There was a short piece in the BMJ the other day advising patients taking statins to be alert to new symptoms for myasthenia gravis, or worsening symptoms of pre-existing myasthenia gravis, and to seek medical advice if these occur. It is quite rare, but thought I would let people know. The government has produced a paper.
Statins - reports of myasthenia gravis: There was a... - PMRGCAuk
Statins - reports of myasthenia gravis
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piglette
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Thanks for this Piglette, at least Pred is used to control it, so I suppose that is on our side, but good to be aware.
Thank you for this piglette, very interesting to me. I decided recently to take a short break from my 80mg a day Atorvastatin as I think it may be partially responsible for my increasingly painful legs and feet.
I think a lot of people have problems with statins, I know my father did.
Do you mind sharing what kind of problems your father had.
He became a total zombie. When he came off them he returned to being the life and soul of the party.
Thanks, I hadn’t heard of that reaction. Sounds really awful, glad your dad returned to his normal outgoing self.
It was amazing the difference.
I can imagine, were you able to report it as a side effect of the statin?
I normally do, but I am not sure I did that time.
I read that Statins take out cholesterol which the brain uses to function well and people taking statins should supplement with COQ10.
My father did too. Had terrible muscle aches which made it hard for him to walk. He did his own experiment, stopped taking them and recovered. The symptoms returned when he restarted the statins. That’s why I’m reluctant to start them, despite my doctor’s advice. I have enough muscle aches to cope with from PMR!
A friend of my husband who was otherwise fit and healthy was prescribed statins. He drove into town to go to the bank, by the time he arrived there his legs were so weak and painful he couldn't get back to his car and had to 'phone hjs wife to come and collect him..Stopped statins and legs returned to normal! There are too many stories like this, they can't all be coincidences.
80mgs is one big dose, how low did that get your cholesterol? Given you have had an MI could you not just reduce the dose and see what the cholesterol rises to?
I’m waiting for the results of my latest blood test, I will ring my Surgery to find out my cholesterol levels. As you have suggested I could also ask about reducing the dose or changing to a different medication. I may be wrong but I think statins also stabilise plaque. Thank you for prompting me into action!
You are right. People get quite confused about statins and believe they are only given to people to reduce there cholesterol levels and so assume that if they get normal blood cholesterol levels that they can stop taking them.This isn't the case with patients whom are given them as a Medication for cardiac problems. If it were when you got normal blood cholesterol results from using diet and lifestyle, or short term statins, your doctor would agree that you should stop the statin instead of recommending that you continue it.
One main reason statins are given to cardiac patients is to reduce the risk of cardiac events caused by plaques on the arterial walls.
The statin, helps to reduce the speed of formation of new plaques but it's most important role is to change the lipid content of existing plaques and stabilise them reducing the chance of them causing a blockage that can cause a serious heart event or require surgery.
In this sense the statin is given as a preventative of blockages in the same way as a blood thinner is given to reduce the risks of blood clots.
Statins are given to patients with a high cardiovascular risk either as a Primary Preventative or a Secondary Preventative.
A Primary Preventative is a statin given before a heart attack has happened or surgery is done to reduce the risks which would cause them and in this situation the doctor would still recommend that you take them but reluctantly understand your choice to use other methods if you don't.
A Secondary Preventative, however, is a statin given after a heart attack , cardiac surgery or intervention or stroke and it is considered to be as important to your cardiac treatment as a blood thinner.
All doctors and health providers , including the ones whom promote Non Statin Methods or Diets, agree that if you've been prescribed a statin as a cardiac Secondary Preventative you should take it.
The books or supplement alternatives aren't suited to chronic cardiovascular patients ( most often because the don't help stabilise plaques and often affect how well your blood thinners work) They were not created for cardiac patients although all doctors would agree that you need to use diet and lifestyle changes and statins , hand in hand , to protect your heart and reduce the risks.
Your own doctor will work with you to find the right statin type and dose for you to both do the essential job and reduce the side effects. If you can't take a statin because of severe side effects the Doctor will give you the statin alternative , Ezetimibe, to help.
