Hello.This is now my forth week on Warfarin dosage now 6mgs daily no significant change in INR from 1.5...I am not feeling well at all so much so have cancelled my trip to Spain tomorrow, Feeling groggy all the time and these past two days have so much pain in my right leg that it is making me feel sickly....
Still having hearing problems with very disturbing tinnitus....The crawling feeling over my skull which I have mentioned previously is still there however over time I associate with by heart being sometimes so slow I can hardly feel my pulse...
The Cardiologist refuses to acknowledged the medication has these side affects and refuses to refer me a EP as I am not considering an ablation...
I wonder how it would be if I came off all medication. Flecainide bistropol asprin and warfarin...
Any suggestions what I can do I am sick and tired of feeling sick and tired and my health has really deteriorated this last month.Regards C
Hello Maitha and thank you for replying i know also that you are not to good at the moment and I have been thinking of you and following your progress...
I have never had such pain before and I quite cant ascertain where it originates from..
The good days seems to be less frequent now Maitha I am self employed and finding it increasingly difficult...
This darn AF has a lot to answer for.... I was on Warfarin but had to have it changed as side effects were bad and am now on a newer drug Rivaroxaban which seems much better. Ask to have your anti coag changed.... I know when you feel so grotty it's easier to let it go and imagine yourself chucking tablets into the bin . Been there felt that ....
But... AF is here & we have to get some control back so chin up and demand if necessary to see an EP..... it is your right.
Hi Nikki..I have only just managed to get the medics to put me on Warfarin as I was told I was not a high risk and Aspirin was adequate...A colleague who came with me observed that the Cardiologist thought I was quite 'Tricky' but this is not the case.I had quite some knowledge which I had acquired over the months from this site..
Another factor is, AF had only been seen once when I was admitted to hospital over 12 months ago and the three 24 hr monitors worn at intervals the following 12 months had shown no irregularity...
I requested to be referred to an EP but was met with a negative response the reason being there was nothing to show him and also I had stated i was not looking at having an Ablation at this stage...I feel I am stuck between the devil and the deep blue sea...Take Care C
I agree with the other responses you've had. Flech & Bisoprolol can have side effects.... checking your B.P. for week seems a good idea and will give doctor the proof of what you say. best of luck
Some great advice from Maitha, monitor your pulse and BP for a week, and if it is as low as you think then get back to your cardio and get the drugs reduced, it is still most likely that the side effects are from the Flecainade and Bisoprolol and not the warfarin, as these are not noted side effects for warfarin at all. (But are for fleainade and bisoprolol)
You could try a different Anti-Cosg but it will depend on your local health authority, by no means all of them will prescribe as warfarin is so much cheaper for them.
I am so sorry you have cancelled a trip due to this, and really feel for you, in January I cancelled a trip to the Phillipines, which was the right decision, but I am still missing it to be honest, make sure that your re-book another time to have a trip to look forward to
Hi Ian,I asked about this the last time I saw the Cardiologist ...His response was the dose I am on is very low 2.5 Bisoprolol and 50 mg.Flecainade the latter being twice daily.How dos this dosage compare to others with PAF....Sorry you've missed a voyage also...I just couldn't do it travelling to Northern Spain and feeling so ......I don't know what the word for it is!!!! C
I understand where the cardio is coming from, but if you are having a low heart rate then the dosage may still be too high. Flecainide can be prescribed as "pill in the pocket" to be taken if you have an attack, and Bisoprolol (which is the likely guilty party here) can be taken at 1.25mg or changed for another beta or calcium channel blocker. There are a few available.
I personally really struggled with Bisoprolol, and after making a bit of a fuss was switched to Diltiazem, and the difference was chalk and cheese.
I do think Maitha's idea is a good one, get some statistics to go back with even if only one weeks data at least you will see if your heart rate and BP need this amount of control.
You cannot and should not have to put up with these side effects so it will be a little bit of pfaffing around to get them changed to ones that work. Of course, the main thing is to ensure that your A Fib is controlled, but not at the expense of having to cancel holidays because of how you feel.
Hi Ian,I have made a mental note of what you have said and I am going to put it to my GP that we revaluate or have a re-think about this medication...Thank you for your continuing support...C
I can't replace warfarin with any new drugs yet since none of them completely safe with mechanical valves as I have one already
As you see Caromia , Beancounter agreed with me , I think your dose of Flecainade and bisoprolol should be adjusted or replaced , pls monitor your pulse and BP for some time and discuss with your doctor the record
I was on 2.5 bisoprolol and Flecainade for a month and it cause me chess tightness and nearly got faint and very up normal till the doctor agree with me and stopped it
Please be positive , try paracetamol for your body aches , and my doctor usually prescribe to me for the bad days some drugs for anxiety and relaxation such as Alprazolam but not for long term for sure
It helps really , I accept long back that I'm unique person and I should tailor my plans and schedules as per my health situation ( I have been through heart failure in 2000 and two open heart surgeries in addition to other major one not related to heart plus Af and migraine ) but I still believe I'm very lucky and blessed to be alive after all that and able to be a mother of five kids and currently working woman thank God
My last try was ablation to fix AF , hope it will work
I mentioned all the above just to let you know that if God will is to live for long you will even you have all the illness in the world , so follow above advise and pray to God to keep you safe and give you the strength to manage
Small advise it may help you for the next few days to drink a lot of fluids
Hope you will get better soon, happy to hear from you anytime
Hi again Maitha,I have an appointment on Thursday with my GP and I am going to explain that i am struggling..He knows I am a strong person but I am weakening at the moment...
