Anyone heard about or experienced an improvement in PMR symptoms following stopping of statin medication? One of my friends is convinced that stopping her Atorvastatin led to complete remission. I have done a google search and can’t find any conclusive research results.
statins and PMR: Anyone heard about or experienced... - PMRGCAuk
statins and PMR
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Porridgeandgrapes
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Your post should have brought up lots of related posts about this, it's an often talked about subject here with a fairly even split of for and against.
The Related Posts doesn't appear to be working at all at present! DL and I have asked Fran to ask HU if they have changed anything about the algorithm! If they know what one is that is ...
Oh dear, I suppose I should act surprised!! I would have answered more fully if I had realised.
No probs…. I doubt anyone is surprised at how HU works [or not!] 🤦🏻♀️
👍
I stopped my atorvastatin for 3 months and it made absolutely no difference to my pains and stiffness so I went back on them
DorsetLadyPMRGCAuk volunteer
One of the most common side effects of statins are muscle pains… so perhaps your friend’s PMR was actually a combination of both without her realising the connection. PMR may well have gone into remission anyway - with or without stopping statins.
As Bcol has said there is a lot of info on statins on forum… and plenty more online. Although there are articles stating statins do have anti inflammatory properties, I’m sure if they worked on the inflammation caused by autoimmune diseases, there would be a humongous song and dance about it… 😉
PMRproAmbassador
It is acknowledged that in some people some statins can cause PMR-type symptoms. PMR isn't the actual disease, it is the name given to a set of symptoms and they can be due to a range of underlying causes. In diagnosis, the idea is to rule out all the others and then they can say you have the PMR we talk about here.
I have tried 2 different statins - both long after the PMR symptoms started and both resulted in very noticeable but different worsening of the PMR symptoms. The first almost had me in a wheelchair because I couldn't walk up even a very slight slope, the second was accompanied by a sudden severe worsening of the back problems I have which immobilised me briefly. The first was definitely the statin. The second could have been coincidence but we weren't taking the chance! I now take ezetimibe and bempedoic acid - nothing I can identify there,
Some people need to try up to 4 or more statins before finding one that suits them. Others never have a problem.
Oh! How interesting! I am six weeks on Ezetimibe and about to have a BT today to see if it is working! Fingers crossed as I don’t seem to have any inconvenient side effects. On Rosuvastatin muscle aches were the least of my problems. I had IBS, sinus issues, brain fog and a serious Herpes flair ll of which cleared with in 2days of stopping. Unfortunately cholesterol rose again so here I am trying Ezetimibe.
That's interesting..... I'm taking 40mg Atorvastatin daily and been on this medication for quite some time. Out of nowhere, back in May, I began to develop digestive issues that caused many IBS type symptoms for which I'm currently being investigated.
During a two week holiday in June, I forgot my statins and had a reprieve of symptoms. I just assumed whatever had been wrong was settling down.
Since I returned home and began taking them again, all the discomfort and digestive issues are back.
This may be pure coincidence as I have had periods of several days when things have improved, but it is a potential consideration worth further exploration!
The so-called "benefits" of statins are at best marginal, despite what Big Pharma would like you to believe! And as you get older they become even less useful. Google Dr Malcolm Kendrick for a review of how useless they actually are!
Dr Aseem Malhotra a renowned UK cardiologist has done a lot of research into the risk benefits of statins ,many published in the medical journals . I was shocked when I read and heard the statistics and data . Certainly worth researching the risk v benefits of any drug we take.
What were they?
I'm sorry I don't remember the exact figures out of my head as listened to him a few years ago but do research his talks on statins on U tube and I'm sure he explains his findings from research in his book entitled
A statin free life
Malhotra was very good in his early days but I got the impression fame and fortune went to his head and he became quite extreme in his views.
Not everybody agrees with his studies - but then not everyone agrees on statins…
Will do. But the absolute fear of a stroke is all! Can you have a stroke if you are on blood thinners? In spite of high cholesterol ?