You dose is rather high which could be the biggest problem. This may have been necessary in the months after your heart attack and treatment but you should be able to reduce it now to a dose that gives you the benefits with less side effects.
More common doses after recovery are between 20-40 mg depending on the patients history and the statin used.
I use Rosuvastatin it does give me less side effects than the more common first line Atorvastatin and it's actually more efficient too so it's worth asking to change to it and try it.
I would definitely recommend that you contact the GP as soon as possible to discuss your problem and request trying a lower dose so that you can get back to using your statin in a way that suits you sooner rather than later.
If you need to try other doses or statins it can take trial and error to find the right one , and I know a number of people whom have to use Ezetimibe and have a positive response to it so there will be options for you it just might take a little time to sort it out.
Take care , Bee
Thank you for your detailed response Bee. You have given me some useful info. and suggestions for which I am very grateful. It’s good to know there are options available.
Best wishes to you.
This is a helpful post Bee. I have been on 80mg Atvostatin since mid August following a TIA and high cholesterol (8). I have suffered side effects such as an intermittent burning pain on the ball of my left foot (and final three toes) which has worsened over time and aching calves while walking, haven’t felt great on them, fatigued. Had bloods Sept with cholesterol reduced to 3 but slightly raises LFT markers. Liver function tests repeated October with results significantly raised. Saw GP today, advice is to stop this statin for a month, repeat LFT and try a different statin. I’ve noted Rosuvastatin…maybe that’ll be better. All about risk. I don’t want to be heading for liver damage, neither do I want a stroke so will have to patiently work out the best medication required.
But also consider discussing Ezetimibe with the GP as an option if those LFT results remain high. You may be ok on a different statin and dose , but you may be one of those people whose liver markers and side effects prove that statins aren't for them and it would be healthier to use the alternative sooner rather than later. Let us know what happens , Bee
I’d already added that one to the list for discussion but thanks Bee. I’m seeing a sympathetic doctor so will see how I go. I do seem to respond badly to meds. On the high doses for GCA it was horrendous and my reaction to the Zoledronate infusion for osteoporosis was grim for a couple of days. That was pre GCA and I’m due the second one imminently which I’m not looking forward to. I used to be so fit just a couple of years ago. I still manage some exercise and eat healthily but like many of us here it seems to be bad luck that these conditions are piling up.
Thank you for detailed reassurance. After a TIA in October I’m on 40 mg. Of statins. I’ve felt no effects from it all but will now be aware of muscle weakness etc…. You explained it better than my GP. She did say it works to keep plaque off artery walls.
The number isn't always a guide - each statin has a different figure for the effective dose.
It is the recommended dose if tot cholesterol not below 4 ( LDL<2)as secondary prevention after MI, I think, but seems a lot compared to my measly 10mgs. 'Spose it depends on whether Rachmaninov2 has any benefit stopping it. Yer dreaded risk: benefit decision!
Are they the same statin? 10 or 20 is the usual starting dose, some patients may need 40 - but I suppose if 40 doesn't work, some doctors would just increase the dose rather than try a different statin.
Yup. I was coming at it from the side effect likelyhood at a bigger dose.
Just added a bit. Who knows ... Is your 10mg achieving what the doctor wants?
Yup, 8 to 4.5! Primary prevention not secondary. Gives me cramp though 😤
I have always taken 80mg since heart attack. I have read that Rosuvastatin may have fewer side effects but is more expensive.
There's a surprise it isn't offered ...
Yes!🤷🏼
You’re right, the dreaded risk versus benefit decision. I know I should have discussed it with my doctor first, but the pain was becoming unbearable and I was having difficulty walking so made a snap decision. Sometimes it’s difficult to get across to the doctor how bad the pain is.
Is the pain worse when you walk, relieved by rest; has yr dr checked the pulses in yr legs ? See what the pain management chappie says?? Youve got a lot going on, must be hard for you.
Yes, the more I walk the worse it becomes. Once I’ve been asleep for a few hours it stops then if I get up in the night to go to the loo it starts again. I don’t remember the doctor checking the pulses, but seem to remember my physio. checking them and think he said they were OK.
