going crazy with side effects to medication

going crazy with side effects to medication

Hi everyone, my I am new and need to ask some questions...I have been on Bisoprolol for several years and it never bother me until I was also put on Amiodarone last week and the Bisoprolol increased from 5mg to 10 mg. of which I take 5 mg. twice daily...couldn't tolerate the amiodarone as I couldn't sleep on it and had to pace the floors all night long...doc told me to drop it after being on it for 8 days....however, I am still very itchy "everywhere" and my lower legs are swollen and have had a rash since I was put on the amiodarone and bisoprolol increase....having stopped the amiodarone I am still extremely itch, rash on face, back, well, basically all over and red patches on my legs...when on the amiodarone I got a Lupus rash on my face....I am getting to a point where I am going to lose it...every night the intense itching starts around mid evening and continues throughout the night...no more pacing but sometimes can't sleep because I am too itchy...had an ablation 12 years ago and afib and palpitations started up again 7 years ago....have had to go to hospital 3 times in last month with heart beat in excess of 200 bpm...I can take almost anything but this itching everywhere and runny itchy nose are driving me mad. Was at cardiologists office a little over a week ago....130 bpm and he put me on amiodarone and doubled the Bisoprolol...even though amiodarone discontinued still having a lot of side effects from increased bisoprolol, even my palms and the bottom of my feet itch and my lower legs are quite swollen and itchy....I stopped taking the night time dose today because I just can't stand these side effects any longer....can anyone relate.

62 Replies

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  • Hi and welcome. There is nothing worse than itch. Sounds like you've pinned this down to the one thing. Hope doc has offered something to calm things down. No experience of this but if you want to try something simple but messy, grate cucumber and apply to the worst bits. Wet flannels take the edge off too. So sorry you have this to put up with. Hope all settles soon.

  • Thank you Bagrat...just awakened with the most incredible shooting pains in my left lower leg...think it must be the diuretic component to Bisoprolol...have never had this before...Lord, give me strength.

  • Hi bisop...left another reply but it did not seem to register,however i had bad rash on legs this was due to the blood thinner riveroxaban...now on Apixaban and thats ok.......hope this helps Bless Mike

  • Hi bisop

    I really feel for you. I had itchy hives all over my body for six months and they almost drove me mad! I was on metoprolol, high dose 100mgs x2 a day and xarelto. My cardio changed my meds completely and I saw an anti-immune specialist and dermatologist but it still took six months and loads of antihistamines every day for it to settle down

    Nobody could tell me if the medication caused the rash but it is worth talking to your doctors about it.

    I know from experience it is a debilitating thing to have.

  • Thank you Jill13, kind of you to respond...I am quite petite and the doc did mention it is very hard to get a dosage of medication for me that I can tolerate....the pains I awakened with in my lower right leg are something new and incredibly painful...think it must be the medication as well. I even skipped last night dose because this stuff is just making me so ill.

  • Heck, I had my bad side effects on bisoprolol from 1.25mg.

    When my heart rate was 136bpm I was told to take 2.5mg that morning and again at night. In the morning my heart rate was down to 37bpm.

  • that's pretty low....I haven't checked my heart rate in days...I know it is okay right now and funny thing, it seems more stable now than ever and I am only taking 5mg daily....supposed to take 10mg but have opted not to do that....if HR increases of course I will up the dosage....but my heart is actually behaving quite well...it is just the rest of my body ;)

  • This is what I used to tell my Dad, if the medicine is not helping you? You do not continue it as prescribed. We know our bodies and how we feel. Dad wld literally think he had to take it because the Dr said to. They once gave him Coreg and he smothered severely on it. I got a call at around midnight and he had made a home made tent over his bed out of a sheet and had a mist going of Vicks to open his airway to breathe. I called the Dr and they discontinued the drug. He was on the lowest dose. I think it is like cooking, start with the lowest amount of salt and add only if you need it. Not much help I know, except study your body and we have to decide what is therapeutic rather than the opposite. Sometimes it seems there are not any good choices really. So very sorry for your agony, listen to your body and communicate with your Dr. Bless you, and hope you find a solition soon.

  • Hi Spoiler...That is why I dropped the evening 5mg. dose of bispropolol as well...cardiologist doesn't know that yet but he will...I think both of those meds could be responsible.

