As some of you know, as youve replied , in the past few months I feel my situation has deteriorated quite significantly . At first I though it was adrenal insufficiency , but since my most recent flare , Ive been on 13mg pred. for 2 and a half weeks , and the symptoms havent changed
Symptoms are awful , extreme fatigue after effort , feeling wired , wobbly legs sometimes . Digestive issues .
Steroid induced muscle myopathy is something thats been suggested by others on here.
But yesterday I was talking to a friend about having to take statins as the pred had increased my cholesterol and sugar levels for the first time in my life ! Ive been on Avortstatin 20 mg for approx 6 months now .
He was telling me about the high percentage of persons who have side effects on statins . and given the way I`m feeling I wonder ?
I have just got some high quality Plant Sterols and am wondering whether I should give these ago instead . Has anybody come off Statins here and does it have to be done gradually ? Any info would be very helpful !
As can aside still can`t get to see the GP, never seen one in the past year since moving here . so on weds (once roads are free from snow ) I`m ringing in as an emergency . its a pathetic situation . as this first goes to triage , then a clinical practisioner will try to deal with me by phone as has been the case in the past . only if I managed to pass that test in terms of being bad enough might I get to speak to a doctor ! Im in Rural Wales, is the rest of the country so bad ??
Finally a bit of good News . I`ve stopped drinking alcohol . As it was too much and I couldn`t seem to moderate it for any lenghty periods . Thank you to everyone who encouraged me .
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Marek1
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I must admit if I were in your shoes I would just stop the statins for a while as a trial and see how I felt without them. I am sure I should not suggest it though!!
"Hi I`m here almost weekly!! Apologies!" Some people are here a few times a week - wouldn't be much of a forum without people being here daily!! No apology needed.
Much of Wales is pretty dire I fear - especially the rural areas. Apparently the rural idyll doesn't appeal to enough GPs or specialists.
You can stop statins just like that, No-one can force you to take them There are alternatives - not only the plant sterols but also other medications. I had problems with 2 different statins - I don't live in the UK but there was no problem about trying something else.
There is a deal of sense trying stopping the statin for a time - if the symptoms and wobbles improve, you have an answer. What you describe is similar to what I experienced with the first statin I tried - after about 10 days I felt very weak and wobbly and the slightest uphill was simply too much. Adverse effects can appear at any time - not just at the outset.
No - after the second attempt which was followed after about a month with a big flare it was left. Then I was put on Ezetimibe which took it down a fair way and with bempedoic acid added it is really low. I am on Actemra/tocilizumab and that also increases cholesterol so it was very high. Even I was getting a bit itchy about it and I have never entirely agreed with the cholesterol story which was originally based on some dodgy studies.
If I was that desperate with no answers or support I’d be trying it for a few weeks. Some people can feel vile on them. It is your body, your choice. These are taken to increase odds in your favour of no cardiac event and it is your choice to weigh up the risk/benefit balance. It sounds like the unknown benefit (in your case) is not sizing up well to your current predicament. No doctor can tell you if it is this that is doing it but they might want to do a creatinine kinase blood test if you ever see one if you’re still on it. You can stop them and restart.
East of England is a mud bath with grey skies. Had a blizzard for a few hours in the night but by morning you wouldn’t know. It was -2C and then by lunchtime it was 13C.
Have you had basic blood tests checking your nutrient levels and full blood count in the last 3-6 months? Which Statin are you on?
I ask , because although statins as a group of medications get a lot of bad press they aren't always the culprit , especially on their own.
Statins themselves , especially if you also take other medications over a long period like steroids, NSAIDs, PPIs and Antacids , and antidepressants or anti seizure medications (for Pain or otherwise) may not be the " cause" of increased symptoms but only "contribute" like the other medications do to causing nutrient deficiencies that are often the root cause.
The medications above , including statins but not exclusively, change stomach acid and over time can cause a depletion in the nutrients you absorb from food and supplements. Alcohol and caffeine can also add to the changes.
With long term use both steroids and statins can contribute to vitamin insufficiency, eventually vitamin deficiency or Anaemias which cause the serious symptoms of pain , particularly in the joints, muscle loss and weakness, numbness in the muscles , pins and needles and muscle neuropathy , difficulty thinking , Fatigue , exhaustion, sleep disturbance and more.
Insufficiency ( very low levels in the normal range) or Deficiency ( abnormal low results) of Vitamin B12 , Folate and then , in turn Vitamin D and Iron are very common while taking medications and cause many serious issues.
If you are over 60, changes in stomach acid and digestion that occur with age also add to the likelihood that you can have nutrient insufficiencies even if you have a good diet or take supplement tablets.
It is why people whom take medications for long term conditions , particularly steroids, statins and PPIs should be regularly tested according to NICE recommendations every twelve months to ensure nutrient deficiency is not occurring or to catch it before it causes severe symptoms and more side effects.
I would suggest that before you stop the statin, especially if you are taking it because you have familial hypercholesterolemia or for Artery protection rather than just to reduce cholesterol, you request the following tests from your GP on the NHS pointing out the NICE advice that everyone on these medications should be tested every 6-12 months as part of Preventative Care. You have the right to request them and you just need to point out to your GP that you want to rule out the simple issues like deficiencies or Anaemias before deciding about stopping your Statin or considering more complicated problems.
The tests that anyone should have are:
Full Blood Count , Ferritin/ Iron , Kidney Function (Electrolytes), Liver Function. Vitamin B12, Folate, Vitamin D , Total Cholesterol and Diabetes HbA1C.