Depends on a lot of factors but the risk is considerably lowered. I'm on blood thinners because of atrial fibrillation - the thinners prevent the formation of clots in the base of the ventricles which can then be disturbed and sent off around the circulation. But you could still have a stroke due to a bleed - and in that case the thinners can be a problem, making a bleed worse. It is all very complex!! No simple answer.
I know people who felt better after stopping statins and they were not even taking steroids. They turned by father into a zombie, he was the life and soul of the party when he stopped.
That’s interesting as my GP has recently put me on avorstatin and I started feeling really weird, and very depressed more like doom and gloom feeling. And also I felt disconnected I didn’t associate it with the statin but I had a bout of really bad indigestion and thought maybe the statin caused it so stopped taking them so I saw my GP who put me back omeprazole 20mg and the indigestion has now gone and I started back on the stains and started feeling weird again, so I have stopped them and feel fine. I’m rather afraid to see GP as they will want to try another statin. !!
I’m only 13% likely to have cardiovascular problems so that means I’m 87% likely NOT to surely??
I think doctors were getting financial incentives to get patients onto statins. It is the most succesful drug financially ever!
I asked my doctor about that and he laughed (in a friendly way) and assured me he wasn’t getting any incentive for putting me on statins.
That's ingenuous, he gets an incentive for measuring your cholesterol, whether you go on to take statins or not. Hence the letter I had recently from my surgery for a "well woman check" which includes a cholesterol level.
That is how they get some of their payment from the NHS. They are not employed by the NHS, but have their own private organisations, usually partnerships. This is an article about it “How GPs are Paid to Prescribe Ineffective Drugs”
patrickholford.com/advice/h...
Do you REALLY believe everything Patrick Holroyd says? This is Ben Goodacre's view
theguardian.com/science/200...
He isn't even a science-qualified graduate, he has an undergraduate degree in psychology. But he has written dozens of books about nutrition - and founded an empire supplying the essential nutrients to go with them! Which no doubt he is saying are the EFFECTIVE drugs.
I was agreeing with him in this case as the article was about Quality and Outcomes Framework (QOF)points, as Charlie892’s GP’s was saying no incentive programme existed for GPs in prescribing drugs. I just thought the article put it quite well in layman’s terms.
Fair enough. Though to be fair to Charlie892's GP, they probably don't register the targets that were imposed as an incentive programme. It was presented as a way of ensuring patients were being monitored properly and then treated appropriately. As it turns out, I'm not sure it has really achieved much improvement in health status amongst many patients, Loads of people simply don't take the drugs prescribed for all sorts of reasons, some fair enough if they can't afford the prescription charge, but some is just apathy and fear.
kingsfund.org.uk/insight-an...
They have been talking about getting rid of QOF points ever since I can remember, at least they should change the system. I also think they should pay by visit rather than on the number of patients, then suddenly we would have lots of GPs’ visits available!!
Quite - the fault is that the money doesn't follow the patient, whether at the GP or the hospital, and the QOF stuff hasn't improved preventative medicine.
I am sure we could produce something better! I suppose it is too much effort when everything else is in such a mess. The trouble is current QOF really acts as an incentive to prescribe, a different incentive is needed. I reckon they could save at least the money they got off the pensioners on the winter allowance by cleaning up the QOF system if they pushed people towards a healthier life style and stopped the vast amount of pills being flushed down the drain. The trouble is patients have no idea of the cost of drugs. Perhaps they should be given a “till” receipt when they have drugs prescribed?
But they do get perks from pharma companies for giving samples and referring.
‘Perks’ are very limited nowadays, the government jumped on the freebies. I remember when doctors were given trips on the Orient Express!! The drug companies got round it by having conferences in exotic places. Even that was cut back though. It was mainly hospital doctors who got the best perks as GPs are not allowed to prescribe some drugs which tend to be the pricier ones. Those were the days.
I do dislike the statistic markers like the QRISK. They only help researchers and doctors but I suppose they are a good thing. Certainly nice for doctors prescribing. I think it is up to you to decide. It would be interesting if you found a statin which felt fine so maybe try another and let us know. I’ve been put on Ezetimibe and wait BT result to see.