Like yourself I am a business woman albeit a small business and both on a professional and personal level no stranger to death or illness but I am on my knees with this at the moment.. Maitha I have my faith also and believe in a power that's far far greater than myself and Its great to hear from you also and even if I don't write I follow everyone's progress daily with great interest.
Will be in touch soon and tomorrow is another day...C..PS.I was taught how to pray many many moons ago by a Monk at Ampleforth Abbey before then I had only been playing at it...lol...
Hi Caromia - Have you just started with these pains since taking warfarin?
Since my second ablation 9 weeks ago the only tablet I'm taking at the moment is warfarin and it appears to be making every joint in my body ache. I always take it lunch time, as if I take it at night it upsets my digestive system - sore in stomach right up to my throat.
Like you I've been thinking 'shall I stop taking it', but the truth is I'm afraid to. My GP who I trust totally is on holiday this week, so I'm doing my best to hang on until he gets back next Monday. I want to ask him about trying one of the newer anticoagulants. You are taking quite a concoction of drugs, so it's quite difficult to know which one could be making you feel so drained.
Hi Jean.I have been taking the Warfarin for 4 weeks now with no change to the INR the dosage has doubled in those 4 weeks and I am now on 6mgs daily...
I have noticed this past weeks a stinging sensation in my transverse colon area which wakes me up in the early hrs of the morning...
Also unexplained pain in my joints wrists,knees,tibia and also the scapulars. I don't believe this is muscular as I have located the origin and insertion of the muscle the pain seems to be in the bone and not the muscle...
I was depleted of energy before the Warfarin but now the Warfarin in my opinion has exacerbated my condition...I didn't think I could feel any worse but now I am finding it difficult to cope with every day life...
I do not look ill so this confuses people also and when going for blood test of collecting prescription I am always double checked for my age...I am so sorry to be such a winger,,,I have an appointment with my GP on Thursday he is great but I don't think truly understands ....
I am just preparing a list of questions for my GP for Thursday.With regards to the Flecainide being taken as a pill in the pocket as ian and others have referred to, Would you know what dosage it is?...Would it be 50 mgs or more?
Pains are no easier this morning I have just taken Ibuprofen as seems Paracetamol is contra -indicated with AF according to my DR.
This is a full time job Jean trying to stay healthy and knowledgeable about this condition lol
When the heart isn't fluttering then something else crops up...
I am going to ask for the Bisprolol to be reduced or substituted with a calcium blocker and the flecainide to be used as a pill in the pocket.I am not sure about the Warfarin...Is it the Warfarin that is causing the joint pain which didn't creep up slowly but just appeared over night on Sunday morning...
Lets see what happens he may be reluctant to go go against what the Cardiologist and hospital have prescribed...Will be intouch.Take care...C
Don't use Ibrufin ( all this drug family ) when you are on Warfarin , it may cause bleeding in stomach, you will find that note in warfarin leaflet
I never hear that paracetamol may trigger AF since I'm taking it for migraine attacks occasionally
Hope your appointment will be good , please don't forget to request Vitamin D blood test , really most of body aches these days are due to lack of this vitamin
Oh Maitha not something else to add to my list lol.The Dr gave me these when i was first diagnosed with AF and the medication was giving me severe migraines.as he explained I could not take paracetamol with AF..
I hope you are in a good place this morning and every day you are stronger.C.....
That is very strange as I was told that paracetamol was the only pain killer I was allowed to take and have regularly had this whilst in hospital to dull any post ablation pain. It is ibuprophen which is a no no if you are on warfarin,not paracetamol.
Hi Caromia - I was put on Flecainide after my ablation but didn't get on with it so can't really say what dosage people take as a 'pill in the pocket'. To be honest I never really gave it a fair trial - such a fuss pot! If anything is wrong with me I always blame the tablets I'm taking. Hate them!!! Like Maitha I thought we AF people should only take paracetamol.
I wondered this morning whether to talk to another GP about my body aches, but have decided I will do my best to wait until my doctor, who knows me well, returns from holiday on Monday. I looked online about the alternatives to warfarin, but don't like the sound of them either. Now that I've had my ablation I may well just stop taking a blood thinner. I'm afraid I'm a law unto myself and will take any consequences from doing this as I must. I would have been happy to continue with it, but not with the way it's making me feel right now.
Hi Jean,I am a law unto myself as well and just used to making my own decisions so this situation I am in dosnt sit well with me at all but guess we all have to be humbled some time or other...I dont believe I am having the best care but it is up to me to change that without having to step on to many toes...Difficult as I say things as they are or how I perceive it to be and I expect the same back...My shoulders are hurting now and so damn tired. but the hearts not fluttering which i suppose is a bonus.Hope your feeling well today or least slightly....If only it were as simple as a paracetamol washed down with a glass of wine....!!! Regards,.
