unexpected side effect of Flecainide

[Tilly1957]

here is an interesting thing.

i have fibromyalgia and osteoarthritis along with AF. Fibro triggers constant pain, stiffness etc, it is crippling and debilitating a lot of the time, depressing too. i don’t take any meds for Fibro, can only tolerate paracetamol for pain relief (which doesn’t really do a lot for me)

My cardiologist started me on a new medication, Flecainide 50mg 2 x day, to help regulate my heart rythym and help control the af.

I only started it 7 days ago and I have realised my pain levels have dropped dramatically (still got pain but not off the scale) I am not so stiff, I can function! The constant pain in my neck and occiput is now just a dull ache, almost bruised feeling.

i am really hoping this is not a short term side effect …… I wasn’t expecting this, I only researched it after I noticed it, so I don’t think it’s a placeabo effect! .

I found some research on the net which indicates Flecainide as having the ‘potential to regulate inflammatory-immune responses’.

i know I have low grade inflammation for over a decade - gp said it was just my ‘base line’ and not to worry about it.

Any one else found this happening?

[Hidden]

Interesting. Glad it’s helping you. I have PAF, osteo and rheumatoid arthritis but tolerate codiene and miss diclofenac since starting anticoagulants. I was taken off flecainide due to start of flutters on it so never got an anti inflammatory thing from it. I hope it really helps. Keep us updated. Take care 🦊x

[Tilly1957 in reply to Hidden]

Fingers crossed. The thought has crossed my mind that, after the ablation, I will end up (hopefully) only on anticoagulants. So I am now already thinking along the lines of ‘I wonder if the flec can be taken ‘when needed’ for pain relief?’ 🤣 I think at some point a chat with my surgery pharmacist may be on the cards….. (and I will mention to the cardiologist too). At the moment, I am making the most of it and getting many things done that I haven’t been able to!

[CDreamer in reply to Tilly1957]

I think there are many anti-inflammatories that would be much safer to take than Flecainide but enjoy the benefits whilst you can!

I have similar symptoms from a neuro muscular condition and take Resveratrol which is a phenol extracted from plants which has known anti inflammatory properties. Taken alongside an anti-inflammatory diet I found that it does reduce inflammation and therefor pain but I am also on strong immune suppressants which will also have an affect - which I only notice as pain and spasm increase when I occasionally forget to take a dose.

I found that Paracetamol also helps and taken at night, it will help me relax and sleep.

[Tilly1957 in reply to CDreamer]

I think you have mentioned this supplement before, but I decided not to take it due to the potential interaction with anticoagulants, especially as am now on rivaroxaban. Paracetamol doesn’t seem to make much difference for me except if I have a ‘normal’ headache. There are many meds/supplements I can’t take if they list ‘modified starch’ or ‘pre gelatinised starch’ without mentioning the source it comes from.

I am tempted to ask to go back onto Warfarin as I used to take cbd oil and found it very beneficial, and at least warfarin is monitored so I could see any changes caused by the oil.

I realise flec isn’t a medication without risk, and given the unforeseen side effect in reducing my pain levels, hopefully it will point the gp/consultant into the right direction for a safer anti inflammatory. I also found the magnesium taurate helps a little as well.

I doubt any health professional would advise staying on flec purely for pain relief 🤪

As always, I value your input, always gives me food for thought

[Paulbounce]

Hiya Tilly.

What to say? Copy and paste below.

All best Paul

it's interesting to hear that you've experienced a reduction in pain and stiffness since starting Flecainide. While it's crucial to consult with your healthcare provider for personalized advice, I can provide some general information.

Flecainide is primarily used to treat irregular heartbeats, such as atrial fibrillation. While its primary mechanism of action is related to the heart, some medications can have secondary effects on other systems in the body. The potential anti-inflammatory properties you mentioned could be contributing to your reduced pain and stiffness.

It's important to note that responses to medications can vary widely among individuals, and the mechanisms behind such effects may not always be fully understood. If you've found relief from your fibromyalgia symptoms since starting Flecainide, it's definitely a topic worth discussing with your doctor

You mentioned finding research indicating the potential for Flecainide to regulate inflammatory-immune responses. This is an interesting observation, and your doctor may be able to shed more light on this and whether it aligns with your experience.

