Stopping Statins: hi guys after a year... - British Heart Fou...

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Stopping Statins

sickandsore profile image
16 Replies

hi guys after a year last year, of frightening chest pains and ? Heart attacks, going through umpteen tests and a stent procedure ( they didn’t put one in as my heart disease was not significant enough). I went from being on 5 daily meds for my heart to then being discharged completely with just taking statins. No real follow ups or explanation by consultants.

I’ve been struggling with weight gain, am now in menopause and on HRT. I’ve been feeling incredibly tired and sluggish and in pain a lot. Then I read about the negative effects of statins, so I decided to stop taking them about a month ago and I’ve started losing weight, have more energy and in less pain in my joints generally. I have not discussed with my GP as yet ( I’m due a telephone medication review in a couple of week).

My question is has anyone else just stopped their statins? And how have you felt since? What are the risks to stopping them regarding heart/stroke when you have mild heart disease ( my Lower ascending artery is around 30-40% blocked).

My cholesterol was slightly higher than recommended so I’m addressing this with healthier eating and walking more, my job is active so I’m up walking around most of the day too. I’ve lost just over 5kg in a month doing that and stopping the statins. I had read statins can increase your body’s intake of calories so I thought surely that’s contradictory if you need to lose weight to get a healthier heart and keep cholesterol’s down?

I would welcome any thoughts or advice.

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16 Replies
AlfredV profile image
AlfredV

I had a heart attack and a stent. I've changed my lifestyle considerably, and against medical advice have slowly ceased all medication. I've been med free for almost a year now and doing better for it.

That said, we are all different and this approach probably wouldn't suit most people. Unless you know the root cause of your health issues and are confident you are able to correct it, then it may not be the best move.

As always, don't make changes to your medication without first discussing it with your doctor. Wishing you the best.

Statins are prescribed to reduce your ongoing heart disease risk, and are, as far as I am aware, usually prescribed to anyone who has known heart disease whether their cholesterol is borderline or not. Anyway, you should not stop taking any medication without first consulting your prescribing physician, although stopping statins temporarily will not significantly affect your long term risk. Next you sound like you have been suffering from the well publicised statin side effect of muscle pain and discomfort but which actually, apparently, only affects less than 1 in 10 who take statins. The solution to that may be for your prescribing physician to change the statin to another sort since that can apparently work in some cases in eliminating the muscle side effect. And as to all the other issues you mention there is a lot out there courtesy of Dr Google like so many things like that, but the only person I would put my trust in is my doctor in the first instance, backed up with a common sense view by myself.

Milkfairy profile image
MilkfairyHeart Star

I can understand why you are questioning whether you need to take statins, especially as you have done so well losing weight.

Has anybody considered non obstructive coronary artery disease NOCAD as a possible cause of your symptoms?

These types of angina are often overlooked as sadly there is still a lack of understanding of these conditions amongst Cardiologists and cardiac nurses.

Only a few centres offer the appropriate testing for both microvascular and vasospastic angina.

Microvascular angina in particular seems to affect women more often, presenting first during the menopause. It can be associated with being over weight, diabetes and raised blood pressure too.

Statins are useful to help prevent the development of both obstructive and non obstructive coronary artery disease.

Statins as well as reducing cholesterol also reduces inflammation and stabilises even small areas of plaque in the arteries.

By not taking statins you increase the risks of both CAD and NOCAD, eg heart attacks, stroke, heart failure and major adverse cardiac events.

I suggest you discuss your discision with your GP and seriously consider taking statins again.

Perhaps ask to be referred to a Cardiologist who understands microvascular and vasospastic angina too?

Dear Sickandsore.

Its time to find out why you were placed on statins , it seems odd to me that all your other heart medication has been stopped, but they still insist on you taking the statins.

Believe me there will be a reason and just because the blockages to your heart were deemed not bad enough to stent doesn't mean that there is not plaque there that needs stabilising, which is one of the main jobs the statin does.