  • Hi Bisop I have had the pains in my legs just like you described

    I also had the itching and the red blotches

    I have been told by a homeopath it is caused by taking Warfarin

  • Hi Kln606172, I have red blotches and a bumpy rash but I am not on Warfarin, I take xerelto. However I have read that xerelto can cause itching too. think these drugs are poison and long for the day I don't have to take them...we'll see. Thank you for your input. Have a good day.

  • I really feel for you, my itching only lasted for about three weeks so I know what you are going through. You must be feeling terrible.I used frozen peas wrapped in a towel on my leg

    I kept it in place for 10 minutes. I could get some sleep after I started doing this.

    I really hope you feel better soon.

  • Thanks Kln606172...the cold peas gives me the shivers already :) I have hypothyroid and I am always cold and I find the Bisoproplo and especially Amiodarone exacerbates the thyroid cold symptoms...but I am desperate and will try anything. Thank you for your suggestion.

  • I feel for you bisop, I cannot relate to your side effects, however, you must go back to your GP and Cardiologist and insist they change the medication. There are other AF meds out there which could change your life. After being on Bisoprolol for so many years you may have become allergic to it, you need to as for both meds to be changed. The rash you describe sounds like Urticaria which could have happened because your immune system is low. I am not a trained medic but have had experience of Urticaria in the past. It is horrendous. I eventually went to a homeopathic Doctor who treated my immune system and I was clear of this in 1 week after suffering for a full year.

    Stand your ground with the Cardiologist and insist they change the meds, don't be afraid to speak up. Good luck

  • Thank you icklebud99, I know I have some kind of autoimmune disease and when the ANA results came back many years ago it was a speckled pattern and believed to probably be a connective tissue disease, but Lupus was suggested on the possibilities list that was sent with the results to the test but never ever showed any signs of it since having the test, now with this I don't know what to think. My cardiologist is an amazing man and very well respected and he said we are getting very low on medication options....have had sotolol, metropolol, flecanide (sp), digoxin, propafenone, and I take xerelto as a thinner....I feel tortured and think I am to go bananas with all this. I even got the Lupus rash on my face last week and no for sure it was from the medication but it has since subsided after dropping the amiodarone...feel like I am going to go mad with all this. Never would have believed or even conceived of the idea this AF medication could cause such incredible issues.

  • Afib antiarrhymic drugs are brutal. I have gone through them all except amiordorone, which my EP said I was too young to take. But, after that was in ER and then hospital they were going to prescribe it, I refused the drug. I had read too many horrible reports on it. I did fabulous on flecainide but failed a stress test, it causef Vtach. Tikosyn caused a cardiac arrest after 2 pills. I am in limbo, I currently since July 11, only take metoprolol 50 mg twice daily and 5 mg warfarin. I have been on those over a year. I have persistent afib, 10 electrical cardio versions. So far too fearful of ablation. Afib has limited options, none of which seem like great choices. Risks are involved.

  • I hear you Spoiler...this really is a difficult place to be...never know what's next. Doc said I really needed to take amiodarone as it is our last choice...it has come to this...oh Lord, this is not what I expected at all, thought I would be travelling an seeing all the sights that I have on the b list :)

  • Bisop, that is exactly what I thought we would be doing, at least 2 vacations a year. We have not gone further than a 7 hour drive from home in 3 years. We used to go out of the country, especially Mexico. I am trying it for now only on rate control and blood thinner, debating ablation. I know technology is constantly improving, if I can only stay out of afib? I am trying very very hard to be more deligent on watching sodium to 1500 mg and staying hydrated. Who knows, maybe I am grasping for straws. I really do not have other health issues, I have always been a type A, perfectionist, staying constantly busy and on the move. It has really been difficult and Dr will give you anything it seems. Best to you, it is good to talk about it to someone that can identify somewhat, altho each is different.