Always communicate openly with your Doc about any changes in your symptoms or the effects of your medications. They can provide the most accurate and personalized guidance based on your medical history and current health status.

[Tilly1957 in reply to Paulbounce]

Is that for you? Yes, I am definitely having this conversation with my health care providers!

[secondtry]

😁🙏 it lasts.

[Tilly1957 in reply to secondtry]

Ooohhh good to know, thank you x

[Sixtyslidogirl]

I have osteoarthritis in my hip in addition to PAF. As a result of following the Zoe nutrition plan and giving up alcohol my high sensitivity CRP levels came down from 1.97 (normal levels of background inflammation ) to 0.26 (no inflammation at all) and my arthritic hip stopped hurting! I pay for the tests from Thriva and have them every three months so will be interesting to see if the drop is sustained.

[Tilly1957 in reply to Sixtyslidogirl]

How Interesting! My gp said the raised inflammation levels were my ‘normal’ and nothing to be concerned about … yeah, right 🤣. I am now following a low carb high fat diet and am losing weight and starting to feel better - and I know I won’t be in this medication for ever, so have to manage symptoms as best I can for the future. I will have to check what my CRP level was last blood test x

[CDreamer in reply to Tilly1957]

Which test was used for your inflammatory markers? Research and know your numbers.

[Tilly1957 in reply to CDreamer]

Think it was the CRP one? Which I think they now say isn’t a very good indicator. I will check previous tests. My gp hasn’t been very interested in looking for a cause for inflammation. Can yiu suggest specific tests I should check? Thank you x

[Sixtyslidogirl in reply to Tilly1957]

It has to be the high sensitivity test.

[Tilly1957 in reply to Sixtyslidogirl]

I was thinking of the esr test 🤣 - everything gets abbreviated!

[CDreamer in reply to Sixtyslidogirl]

I have a similar experience, alongside taking the supplement mentioned above.

[Sixtyslidogirl]

I should say that I also take magnesium and seven seas joint pills, but the big drop occurred after abandoning alcohol. I was put onto the HS CRP test by Dr John Day of Afib cure who advocates tracking a range of bio markers.

[Tilly1957 in reply to Sixtyslidogirl]

Thank you. I gave up alcohol apart from the odd half a glass of Prosseco maybe once or twice a year- usually triggers an af episode. Magnesium taurate reduced the frequency and severity of episodes, plus calmed my legs at night and improoved sleep quality! I will look the test up, thank you x

[LaceyLady]

Interesting. I’ve similar pain in my occipital area, shoulder, clavical and right foot, low back etc 🤦‍♀️ I had been on flecainide but due to a few episodes earlier in the year my consultant changed me to Dronedarone, I hate it due to the implications and wish he’d left me on flecainide. I can’t say for sure that due to stopping it that these symptoms got worse or not. Want to get off Dronedarone as it causes me itchy sore rash on arms exposed to the sun and I think its causing me dizziness on laying down, ear I think.

[Tilly1957 in reply to LaceyLady]

I noticed the pain relief within a few days. Don’t know what I will do after the ablation and consultant says I can stop it …… will cross that bridge when it happens x

[Gre-ta]

I think I also find that I have less Fibromyalgia pain since I started with Flecainide. I say ‘ I think ‘ because I have never considered that Flecainide might have anything to do with the fact I have less pain. I do also take LDN. It is confusing trying to pinpoint exactly what helps & what doesn’t seeing as I’m reluctant to miss a dose of either.

[Tilly1957 in reply to Gre-ta]

The only thing that changed for me was adding the flecainide, so fingers crossed that I can enjoy less pain while I am taking it xx

[Bagrat]

I have been retired 20 years but was a Clinical Nurse Specialist in Palliative Care. On occasion I worked with Consultants who prescribed flecainide for pain relief but I always thought we used it for intractable neuropathic pain (nerve pain) which was often described as like toothache and almost unbearable. Of course things have moved on since then

[Tilly1957 in reply to Bagrat]

I think it’s about the effects of Flecainide on the inflammatory-immune response.. I dont know if my pain is/was neuropathic. As far as a know, fibromyalgia involves hypersensitivity of the CNS, so who knows! A lot of drugs have a wider range of uses than the main one.