The pain management chappie will want to try to decide where the pain is coming from so he can advise re treatment. Best of luck for tomorrow.
I’m looking forward to getting the results of the MRI scan and hope that will help him reach a decision too. Thank you so much for taking an interest and for your good wishes, it helps a lot. Great advice and support on this forum for which I am so thankful.
Good to know.Thank you Piglette!!!
Couldn't manage atorvastatin (calf muscles so sore) so switched to Rosuvastatin - even worse! GP decided I was statin intolerant so prescribed Ezetimibe 10 mgs a day. Due blood test in couple of weeks to see if any improvement. Not quite sure what difference is but calves don't hurt anymore xx
I am also trying Ezetimibe 10 mg at the moment just started with a blood test in about six to eight weeks.
Mine was lower with it - not sure how much! But they have stopped complaining I need to be on a statin which is something! Apparently in combo with bempedoic acid it is even better - and there is a combo pill.
That’s the one I’m waiting for, bempedoic acid, but my referral to the Lipid clinic hadn’t been sent!!! And I didn’t get in with Atorvastatin or Rosuvastatin! And they don’t seem to want to prescribe Ezetimibe!
I took Simvastatin for years prior to my diagnosis of PMR and suspected it of causing the symptoms. Myasthenia gravis seemed to match my symptoms when I googled it and it took my GP many months and many opioids later to come up with the PMR confirmation.
I will always have high cholesterol but I try not to let it worry me. My body doesn’t take well to new drugs thrown into the mix so I try and maintain a healthy HDL/LDL ratio by diet alone, although at my last blood test it was 9.2!
Executive helped reduce ldl cholesterol by 1.2 mmol/l in my case On basis recent blood test so it is some help
Correction Ezetimibe
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Also lowered mine by 1.2mmol/l in my case too! Does it continue to lower I wonder - at least going right way x
I was told describe would lower it but perhaps not as much as statins. I had an inclisira n referral but no date as yet as the clinic is overwhelmed.At least it helps
I just had notification via app 'result abnormal but expected'. No further contact. Cholesterol 6.5 overall at the moment. What is inclusion? X
I was prescribed 80mg Atvostatin after a TIA. After one month later I had intermittent throbbing, burning pain on the ball of my left foot and last three toes. It becomes worse after walking - calves can ache too. I’ve just had a repeat FBC after Sept one showed above high reference ranges. These have increased and I’m told I need to see the doctor - appointment tomorrow. I hope I can get these changed /reduced as cholesterol has changed from 8-3. Very concerning to see how aspects of the FBC indicates potential liver problems. There’s enough going on in our bodies it’s hard to work out what is what but I think it is a side effect of the statins and possibly the high dosage.
Thanks, reading this has reminded me that I'm supposed to have a lipid test in October after my statin dose was doubled back in June. Apparently, the criteria have changed. I was stable at 5.7 and that's now designated too high.I'd better ring the surgery to remind them!
Took my first 20 mg Rosuvastatin yesterday. Will keep you posted. I have a lot of plaque throughout my arteries according to recent CT scan. Pros and cons decision. Cannot tolerate much more pain, with a total of 8 fractured vertebrae to contend with. Fingers crossed. Total cholesterol is 6. something. Next bloodwork in 3 weeks.
Interesting.
I don't take statins but have MG. It started in 2019 (pre-diagnosis), went away when I started my high dose of Pred in 2021, but once I tapered down to about 5mg has come back.
It's annoying but not painful - just a weird sensation of a 'slab' of pins and needles in both thighs from my hip to my knee when I am standing or walking and sometimes when lying down.
It does come and go a bit, but I just take it as something that I live with. I had extensive spinal surgery when I was younger, so still get some odd things happen as a result of that.
One of the well known side effects listed on statin drugs is muscle weakness. My sister has tried every statin on the market and when she takes them, her legs give out and she can't stand. I take 5mg daily and I don't have what I would call muscle weakness but I sure am not as strong as I once was.
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