  • Spoiler that is so true...I find the support I have been getting on this site very good for me and also educational just hearing what others have done to alleviate their discomfort and also regarding the drugs we have all taken and the side effects they have brought on us. I have to say I am so happy to be off Amiodarone....it is a killer drug...oh Lord...I would never take it again...I know it is still in my system for awhile and that plus the effects from bisoprolol just enough to make you crazy. I have been on sooo many of these AF drugs and every time I take one now I think I am poisoning myself...my body has rejected every one of them. Just hanging in until I see dr. on the 17th and hopefully, please God, we can get me into a little better shape...I want to enjoy my retirement and get on with my life as I am sure we all do. Have a pleasant evening spoiler...I dread the evenings because come 9 o'clock or so the intense itching will start in earnest and the legs will be swollen, yada, yada..

  • I really feel for you.

    I have had acute Urticaria on numerous occasions that was triggered by the electrodes that we’re attached to me for ablations. This has happened on 3 separate occasions. The first time it lasted 5 months.

    I too was unable to sleep on a number of occasions and only got any respite with Ice cold showers. Not good following an ablation. Like you I stood up all night more than once.

    I was prescribed 5 different antihistamines with no success.

    Only time and removing the trigger worked for me and I was mentally in chaos crying regularly.

    As you cannot identify whether your allergy was to Ameoderone or the increase in Bisoprolol you can only go to your doctor/EP and explain your distress. With AF issues and such a high HR when your heart is in AF obviously your EP will also be anxious to try and control your rhythm issues. This is the dilemma.

    All I can do is tell you that my thoughts are with you and tell you that you must keep repeating ‘All things must pass’

    Pete

  • Thanks Pete, do hope this passes, as things look very bleak to me whilst experiencing all these side effects.

  • Hi

    You poor thing the itching sounds awful.... My husband suffers from this with some over the counter meds and after a GA.

    I have found properly prescribed medical herbs( not Chinese) extremely helpful and effective. If interested please feel free to private message me.

    I do feel for you.

    With good wishes

    Sarah

  • Thank you Sarah, kind of you to respond, you are blessed with my favourite name...I even named a beautiful dog I had Sarah, but that was so long ago.

  • Amiodarone has a long half life and if that's the cause, the effects won't stop immediately you no longer take it. You can notify the MHRA via the Yellow Card scheme.

  • Thank you John-Boy.

  • I do feel so sorry for you, I have had itching but not anything like you describe,. I couldn't tolerate bisoprolol had to stop that, have read of nasty side effects from Amiodorone. I take Flecainide 100mg am and pm and touch wood am Ok at the moment. We all have different types of Afib and what suits one upsets another. I am sure your Cardiologist could try you on different meds, there are lots of other combinations. I took 5 different meds for high BP before I found one that suited me.. Effects ranged from coughing,incontinence, swollen ankles etc.. Don't give up Keep on at the

    Dr's it may even be an allergy to something else. Best Wishes Jo.

  • TenorJK, I have been on pretty well them all and keep having to go to ER for conversion...one time it was beating at 328 bpm...as I said it is so out of control and just seems to keep getting worse...the emergency doctor has gotten to know me and know that electrical conversion doesn't work for some reason...they tried it twice...seems like I have to be infused...the last time I went to ER it 203bpm...they got me into a room immediately and when the doc came in he said I remember you and I know there is no use trying to convert you electronically and ordered the same mediine he had used before...it is bad when they start remembering you. Once they got me into sinus rhythm and I was home the palpitations were back in 2 hours . I am afraid if this keeps up I am going to go into heart failure....that really scares me for strange reason ;)

  • Bisop, my electrical cardio versions did not work while I was on cardizem or betapace. My first successful one was when I took propafanone. That drug worked for 20 months, no problems. Do you have a pacemaker? I have always had a slow heart rate. I have had a pacemaker now for over a year and am now able to take metoprolol, which before so many of the drugs I was unable to take due to my slow heart rate 44-52

  • The electrical conversion attempts did not work and I was on propafanone at that point...needed to have medication infused but the last time it only lasted a couple of hours and then right back into it all over again...my HR at that point had been in the 200's. Just so very tired of all this....feel trapped and hopeless. no, I do not have a pacemaker Spoiler. So very discouraged with this whole deal.

  • Not much to add as there is some really good advice above, but really feel for you.

    If your GP is unable to help then I would be ringing your cardiologist secretary for an urgent appointment with regard to alternative meds - but I do wonder if they will help with the allergic reaction.