[Hidden]

Welcome to the senior years…you either end up with a disease ending in “itis” (infections) or an “Otis” (inflammation).

Fibrosis is caused by inflammation.. often a result of a diet high in omega 6 like cooking oils.. biscuits cakes etc..the cure is to increase foods with omega 3 you can often reduce inflammation just by taking high grade fish oil ..good olive oil..or flaxseed…olive leaf extract all lower inflammatory processes.

Fibrosis(scar tissue) can be reversed using serrapeptase.. it dissolves fibrin… which in turn. An lower blood pressure and help free up joints… you can research these things on the internet and make an informed choice…most doctors are still scratching their heads .. but a small number are writing papers that confirm all the above… best wishes.

[Tilly1957 in reply to Hidden]

Interesting, thank you. I don’t touch seed oils nowadays, love a good quality olive oil! Fish oils are contraindicated with anticoagulants, unfortunately. I know nothing about serrapeptase but will have a read about it.

[doodle68]

Hello Tilly I read you post with interest,

I have osteoarthritis in both hips and my lower spine which is gradually progressing also for the last couple of months a ‘mystery ‘ pain in my right thigh which is causing excruciating pain also my leg gives way and I can’t lift it or lay on it and some days I can hardly move at all, being on anticoagulants the only painkiller I take is paracetamol -The Dr seems to think the mystery pain is due to osteoarthritis I am not so sure

I had an ablation in October but my AF returned in days then 3 weeks later I had a cardioversion which didn’t put me back in NSR. I recently saw the EP who performed the ablation and although I had tried flecainide before and had problems with it he asked me to try it again . I started taking it 7 days ago , The day after starting flecainide oh joy I went into normal sinus rhythm then yesterday and today I am able to move my leg a little better I could actually get my leg into bed without wanting to scream ,

I will see how things go ,I think my thigh problem is due to some kind of inflammation so maybe the flecainide is helping ,

[Tilly1957 in reply to doodle68]

fascinating isn’t it. I also have found dairy, grain and chicken aggravate all my symptoms. I did t believe it about chicken, so have been eating it again over the last month - now I am going to exclude it again.. I also ate lots of lovely home made desserts full of cream etc over the Christmas period ….. sometimes the gratification is worth the consequences but I have decided no more! Although I am sure, due to the flecainide, I haven’t reacted as badly. Self discipline is a skill I am still learning 🤪 But am glad you are finding some relief x

[HarvestMoon1]

Hi Tilly, thought you might find it interesting to know I’ve been prescribed Flecainide by a pain clinic specifically for fibromyalgia (I don’t have any heart problems), after nothing else worked for me (so was really at the end of my rope.) It definitely helps fibro pain and stiffness immensely! Been on it several months and there’s no sign of the effects diminishing.

I do feel pretty flat and exhausted on it though, but I think some side effects are perhaps the price of being way more mobile and in less pain. I’d give it to all the fibro bods if I could.

[Tilly1957 in reply to HarvestMoon1]

That is brilliant! I will come off it eventually after the ablation for AF, but if the fibro gets worse I will hope to go back on it maybe. What dose are you on? 😊

[HarvestMoon1 in reply to Tilly1957]

Thank-you so much! 😊 I really hope you can stay on it too! I feel like the specialist who prescribed it gave me my life back. The sweet spot for me is about 200mg a day, split into 75mg in the morning, 50mg late afternoon and 75mg at night. I still have a bit of pain (which a slightly higher dose did wipe out completely) but I dropped down a little to 200mg due to side effects (exhaustion and blurry vision). That deals with almost all my stiffness, quite a bit of muscle weakness, and 70% of the pain.

I’d definitely consider it as a safety net for the future even if you don’t stay on it after the ablation. Even knowing there’s something that can help is such a weight off and not something I think enough of us with fibro get to have.

Wishing you lots of good health and happiness. ☺️

[Tilly1957 in reply to HarvestMoon1]

Thank you. I wish you the same 🥰