Hi Ridge
I’m not sure if I want to try another statin.
I feel I am being given something to stop something that I don’t have. If you get my drift. A bit like “i better wear a crash helmet walking down the road in case I get hit by a car”
But that’s just my opinion. I agree preventative measures are good but I think we have to weigh up the side affects of these drugs also.
Carole
They do predict likelihoods in real life too, not just research. And the idea of the risk scores is to preventative measures can be taken for things that are likely - also taking into consideration potential adverse effects so that benefit outweighs disadvantages. The idea is to reduce risks at the point where it is still possible to do something - not waiting until the condition is so advanced that it is no longer an option to change the trajectory.
I have had severe gluteal pain since my Ataravastin statin dose was doubled. It hadn’t occurred to me that it was the drug. I’d been thinking it was a PMR flare and should I up my dose for 5 days. I’m going to stop for a week to see what happens. Thank you for this post.
Have a look at the post I have just put up as well.
They were the pains i had after a a month of atavastarin. I stopped them , ains went.
Do let us know. I did ask the doctor how I’m meant to know if I get muscle problems whether they are caused by the statin or a flair. He shrugged! In the end I had loads of other side effects which I didn’t realise were statins related until I was told to stop taking them for a week. Within two days the side effects stopped. I don’t pre read side effects cos of auto suggestion!
Yes definitely - there are some people who develop PMR and or PMR like symptoms when taking statins. There are several medical papers and journals written on this subject.
As soon as I stopped the statins my PMR pain and symptoms went away...that was 4 years ago.
My cardiologist also agreed that statins can have this effect on about 20% of people who take them . I guess it must be genetics.
Have a look at the post I have just put up as well.
Thank you. That was very informative. I have a gp appointment tomorrow. I’m coming off Avaraststin whatever she says. These pains are too much.
So what are you on now?
I started taking Atorvastatin about three weeks ago and within two days could barely stand up with vertigo. I stopped taking the statins and within 5 days the dizziness had gone. My GP insisted it was not caused by the statins and to start taking them again, I am now back on medication for the dizziness and stopping the statin.😫
Much the same effect as atorvastatin had on me - weakness and struggled to stand and walk. Your GP is wrong - see a different one.
I will. It’s a real pain not being able to drive.
Tell me about it!!! That nearly finished me with unmanaged PMR when I was stopped driving for another, totally incorrect, reason. I should have rung DVLA there and then instead of being a good girl and sending my licence in! It was such a pain getting it back ...
And to add to the opinion - have a watch of this which I will also post as a separate thread so others see it too
acpjournals.org/doi/10.7326...
Interesting listening, thanks.
I took Rouvastatin for 5 days. Had an optic migraine and stopped med. got PMR 2 weeks later.
Many years ago I was put on Simvastatin (moderate intensity). I began to get muscle pains in both my thighs.
The doctor changed it to Atorvastatin (high intensity) & I have never had any problems since.
I didn't know about PMR back then, but the symptoms could have been similar. I think PMR now gets blamed for all sorts of arthritic aches & pains etc.
one side effect of statins is a group of symptoms that mimic PMR. Most doctors these days follow patients closely and ask about these side effects when statins are prescribed (many are fine). It’s we’ll know. This sounds like it was the case for your friend? I would ask about a break in statins with muscle aches, to see if it helps. My husband is in them & feels fine!
I am on rosuvastatin 10mg for couple years and would like to stop taking it. Is it safe to suddenly stop or tapering required? I am also on 2mg pred.
As far as I know tapering isn't required - but you really should speak to your GP about WHY you are on it.
ok crazy yogabonnie here bu)t I had high cholesterol for years, refused statins and doc did a calcium test on heart... and the result was 0 so he said no need to take the statins but we would watch it. and for the last year and half I have been doing ice plunges and last test my cholesterol was normal for the first time in 25 years! NOTHING else changed. just 3x week ice bath. just staying... told him he should tell all his patients and he said most people would rather eat right and take statins Bonnie. haha. I think he might be right! but he did think it was the ice baths that did it as there are studies that agree. (course studies are indeed a dime a dozen!) Ice baths help with my arthritis pain a bit. I think.