You truly maybe unlucky and are suffering with the rare side effects that you state { any of which can be other things } in this case then ask to change the medication to another that will do the same job protecting breakages to that plaque.

Hopefully you will be able to continue your life free of side effects and be protected from future problems.

Take care.

sickandsore profile image
sickandsore

Thank you all for your replies today. I will make an appointment with my GP to discuss further. I think one of the issues was that I agreed to take part in a trial with a London hospital so my tests and procedures moved very quickly, then once they decided I was not a candidate to continue in the trial ( because I did not require a stent) they just dropped me with no further appointments or explanation other than before I was discharged they told me that they didn’t understand why I had, had so much chest pain because it was not heart related! So when I received a letter a few weeks later it described the Lower ascending artery was partially blocked and I was to remain on statin medication, I guess I just went with the flow until I read about the calorie intake issues and I had been wondering why I had piled on so much weight last year I went from being a size 14/16 to a 20. I didn’t realise there were alternative statins so I will definitely speak to my GP about those and potentially look at alternative HRT meds because they too might be causing issues with weight.

Truffles2 profile image
Truffles2

I know taking meds is difficult with all the side effects etc. but I would talk to your GP and ask to be referred to a lipid clinic. In my last e 30s ( now 58) I stopped taking statins for this reason a couple were tried but it was the same, anyway I have had a few issues with my heart and a week ago had to have a bypass operation( really not pleasant). My GP referred me to a lipid clinic before my surgery and the consultant said my electrolyte and vitamin balance were totally off which makes side effects worse, she also thinks I might be suffering with sleep apnea, so am waiting for the results of a sleep study. She also said it might have all escalated because of the onset of menopause. As I left she put her hands on my knees and said to me we will sort out your bloods we will investigate get you on the right medication and you can see this whole episode as a makeover in 6 months you’ll be a new women I wish I had take more care of myself and not in effect ignored my Drs at the time. I might not of been where I am now with a long recovery ahead of me. I really think there should be more prevention and support and understanding of peoples struggles. So I’d say visit your GP and get a referral there is life after chloresterol

Smitty1956 profile image
Smitty1956

Hi, Sickandsore,

My main advice would be to talk with your doctor before completely stopping any medication. When I was a much younger person, I would probably have just stopped taking a medication if I really wanted to, but now I realize that that behavior can be risky. Just a thought.

I had a HA in March 2022 (almost a year ago). The doctor in the emergency ward prescribed 80 mg of Atorvastatin. I read everything that I could find about statins. I knew that I would likely need these pills for the rest of my life, but I was scared/anxious about taking such a large dose—going from zero to 80 mg overnight. I saw my doctor the next week, and I discussed dropping down to a lower dose just to see how it might go. She looked over the blood tests and CAT Scan from the time in emergency, and she felt that we could try a lower dose.

Atorvastatin can be prescribed in 20 mg, 40 mg, or 80 mg strengths. She prescribed 20mg. So, within one week, I went from zero statins to 80 mg and then down to 20 mg. Bottom line was that I was still having problems with my heart, extreme anxiety, and just not feeling well even after 2 months on medication. At that point, I saw a new cardiologist, who wanted to change the Atorvastatin to 80mg again. I finally agreed to an increase to 40 mg—not the highest dosage, but more medicine in my system. She also increased the mg of beta blockers that I was taking per day. Slowly, I did start to feel better.

Last week, I had my first blood test (lipid panel) since my HA—11 months ago. My cholesterol results were amazing (at least to me and the doctor says that she is pleased too). My total cholesterol was down, my LDL (bad) was down, my non-HDL was down. I was honestly pleased with these numbers as a good starting point. I mainly credit the 40mg daily of Atorvastatin for this change. Now, I did make lifestyle changes too. I eat a lot more veggies, smaller portions, and I lost 30 pounds since March. However, I would not stop taking a statin drug. I would consider a lower dosage at some point, and I would consider trying a different statin if I started having too many muscle issues.