    I don’t know if this will work on an allergic reaction but it does ease itching in rashes - get some oatmeal and soak in water, place into an straining cloth - an old sock or pair of tights will do - apply the milky liquid to the rash. Drink plenty of water and if you can - see a Naturapth of some sort to help with something to eliminate and cleanse your system of this anatagonist, whatever it is.

  • There is an Oatmeal based body wash that you can buy in the Aveeno range. Although it is OTC your GP can give you a prescription for it.

  • Aveeno is great. They do one with menthol for itch BUT and could be a big but, there has been some link made betwee menthol and AF ( in cough lozenges) so maybe best avoided. Other Aveeno products really good

  • thanks Bagrat, yes I do use Aveeno moisturizer.

  • Crikey! I've been sucking Halls Menthol sweets for 30 years on a daily basis not for a cough but because I like them

  • I was just googling emollient cream and menthol cos I know it's good and this article popped up.Will see if I can find it again! I know things are absorbed through skin so thought I'd mention. I'm sure I've sucked mentholyptus with no ill effects!!

  • factmed.com/study-MENTHOL-c... apparently 2 people reported it and thus a storm in a teacup?

  • I hear you seaside, have found baking soda baths to be temporarily helpful.

  • My neighbour uses Epsom Salts that she buys in bulk.

    How much baking soda do you use ? I'm refraining from jokey comments of how it may affect you:-)

  • I cup of a tub of tepid water but even getting into tepid water is not so great because I am very cold on this medication as well...not to mention that I am hypothyroid as well...think that thyroid issues can have a lot to do with these arrhythmias as well.

  • should rea one cup to a tub of tepid....yes, I have Epsom salts as well but didn't realize they could relieve itchy skin...just researched it and yes, indeed they can...will add both to the water now...I also take magnesium supplement daily.

  • Perhaps you should follow Cleopatra and bathe in Asses milk :-)

  • That's funny seaside :) perhaps I should.

  • Going to ask when I see him, thank you for the tip.

  • Thank you CDtreamer...what an incredible situation in which I find myself....sometimes I get depressed and figure this can't be my life...is this my Karma...I pray, scream, curse and cry with the side effects...keeping a journal now as I just can't believe the myriad of problems I am having...but have never given up hope...I know that another ablation is being considered but doc said the HR is the big concern right now and must be brought under control. I will prevail :)

  • Hi CDdreamer...I did call the cardiologist and he told to drop the but with the long half life I could go stark raving mad before this all stops...and what is worse the bisoprol might be responsible...this is just one big mess and I am sooo tired f it all...feel like I have aged ten years in two weeks.

  • yes, CDreamer I have notified the cardiologist and was told to drop the amiodarone and knowing it's half life I could be in for a mighty rocky road...I will loose it if this continues...I know he is ordering another ablation but not until he gets the HR setted down that won't happen and it will probably be 6 months or so before they can do it...seems like an eternity to me.

  • Oh Bisop that is such a difficult situation to be in. Some deep breaths. There are other heart rate meds which people do get on with so I do hope that they come up with something. In the meantime I think you could help yourself by continuing to blog here, journal and breathing exercises and Mindfulness to find a calm place. I know just how difficult that can be - but also how important in times of extreme stress.

    Best wishes and keep posting.

  • CDreamer. I have been on Metropolol, sotolol, flecanaide, propafenenone, digoxin, bisoprolol and amiodarone. When he saw me on Sept. 25th is when he started me on amiodarone he told me that I am starting to run out of medication options. So at this point I am taking just Bisoprolol . After being on propafenone and bisoprolol and my heart at 130 bpm when he saw me he was very concerned and that is when he ordered the amiodarone and told me that I really needed this drug and if it made me sick to just try to push through it...well, I tried for 8 days and here I am sitting here and soooo itchy everywhere on my body with rash and getting to my wit's end with it all....I see him again on Oct. 17th and haven't a clue what is going to happen next. I truly think the increased dosage of the bisoprolol is maybe responsible too and that is why I cut the bisoprolol back to the original dosage unbeknownst to the Dr.. At least I don't have to pace all night anymore having stopped the amiodarone and the horrendous headache is gone. Thank God for small mercies.

