a heart rate at 200 I was more than willing to follow his recommendation., I left with him saying he was going to call me in for an Echo Cardiogram and when he had the results we would discuss how we were going to proceed regarding treatment and drugs. 6 weeks later I got called in for the Echo - 3 weeks later after I had heard nothing I contacted my Drs surgery to see if they could find out what was going on - I was told they had that week received a report from the hospital - I made an appointment to go in and see the Dr. I went to the surgery was told that the hospital report required no further visits - that I did not have Heart Failure or heart desease and to keep taking the meds I was given at the hspital.

Since I started taking these medications I have never felt so ill - I suffer with constant tiredness, no energy, lethargy, stomach problems, headaches, I am light headed, have tingling in my face on a regular basis and haved no interest in doing most of anything.

I have done some investigation on line and founf that I am one of thousands in the same boat - I have seen a GP again ( I won't say my GP because you never see the same one twice) to be told they don't advise that I change my medication and that there is always a transitional period of time when taking new medications.

Can someone help me please - I don't know what to do - I want off this Blood thinner - I don't have a serious heart condition - surely as long as I take the Beta Blocker and look after my diet etc there is no need for a Blood thinner.

Can I go to the Drs and demand to have a referral to a heart consultant - I want to talk to someone who is specialised in the heart not a General practitioner.

Any Advice please - I would be so grateful I am going out of my mind with the worry and frustration.

Thank You

Babsx

[KEN65]

Hi, Sorry to hear of your problems and I agree it is a nightmare with meds, I was taking the blood thinner drug called Ticagrelor and apart from cuts that bleed more than norm it was only bruises that appeared but other wise I found that okay, now run my course and off it, the one that did me was the heart drug Bisoprolol not nice with side effects that did calm down after a month or so but so glad now to be off it, and to find out on here that a better drug and not so bad was a calcium based one, but on finding out it was time to come off this as well which has been hard, I would suggest talking to your pharmacist with meds as they understand a lot more than most gp's in my books, mine was very helpful in advising me to then talk to the doc on meds, and the one thing I found so helpful was her telling me that I did not need to stay on certain drugs on knowing my case history whereas the doc would have !, make you wonder, however we are all different so best I can offer you and wish you good luck, lots of deep breathing to calm the HB and BP I have found.

[Brummiegal in reply to KEN65]

Hi KEN65, thank you so much for replying to my cry for help - I have been feeling isolated, and knowing that someone has taken these drugs and has survived and is now off them helps.

I also take Bisoprolol so its a double whammy really - I will go and have the bloods done on Monday and then go and see the Pharmacist on my way home and see if he can spare some time.

My Elder Brother had a 3 way bypass - open heart surgery and didn't have the problems I am having with the meds for my AF - it seems a ludicrous situation - the GPs at my surgery just don't seem to care at all - as long as they have prescribed the correct drug for your condition they can't see the problem and poo poo the subject of side effects.

I hope I manage to find a resolution to this, another drug that does the jib without making me feel like death warmed up most of the time - because I will be honest with you, if this is the way I am going to feel for the rest of my life - then I would rather not bother.

Babs x

[anke123 in reply to Brummiegal]

Sorry you are having all these problems. I have found the pharmacist often knows more about the medication than the GP does, at our practise they employ there own pharmacist and you can phone or book appointments. He sorted some of my meds out. Do hope you feel better soon. Anke

[Brummiegal in reply to anke123]

Hi Anke,

I hope I do too - I am due to be spending Christmas with my Son and his Girl in their new flat in Exeter and I don't want to be feeling the way I do now.

I will feed back how I get on with the Pharmacist - fingers crossed for some useful information.

Babs x

[laura_dropstitch Heart Star in reply to Brummiegal]

If you've been on these medications for a while and are still suffering such extreme side effects, it sounds as though they do need to be reviewed. I agree - speak to your pharmacist and see what they say. They might even give you some info you can take back to your GP so you can state your case more firmly.