Hi Caromia - If you read my response to Winterlass. I am going to pursue the thyroid theory. It may be worth you having yours checked to - you have nothing to lose. My heart appears to be o.k. now too, just this awful ache/soreness in the whole of my body. I find I have energy in the mornings, but if I do a long walk then I can't do anything other that sit exhausted all afternoon. Sitting makes my body ache worse. If I hold the phone to my ear for long, it is agony for me to put that arm down when I finish the call. Are you the same?
If I were you, I would definitely be asking for a full thyroid panel and vitamin D blood tests! I remember feeling very similar just before I was diagnosed with Hypothyroidism/ Autoimmune Thyroiditis & Very low Vitamin D. I hope you feel better soon. X
Thank you Winterlass..As i spend many hours outdoors and also in Spain Vit D depletion was not something I had considered but I shall certainly bring it to my GP's attention whether he will adress this I am doubtful but I shall certainly pursue....Thank You.C
Hi Winterlass - My thyroid has been checked and I am borderline hypothyroid, possibly caused by taking amiodarone. Last time I had my thyroid checked, which was a few weeks ago, I asked if it could be a full one and was told that the lab in this area won't do that. My GP is back from holiday on Monday and I am going to put that question re full test to him. I too am an outdoors person so it's unlikely to be vitamin D with me. You've given me the push I need to get my thyroid fully checked. Thank you.
Hello Jean...My list for GP is getting longer by the minute...Of all the many symptoms of AF or side effects of med {I don't know how to differentiate between the two] the most debilitating are the loud hissing inside my head which has greatly affected my hearing so much so that I use an Aid...The constant tiredness.Like yourself any physical exertion depletes me,walking up a slight incline causes breathlessness but strangely enough swimming is ok but still the tiredness..A now these pains in my limbs so that has put pay to swimming this week....
As I have been on medication since my first attack over a year ago i am now wondering what it would be like without any medication at all,would I still be having these flutters...I now find out its Paracetamol and not the ibuprofen that I should be taking...
I would welcome some respite from thinking so much about myself and my difficulties with coping with this...But not believing that my medication is not suiting dosnt help the issue..I keep saying to myself there are people much worse off than you and have far more suffering but unfortunately my Hailo has slipped as I am still feeling sorry for myself and licking my wounds metaphorically speaking....
Well we will have plodding on try and have a good day..All The best...C
I had a terrible time getting diagnosed, this country (UK) is way behind in terms of understanding thyroid issues/treatment. Our reference range is so wide compared to other countries, the reference range for TSH (thyroid stimulating hormone) is usually either 0.3 - 4.6 or 0.35 - 5.50 depending on the lab and particular test kit they use, in America the range is 0.3 - 3.0, same thyroid conditions, same tests, so you can be raging hypothyroid in America but borderline in this country! Also in this country the Doctors like to take a sit, wait and watch approach, meaning, they probably will wait until your TSH is over 10.0 before they treat you for your thyroid condition! I suggest you join one of the many very good thyroid pages on facebook, make yourself an informed patient, arguing your case will be easier if they can't baffle you with bs. This one is a friendly knowledgeable group but there are many more
Good morning Jean.I am sorry this doesn't mean anything to me but that said was never any good at Algebra !!! I would think Ian or Bob will know..I have a Dr's appointment shortly will catch up later.C
A TSH of 11.4 is well over the range of 0.3 -5.50, if you go over 5.0 you are without doubt hypothyroid! The range I mentioned is one of the widest in the world. Ask the Doctor, how can you be hypothyroid in one country and be treated for it if your levels go over 3.0, yet have to suffer in the UK with a TSH level as high as 11.4! The same lab test kit's are used world wide, with only a very small difference in reference ranges between them, maybe 0.5 of a mu/L. TSH is thyroid stimulating hormone, made by the pituitary gland in your brain to send a message to your thyroid to produce more thyroid hormone, namely T4, T3 and calcitonin. If your TSH goes high, which your's has, it means that your thyroid isn't producing enough thyroid hormone for your bodies needs and your pituitary gland is sending a signal for your thyroid to produce more. The reference range (the range that your blood levels should be within) will/should tell your Doctor that you are hypothyroid or not depending on where your levels are. Not much use if they just ignore the fact that you are hypothyroid! Your T4 should be higher than it is, if you were a healthy person, the reference range for T4 is around 11.0 - 23.0, so yours at 12.7 is fairly low in that range and that could mean that you have not got enough T4 in your system to convert to T3 (T3 is what your cells need to keep you alive!) Low T3 has been proven to cause fibromyalgia type symptoms in hypothyroid patients, meaning lots and lots of PAIN!!! Don't take anymore nonsense from this Doctor sweetheart, he is keeping you ill! By the way I would also suggest that you get him to do Tpo & TgAB blood tests to rule out autoimmune attacks on your thyroid X
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