  • Have you considered going to a dermatologist partly to rule out any other cause or him saying that it is drug induced to make your cardiologist change you to another drug. I had a rash and all over itch when taking enapapril. The dermatologist immediately said drug induced rash are you taking enapapril, stop it and the rash will be gone in three weeks.

    I was taking losartan for several years without side effects but eventually developed an annoying slight all over itch that went when I stopped it. When I mentioned it had stopped my GP said that it must have ben caused by the drugs effect on my liver.

  • Thank you seasider18. I definitely believe this rash and all the other side effects to be medication related as I have reacted to all the others I have taken as well...but with the HR so out of control I obviously have to be on some kind of medication and cardiologist said there he felt amiodarone might be our last resort.

  • Amiodarone is certainly the drug of last resort due to its side effects. I found Bisoprolol to be almost s bad.

  • I am quickly becoming more educated to these anti-arrhythmia drugs...I don't think any of them come without side effects but yes, I agree, amiodarone and bisoprolol are pretty brutal.

  • All I know is that amiodarone takes a long time to get out of,your system so maybe this is the problem. What can your doctor do for the itching. Anti histamines?

  • Thank you BobD, I have been taking anti histamines and for the first time did ultimately get some relief last night but awakened with itch and incredibly shooting pains in my right lower leg this morning...starting to feel despair.

  • I'm afraid I can't offer any helpful information or advice, but I just wanted to say how very sorry I am to hear of your plight. It sounds absolutely awful. Sending cyber hugs.

    Carole

  • Thank you so much CaroleF, just getting support from all you people is comforting...I was feeling so very alone in this.

  • Hi Bisop,

    Sorry to hear about your situation. I think most of us are aware that amoidarone is not a pleasent drug and should only be used according to my knowledge for a short period of time.

    I will come from a different angle. I’m sure you are aware that there are different types of beta blockers, and a change may help you with the side effects of this drug. I myself have used only beta blockers for my conditions, l did try Flecainide once, but it did nothing for me. So l am a rate controlled patient only.

    The trick is to find what your resting heart rate is and adjust your beta blocker so that your heart rate is between 60 to 100 bpm when in AF (normal heart rate for an adult), this may take some time to see what strength of beta blocker you may need. I used this method with the assistance of my GP. The key is to protect your heart from a fast rate.

    I am not medically trained.

    Best Wishes

    Barry

  • Hi Barry and thank you for your reply. I have been through a whole realm of medication over the last several years. It seems that my heart rate has become very difficult to control and is a challenge for my cardiologist...I believe I will be having another ablation but don't know for certain yet. I see my cardiologist again on the 17th and we will take it from there. I know this amiodarone is going to be in my system for a while and have to contend with that, I was only on it for 8 days and the reaction was so severe doc had me drop it. The good thing is that I am not up pacing the floor all night long any more...when I was on it I could not rest....horrible, horrible drug...he was really hoping I could push through the unpleasant side effects but no way...I feel like I have aged 10 years and have dark circles under my eyes from getting just an hour or so sleep a night...it was having a very severe effect on me emotionally as well...we need our sleep to stay healthy and the deprivation was driving me mad. I do believe the bisoprolol was also a culprit in this as he doubled the dose and it is difficult to know at this point which drug was doing what in terms of the side effects. Have a great day Barry and thanks for your input. Regards, Bisop.

  • Hi Bisop,

    I hear what you are saying about your heart rate. Fingers crossed that your cardiologist can get a handle on this.

    Best Wishes

    Barry

  • Thanks Barry, can't wait to get this all resolved or at least in control.

  • I also get terrible leg itch at night (also serious leg swelling if I eat anything the least bit salty). When the itch has me getting out of bed at 3am I resort to an old remedy for poison ivy, that requires a bit of caution. Hot wet compresses will give me several hours of blessed relief. I asked the pharmacist about it and he said heat breaks down histamine in the skin and stops many itches. The trick is to get the water hot enough to sting without scalding yourself and damaging the skin. I usually start with fast dabs with the cloth dipped in hot water and try lengthening the time the skin is in contact with the heat.

  • Hi akenclark, I don't use salt in cooking but I know some products have it and it just can't be avoided. I am vegan so it is not like I am eating bacon or such like...don't eat junk food either (boring) :). Thanks for the tip on the compresses, certainly worth a try...anything is at this point. Have a great day.

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