Round, like a circle in a spiral 🎼 - AF Association

AF Association
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Round, like a circle in a spiral 🎼

Frances123
Frances123

I have joint pain due to hormone therapy medication I have to take for breast cancer. The main effect is mildly in the wrists, ankle and knees. Recently though my back and hip became quite painful. Wednesday I had a full body bone scan to make sure it wasn’t metastatic BC. I was convinced it would be arthritis. Nurse rang this morning after MDT and scan was completely clear which is good news. It looks now it’s another joy that the medication is sharing with me.

Told nurse I didn’t want to keep taking paracetamol if I can help it. She said quite a few women got relief from cod liver or fish oil or glucosamine. Sadly these look a no no for me as it can cause Ectopics or AF episodes in some people. Not sure I want to risk it?

Does anyone know of any joint ease that is kind to Afib please. I’m fine with ibuprofen gel but can’t take it orally.

Frances xxx

20 Replies
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May I be so bold to suggest perhaps you gently dance/exercise to "Windmills of your Mind" - it is sure to do something to your joints, if not, it will certainly take your mind off of your imminent problems. The original (I think) by Noel Harrison in "The Thomas Crown Affair" - please excuse me possibly being seen to be flippant.

Frances123
Frances123
in reply to john6

Yes it was Noel Harrison and I loved it. Agreed exercise is good but would still like some “help” rather than paracetamol. I’ve got another 3 years of this and I ain’t getting any younger 🤣. 67 just before Christmas.

Thanks

Frances xxx

Hello Frances, sorry to hear you are struggling a bit. You need to double check with your doctor or pharmacist, but I think you should be OK with codeine based pain killers, but too much can cause constipation. At least you must be comforted to have had good news about the scan......

Frances123
Frances123
in reply to FlapJack

Oh I am flapjack. Part of me doesn’t mind taking painkillers and find ordinary paracetamol works in the main. I was hoping to find something more natural if I could rather than a drug. I take co codamol if it’s being a bit of a nuisance but ohhhhh yes the downside is a bit of a strain!

Frances xxx

FlapJack
FlapJack
in reply to Frances123

Literally.....😒

Hi Frances - I finished my 5 years course of medication for breast cancer this June. I have had arthritis for many years and have had had additional pain during the last five years due to tablets - or so I thought, since coming off them in June I have seen no improvement in my joint pain. I had two Bone scans during the five years and both of these were clear.

I was 67 when breast cancer and AF were diagnosed.

For joint pain my GP gives me Solpadol (same as co-codamol)30mg/500mg dosage and I do take omega oil capsules,I do not think omega oil capsules are a problem for AF, some say they are best not taken if you are on a anticoagulant, I have asked several medical people on this and it seems some say its okay others no, I have taken them for many years for the arthritis, if I do not take them I have a lot more pain and stiffness so I have decided to carry on taking them with a anticoagulant. I do agree with others that gentle exercise is important and I also visit my osteopath on a fairly regular basis to keep the old joints going lol!!!! She helps quite a lot keeping me supple.

Sorry I could not give you better news regarding the breast cancer tabs - maybe you will be different - good luck with the next 2 years.

Cassie

Frances123
Frances123
in reply to cassie46

Thanks Cassie. I got away without joint pain for about 18 months and really thought I had escaped. I’m one of the late onset so in some ways I’ve had it easy.

I do know that when you come off after 5 years the drug is there for a long time afterwards and can take ages for aches to diminish. Don’t think they ever go completely but lesson to a mild ache.

Yes, I’m on anticoagulant which is another thing I have to consider.

Take care

Frances xxx

I can recommend hemp oil rich in omega 3 and especially good for arthritis, 1 tablespoon a day and it's got a nice nutty taste.

It can interfere with anticoagulants for some people but I self test anyway so keep my eye on it.

I'm in New Zealand I dont know if Hemp oil is available where you live it doesnt contain any thc so you wont get high Dr Google will tell you all you need to know

Frances123
Frances123
in reply to fairgo45

Thank fairgo. I am on an anticoagulant so have to be careful I’m on apixaban so don’t have checks. Yes we can get hemp oil and will look into it.