This is just my opinion. The good that I get for my cholesterol levels and blood vessels outweighs some muscle discomfort/side effects for me. I can only speak for me. I know that I could still have another heart attack, but I am hoping that lower cholesterol numbers mean less future blockages.

What I would suggest to you is to talk with your doctor about stopping statins altogether (or any medication for that matter) and to have a blood lipid panel done to check your cholesterol levels. Except for the HDL “good” cholesterol, I am hoping to get all of those numbers as low as possible going forward.

Best wishes to you.

Thanksnhs profile image
Thanksnhs

Hi my hospital believe everyone that has anything at all wrong with their heart should be on statins, my cholesterol still went up to 6.2 so they doubled my dose to 40mg I then started to get pains and weakness in my wrists, hands and ankles, I blamed the increased dosage of them but after investigation it turns out I have athritis! Dr Chaz was well wrong🤣 my cholesterol is now down to 4.2. I would definitely speak to the Dr about your symptoms, a change of meds might be all you need or it maybe something else. Take care char

Coxtribe profile image
Coxtribe

One thing I hadn't appreciated until I had a similar conversation with a specialist is that statins not only help to reduce cholesterol levels (notably the 'bad') but also help to stabilise any existing plaque deposits in your arteries. In my case this was significant because it will help to reduce the risk of a further event (plaque breaking away and causing a blockage or resulting in a bleed/blood clot). Maybe something to consider? I hope this helps.

Qualipop profile image
Qualipop

Please don't use Google or social media to decide whether or not to take medication. Ask your doctor. There are far more benefits to s tatins than just lowering cholesterol and several different ones you can try if you really think you are having side effects. Mine had to be changed after a heart attack because atorvastatin didn't suit me but I still lost 2 stone without trying.

MWIC profile image
MWIC

I’m not a fan of statins as they cause me severe muscle pain but I won’t stop taking them as they not only help to reduce cholesterol they also help to stabilise any plaque in your veins helping to stop any breaking away which can cause clots - talk to your GP

MumaLines profile image
MumaLines

Hi Sickandsore, my personal experience of taking Statin, Atorvastatin, as I have hereditary heart disease with too many fatalities at young ages. Over the years my Cholesterol has been 9, down to 7 and after my Bypass 5. Sadly increased to 6.5 again and diagnosed with Hereditary Heart Disease with too many fatalities so young.

I ached and my joints seriously hurt all the time. I couldn’t even walk very far or without severe pain. My life has changed dramatically since taking RUSAVASTATIN, the best ever. No more pain and after 3 weeks my cholesterol was down to 4.5 which is fantastic.

Maybe you could try Rosu instead of not having any heart attack prevention medication just to be safe.

Jane xx

sickandsore profile image
sickandsore in reply to MumaLines

thanks I will ask my GP about that one. Very pleased for you that you found something that helps you x

Miriam123 profile image
Miriam123

I was put on statins (atorvastatin) 40 mg and had similar symptoms. It seemed every muscle ached. Day to day activities were so tiring. Spoke to Doc, he suggested to reduce to 20mg since my cholesterol was not high. Since that time I have been on 20mg and fine, pains went away. I am back to usual activities and walking every day. Seems even if your cholesterol is within normal range, the protocol for anyone with heart related symptoms is to prescribe statins.

sickandsore profile image
sickandsore in reply to Miriam123

thanks I’ve now seen a GP and I’m now on a different statin and a much lower dose. My cholesterol apparently was not high I was purely prescribed them for the plaque in my LDA. So🤞 these ones won’t cause issues.

sickandsore profile image
sickandsore

I requested a face to face appointment after giving the GP online clinic a run down of why I need to see them, I got a txt msg with a telephone consultation for just over a weeks time🙄 I suppose I’m lucky to even speak with someone but I would have felt better actually seeing a doctor. What’s happened to the person centred approach in healthcare!?

Thanks for your msg

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