The whole medication thing is hard, isn't it? The cause and start date of my heart condition remains a mystery, but it seems like I was probably living with it unknowingly for a long time prior to diagnosis. The way I feel now, there's no way I could be unaware something was wrong. The escalation of symptoms may be because my heart deteriorated due to the strain of pregnancy (I was pregnant when I was diagnosed) but I do often wonder how much of my feeling crap can be attributed to the medicines I now take. I've done a lot of soul searching about it because I really miss the energy I used to have. For me, though, longevity is my main priority because I have a small child. And the medications and doses I'm on now have been tweaked many times over the years so my tiredness etc is now undesirable but no longer unbearable.

Good luck with it all x

[Brummiegal in reply to laura_dropstitch]

Thank you Laura - I wish you Good Health and longevity - here's to seeing your young family grown and enjoying the joy that is Grandchildren.

Much love to you

Babsx

[Hullensian]

Good Morning, Oh dear, you are expressing all the concerns you will find in my posts about Apixaban. I am most concerned about the fact that there is no antidote and the only person who has said they would take it if they had Atrial Fibrillation is my pharmacist - neither the doctor nor the cardiologist would say whether or not they would take it. My pharmacist is a font of information about medication, so I would recommend same advice that others have already posted - have a word with him/her. I have been taking it since May along with a beta-blocker and it is as others are posting - the side effects of the drugs are as bad as the symptoms, but what does one do? If you don't take the drugs you are at risk of stroke/heart attack and whilst one may survive them, in what condition would one be? My husband had a stent fitted some years ago and he keeps assuring me that it may well take a year before my system gets used to the drugs and I stop having so many side effect (tiredness/aching limbs/unable to sleep on a night at times) as that is the time it took him. Also, and you may already have one and be aware of it, you need to wear an "Alert" wristband or necklace inscribed with your drugs, especially Apixaban and you need to ensure you have the card supplied in the packaging of the drug with you at all times as medics need to know. My beta-blocker also warns to inform doctors, medics and hospitals. I got mine from The ID Band company via the internet as they have so much choice. Thre are lots of other companies, of course. Hopefully, your worrying will reduce.

[Brummiegal in reply to Hullensian]

Hello Hullension,

Thank you for your reply and support. With what you say it seems as though we are suffering with the same side effects - I do hope there is a 'settling in' period with these meds, and that the side effects will subside one day - but as you say if there is no alternative what can you do, except hope that they come up with an antidote pretty swiftly and that in the meantime we all stay well.

Here's to us - and everyone else suffering from nedication side effects - feeling much better very soon.

Sending Love,

Babs x

[Twobells]

Maybe Bhf nurses could help on what to do. I just asked for an apoint ment via my GP to see Cardiologist. Side affects where awful, he stopped them all for one month, then has started me on different drugs one at a time. GP only works on his recommendations. I'm on an ace inhibitor very low dose and a cholesterol lowering drug which because I can't tolerate statins. I couldn't tolerate aspirin, but I think (my personal opinion) the drugs that are first prescribed are the cheapest as many of us start of on them regardless.

[Brummiegal in reply to Twobells]

Hello Twobells,

Thank you for responding, I really do appreciate it. I am hoping to get a referral to the heart clinic, so I can ask my questions and get some reassurance - but that will take months even if I am successful - in the meantime I am off to see the Pharmacist tomorrow - so fingers crossed.

I wish you Good Health and a happy life.

Regards,

Babs x

[Ethel13]

Hi .Brummiegal,

I’m so sorry to hear all the problems you are having. I think the advice given by others to talk with a good pharmacist is a great idea.

I am on apixaban and have no problem with those, however I did find the betablockers caused me to feel much worse, I told my cardiologist and he had no problem with my decision to stop taking them. I have prolapsed mitral and tricuspid valves and permanent AFib, the apixaban is a must to prevent strokes but the betablockers were primarily for relieving the symptoms. I have surgery at the end of this month.

Every case is different and each of us have to decide what is best for us based on the information and advice given to us.

I do hope you manage to get sound advice that leads to you feeling more comfortable.

All the best,

Dory ❤️💕❣️

[Brummiegal in reply to Ethel13]

Hello Dory,

Many thanks for your response - I too hope that I find some answers and some relief from this endless tiredness and lack of energy.