I’m trying it!!
I went on statins in March April this year afyer a cholesterol test readin 6.4.6 weeks into taking them i had bad pains in the buttocks they definitely weren't PMR type pains
I didnt increase the pred, 2.5mg, at the time if i remember correctly. I took a unilateral decision and stopped the statins. Atavastatin
Over the next few weeks the pains went and i continued on my downward pred journey.
Ive got my next gp appointment end of September. Her email to me didnt sound like she was well pleased with both my unilateral decision to stop and latest the blood results!
Tough - not her body!!!
Indeed. Got to get my big girls knickers on for this appointment😀
I have a gp appointment tomorrow. They persuaded me to take statins and I wasn’t keen. I coming off whatever they say. This pain is awful and I’ve had enough pain for a lifetime.
Big girls knickers methinks!
this exchange re statins comes at the right time for me. In March I had a cardiac arrest and heart attack, so severe that at one point I died. But I’m here to tell the tale!
As a result I was put onto daily atorvastatin at 80mgs. Ostensibly it was because my cholesterol reading was high, well over 6. Now, my cholesterol reading is about 3, a satisfactory level. But no one either at the hospital or GP has suggested I reduce from 80mgs to something more sensible. So I’ve set up a telephone appointment with a clinical pharmacist to talk it through. It will take until 3 September for the appointment, in the meantime I'll stick with 80mgs. I certainly do not want a recurrence of a cardiac arrest etc.
We have a friendly lady in a local health shop and her advice is to stop the statin and start taking CQ10. More beneficial and less harmful. I’ve never heard of CQ10. Has anyone else?
It will NOT replace a statin - it has a role in heart failure but it won't reduce your cholesterol. If you do take CoQ10 it must be a high quality one - not from the local health shop - and in addition to your statin which is what has reduced the cholesterol. Stop the statin and the cholesterol will go up. CoQ10 will mess about with your BP so watch out for that.
And that lady in the health shop should be reported - she is NOT a healthcare professional and shouldn't be telling you to stop anything and replace it with something she is selling, not at all ethical. And as you say - cardiac arrests are really not something to mess about with!!
Excellent advice, as usual. I’ll stay with the statin until if and when the pharmacist gives alternative guidance. I’d like to drop to a lower dosage, 10-20mgs maybe. And keep a closer check on my cholesterol than before.
Having been through what I’ve been through. Here’s a solid round of applause for the NHS and staff at all levels.
Five years prior to waking up with PMR, I had to discontinue taking Simvastatin as it caused the exact same muscle aches (shoulders, hips, wrists, fingers). The symptoms disappeared within 30 days. But five years later PMR. I firmly believe Simvastatin caused my PMR. And would bet that most of us patients with PMR are either taking statins or have in recent past.
This might confuse you. But my opinion is different. I came off statins at the start of my PMR a year ago. I'm down to 7.5mg Prednisone now and back on statins. I've noticed no difference to my health, but if anything I feel better. I believe statins are helpful for me. They proveably drop my cholesterol from 6.7 to 4.2. There's lots of empirical studies out there demonstrating the benefits is statins if you care to get off the "statins are bad" bandwagon. The massive PolyPill trials in the UK the more famous.
Good morning,I stopped mine because I found it made me ache more and I would say I feel better not taking Atorvastatin but I still have PMR pain.
To be honest personally I would not take statins with my PMR. I have heard horror stories from others ( not on this site) when taking statins without PMR .
I would add that many professionals question statin use and the benefits anyway. I don't know the facts behind this but personally for me statins with our without PMR are a no no.
The bad stories tend to appear - but not balanced by people who had no problems. Many people, with or without PMR, manage well with them.
I am currently experimenting with just that. I was getting really bad lower leg pains so stopped for three months along with BP meds and now reintroducing the statin to see what happens. Will let you know!
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