Many thanks

Frances xxx

CDreamer
CDreamer
in reply to Frances123

I am also on Apixaban and not experienced any problem. I use a hemp oil in cooking and take fish oils.

Frances I get checked on apixaban every 6 months - eventually going down to once a year if I am well - but that's only happened once as AF has come back. Seems weird that some Docs do checks and some don't? I have a full blood test and see either nurse or Doc or both. The best thing to do about pain is to consult with a pharmacist about alternative help from hemp creams etc., and possibly physio if you can. Here I can self refer to the physio but don't know how long it would take to get an appointment as never had to do it. You could always find a good private physio and have a one off consultation. I have a good one here I use sometimes and it costs about £25 for a one hour session at their house - probably if you found one with an office the price would go up. Ask around to see if there is a good physio near you. I too was on Hormone treatment for prostate cancer and had radiotherapy too so found I put on bulk but not weight as I continued to go to the gym all the way through my treatment, I did get fatigue and muscle pain - and was already getting enough pain from chronic back, and neck problems so the exercise helped with the fatigue and pain. After that I was diagnosed with AF and because of that found I couldn't exercise as much as I had and the muscle wastage from the Hormone Treatment kicked in too - and now have just had a Total knee Replacement - All the exercise I had been doing had kept my knee stable but once I stopped exercising as much it got much worse! My oncologist told me that after only taking 9 months of hormones the effects would slowly leave my body over the following year and I found that the side effects - fatigue and joint pain gradually left over that time.

Take care of yourself and I hope you continue to get results.

Des

I'm on apixaban but do take a sub clinical dose of omega 3 (600mg) daily. The manufacturers suggest 1800.

Having had a terrible diet the last 3 weeks while travelling for r/t (me and my chauffeur feel the need for chocolate, biscuits and mince pies sold in hosp shop) there is a lot written about anti inflammatory diet.

I can't comfortably take anything but paracetamol.

My mother swore citrus fruit made her arthritis worse.

Don't know which hormone you are on but worth discussing with breast care nurses as a swap to another may make all the difference. I was told I must get in touch if side effects difficult as things could be changed. Also have you always taken the same brand as this can make a difference too

Thanks Bagrat. Yes have been on same brand for 2 years. Couple of weeks ago I was away and forgot to take them but local Boots let me have emergency supply. It was a different brand and I was a bit concerned about taking them knowing how SE can change from brand to brand. I took them for about 10 days and felt better in some ways but then the back and hip pain took off like you wouldn’t believe. Decided to switch back to usual brand and things calmed down.

I was convinced for last few weeks I was beginning to tread the arthritis path as had all the classic signs in hip, leg and groin. All the other joint aches I was use too and blamed Anastrazole. It was why I was taken aback when nurse said bone scan didn’t show any hot spots of any kind at all! It was only then I considered Anastrazole to be the culprit. The drug that keeps on giving! On the positive side it is hopefully keeping the breast cancer from metastasising and would rather cope with aches and pains than that any day.

Thanks

Frances xxx

I take both - have done for years - Glucosomine chondroitin & high quality Fish Oil. My GP recommended both and I have never seen, heard or experienced any correlation with ectopics or Af. Without Glucosimine my knuckles swell, my knees & hips are painful, no problems - however - my GP (rheumatologist specialist) told me that you need to take 1g/bd of active ingredient for at least 1 months to have any affect.

Frances123
Frances123
in reply to CDreamer

Thanks CDreamer. It’s only in some people it can have an effect and as I seem sensitive to quite a few medications and supplements (or at least the fillers) I’m a bit cautious. After a couple of years to do with surgery/procedures and a few new drugs for BC and worsening Afib I seem to be settling down well now. I’m hesitant to rock the boat as I have been feeling pretty good and near normal these last few weeks after some not nice post ablation moments.

I don’t see rheumatologist and just under the care of BC nurse/surgeon and GP. I am making an appointment to see GP now the scan is clear and see what he suggests. I’m certainly not dismissing glucosamine or fish oil and want to see if certain ones are better. In my village there is a great health food shop and girls there is a mind of information about these things. I will pay her a visit too. I know it will take time but that’s fine with me.