All the very best for your operation, I wish you good health and long life.

Babs

x

[Ethel13 in reply to Brummiegal]

Thank you Babs x💕

[Hidden]

Hi Babs - sorry to hear about all the symptoms you've been having, which sound more like the beta blocker is the culprit rather than your apixaban. From reading the thread it sounds like you're taking these medications because of atrial fibrillation, which means that if you don't take apixaban (or another drug from this family such as dabigatran or rivaroxaban) your risk of having a stroke is about 4-5 times higher than the general population. Drugs such as aspirin, clopidogrel and ticagrelor, which I can see are mentioned in the thread, are not effective in reducing your stroke risk.

It seems like you've probably already spoken to your pharmacist about your medications and/or your GP so I hope there's a new plan in place. It's common for medications to continue without review for about a year unless you report side effects or your condition changes or worsens. A cardiology review might not be indicated at this point as your GP should be able to tweak your beta blockers or perhaps try prescribing a different medication that can help keep your heart rate under control.

I hope this helps,

Chris

[Brummiegal in reply to Hidden]

Hello Chris,

Thank you so much for your response, I really do appreciate it. I have spoken to the GPs at surgery on a couple of occasions since my diagnosis, but unfortunately I have always left them disappointed.

It seems they are loathe to touch the prescription that I was given at the hospital, and always say that it takes time for the body to adjust to the new medications and to persevere. Rightly or wrongly I feel that I am being fobbed off and leave them feeling isolated and ignored.

I am so happy I registered with this site, the support I have received from fellow members and administration is wonderful - I feel more knowledgeable and confident that - if not at the moment, in the near future - I will feel secure that my medication is right for me.

For newly diagnosed patients it is a double whammy when you suddenly find yourself with a health problem that is scary, in a whole new world of restrictions, and on top of all that the medics that you turn to for support at your local surgery treat your diagnosis as commonplace and virtually send you away with a bag of new medication and tell you to get on with it - but I have no doubt you have heard this story before.

With my medication I have swung from blaming the Beta Blocker for my side effects to the Blood thinner - and then back again - I still don't know which of the two is the culprit to be honest. I do realise that I have to take the Apixaban, or another of the same group of medications, and I am very grateful for the protection it gives me, but I do worry about the side effects and what could go wrong if I had a serious bleed, but I will have to come to terms with it and get on with my life, as others do on this site.

My main concern is my lack of energy and this constant tirednesss and not being able to get a straight answer out of the GP's - I am wondering whether to split my Beta blocker and take half in the morning and half in the evening? as I still havn't managed to get some time with my local pharmacist I am unsure as to what to do - hopefully tomorrow will bring an answer as I rang and asked if he could spare me 10 mins.

I am also due to go for bloods at the surgery tomorrow with relation to my taking Apixaban so the results from those will hopefully get rid of some of my worries too - in relation to that Chris, why are they asking me to note down my weight - is weight gain/loss another side effect?.

Thank you again for your support, I feel so much better having this forum to turn - it's marvellous.

Babs x

[Hidden in reply to Brummiegal]

Hi Babs - I'm so glad you've found the support on here helpful and that you're rapidly becoming an expert in your condition! Reading into what you're saying it seems as though you're at a turning point with your GP surgery, and if relationships have broken down then it may be time to consider switching practices.

Once you're referred back to your GP from cardiology, the expectation is that the GP will then manage your care. Having your medicines reviewed and tweaked is a vital part of this. If a GP is unsure about what to prescribe then they can refer to NICE guidelines and also get in touch with the cardiologist to ask their advice.

Usually, the first port of call with the symptoms you're having would be to either reduce the dose of bisoprolol or split it, as you've suggested. You should let the GP know you're doing this and then see how you feel - it might be that having half the dose twice a day suits you better.

Serious bleeds as a result of medications like apixaban and warfarin are very rare, and the hospitals are well equipped to deal with these situations. All you can do is take care of yourself!

[Brummiegal in reply to Hidden]

Bless you Chris .

Babs x