Thanks

Frances xxx

CDreamer
CDreamer
in reply to Frances123

I often get painful joints and muscles as I have a strange condition called Myasthenia and find Arnica gel is just as affective as the NSAID gel which I used to use. Maybe all in my head but my mother-in-law - who was a physiotherapist - always used it. I was always very sceptical as who thinks their mother-in-law knows best? - but I think she was right - as I am finding - she often was!

I also wanted to avoid taking Paracetamol but was convinced by my friend who is a medic as she said if you can take regularly ie: every 4 hours - it will be more efficacious and lower any inflammation. I took that on board and did for about a week and found the pains diminished to a tolerable level which meant I felt better so I did more - so I felt better. I still get pain but at a much lower level and now just take a soluble Paracetamol immediately I start to feel uncomfortable and use the Arnica and that seems to do the trick.

The supplements were specifically for the Arthritis, particularly in my hands.

I react to many drugs - anaesthetics, sedatives, antibiotics, beta blocker, arrythmia drugs, anti malaria drugs to name just a few. I carry a list on my phone and check everything - it takes so much time and effort doesn’t it?

Best wishes

Hello.

I've been taking Omega 3 in a fish oil format for probably 20 years for inflammation, and I find that it is helpful. I also take Glucosamine with Chondroitin (500/400) twice/day. The fish oil helps to control pain and inflammation and I think the Glucosamine/chondroitin helps to prevent cartilage breakdown. The only pain relievers that I stay away from are anti-inflammatories, like ibuprofen, aspirin, advil, etc. I take Tylenol for pain.

I'm on anticoagulants, and I haven't noticed any unusual interactions between these supplements and the medication. One pharmacist informed me that the fish oil was similar to an antiplatelet medication. He is a professor in a College of Medicine, Pharmacy. Not sure I believe him. In any case, my anticoagulant (apixaban) is not an antiplatelet, so I don't think it is contraindicated. That's my reasoning anyway but I stand to be corrected!!

My EP knows the supplements I take, and does not tell me to stop. Mind you, he also doesn't believe that they're doing any good.!!

The other thing to consider is that, in my case anyway, acute inflammation with the associated pain and increased heart rate, triggers AF episodes. In fact, I think that years of uncontrolled acute inflammation and increased heart rate, in addition to the many anti-inflammatories that I was taking in the past has caused my paroxysmal atrial fib.

So, what do to do? Use supplements, which will MAYBE increase AF episodes, and MAYBE too much anticoagulant in your system or don't use supplements and DEFINITELY have increased AF episodes, increased pain, lack of mobility, etc.

Please don't take this as advice for your own health, but that's how I try to manage my health issues.

Frances123
Frances123
in reply to Geonome

Thanks Geonome. I am with you there on what pain killers to take. I too steer clear of anti inflammatories. I can’t take them and get a nasty reaction. Same as I do for ferrous sulphate. I’m fine with paracetamol or co codamol and they do work usually.

I haven’t dismissed glucosamine but weighing the odds. I eat oily fish about once a week so will eat more of that as well.

Thanks

Frances xxx

Quote 'relief from cod liver or fish oil or glucosamine. Sadly these look a no no for me as it can cause Ectopics or AF episodes in some people' - Where did you get this information?

Fish oil is no different from what you would get from eating salmon for example, except that any mercury should have been removed(!) There is no need for any 'filler'. It is supposed to be excellent for hearts. The only problem is that it does have some anti-coagulant or anti-platelet effect, so stop it a week or so before any surgery. There is a risk with taking it with NOACs or Warfarin for that reason, but I prefer to take the risk and get the benefit, but limit the amount I take each day. If I started bruising for no reason I would immediately stop taking it.

Thank you Polski. I read a lot and try to educate myself. I got the information for patient info online and nci.nlm.gov to name a couple and also from talking to others who suffered from palpitations on fish oil supplements but are fine eating oily fish. I know there is no filler in those but meant I am sensitive to fillers in some drugs so have to be careful. I am on apixaban and fine all round with that.

Thanks

Frances xxx

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