Get a copy of your results as a GP will often just say things are normal but if you are at the borderline or lower end of the normal range this is still classed as Insufficiency and causes early symptoms. The Insufficiency needs treating simply with Diet changes or supplements to prevent a Deficiency occurring and to help improve your symptoms, rather than waiting for things to get worse,
If you aren't low or deficient at least it means many common causes for symptoms that medication can contribute to are ruled out.
If you are , treatment is simple , improvements can occur within weeks of the proper treatment and you can help prevent further complications or long term problems.
If you already take supplements you should stop them for 4-7 days prior to blood tests to get accurate results. As with all blood tests make sure you are well hydrated for days before the tests, so if your doctor or lab tries to use dehydration as the reason for abnormality you can point out this is not the case.
You can also consider which Statin you currently take.
Atorvastatin is usually the first prescribed option in the UK but this is commonly a cause of side effects , even in those whom have been on it for a number of weeks.
You could request to take another Statin which patient experience shows has less short or long term side effects like Rosuvastatin.
It is not likely to be a Statin intolerance in patients whom have been on the medication for months or years before new symptoms occur so not taking a Statin at all is counterproductive.
It is more likely that the Statin , usually in combination with use of other medications only contributes to certain other health symptoms occurring because of the overall long term effect on general health and nutrition that doctors sadly do not advise you about to prevent , like nutrient deficiencies , dehydration and other more simply avoided or treated conditions that can occur with the reduced physical activity that happens with a long term health issues.
After other causes are ruled out, and you've tried making adjustments to your diet and hydration , and you have tried other statins , it would then be time to try a trial of removing a Statin to see if it helps . Taper it over a couple of weeks , you will need to see if there is significant improvement after 4-6 weeks without the Statin to see it as proof that the Statin on its own was the cause.
I have Familial Hypercholesterolemia so have to take a Statin and Ezetimibe to control my levels because diet or just a Statin doesn't work alone with this condition. I take Rosuvastatin as Atorvastatin did cause me side effects within weeks.
If you have only been on high dose steroids for a few months or even weeks , that can also cause people a lot of the side effects and symptoms you are experiencing until the body begins to adapt to the change in chemistry of taking the medication and begins to recover. Things like Steroids Induced Myopathy are more often conditions caused by being on medication for a longer period of time.
Well done for quitting alcohol. Remember this positive change could also be a cause of your symptoms , your body is improving but sometimes improvements can cause rebound symptoms and pain, and long term alcohol use could have also added to nutrient levels being low. Just think about smokers, even occasional ones, after quitting they will often have weeks of coughing , breathing changes, weakness , headaches , exhaustion which for a time can make them feel worse as the body goes through the withdrawal. People whom give up drinking to much diet pop can also go through similar issues. It's surprising how bad food and drink withdrawal can feel over the first month without them.
I live in rural Wales so I know how you feel , take care , Bee
WoW . Thank you . a lot to take in ! Thank you ! I will as a start be asking the GP on Wednesday for those blood tests ! I do believe that most of them have been done 3 months ago but not all . . When I quote the NICE guidelines to him how do I pronounce NICE ? just so that I sound like I know what I`m talking about .
Ps no cholesterol issues in the family but low level diabetes in later years yes.
The meds I take are Pred . Omeprazole . Avortstatin . and Clomipramine an SSRI .
For supplements I take a Multivitamin and mineral , vit B complex ,Vit C , Vit D 200iu, Cod liver oil tablet , Calcichew .
I only stopped alcohol 2 days ago . The symptoms I have had ,have been most severe for the last month or so .
What's your diet like , if you don't mind me asking?And, are all of your supplements digested in the stomach?
You could find that you are in the healthy mid range of nutrients when you look at the copy of the results, but it's better to know so you can rule things out.
You are taking a number of the medications that do affect your absorption of nutrients slowly over time so it is a possibility even if you've been taking supplements.
You've also got a lot health changes going on at once.
You're body is trying to get used to a strong new medication and also coping with withdrawal from toxins so your body is under a lot of Stress getting used to all the change and understandably sending out the warning messages that it needs you to pace yourself slowly and have some rest while it's coping with the change.
Things like muscle pain , joint aching , feeling weak and wobbly are all common as you adjust to a medication like steroids or your body is fighting inflammation and trying to recover in the first few weeks of treating a new health issue.
It will feel new and you do look for signs for new sudden symptoms but often those symptoms are common and not always side effects of medication, or are side effects that will reduce , in the first month on a new medication or first month or two of treating a health problem.
Are you drinking the recommended amount of fluids each day?
This can definitely help.
Also look at your intake of other things , are you having too much salt , or too little if you've cut it out entirely, are you eating too much sugar.
Lots of little health changes and choices work together to help prevent medication side effects and help your body cope with the symptoms of your health condition.
Sometimes you do feel worse before you begin to feel better.
Hi Bee , Thanks again , I wont bother you more tonite . Except to say that my diet is good as a whole , I will look at the points you mention . One thing for sure Ive always always ate too fast . !! I guess that in itself can lead to inflammation .
I would like to add an endorsement to what Blearyeed said about trying a different statin. I found two different statins (atorvastatin and pravastatin) intolerable due to muscle pain in my legs. My cardiologist moved me to pitavastatin (brand name: Livalo) which I have been able to tolerate. My cardio said that pitavastatin is a water-soluble statin (as opposed to other lipid-soluble statins) that causes less muscle pain and other side effects than other statins, which I found to be true for my case. Livalo is pricey and not always covered by insurances; Zypitamag is an equivalent generic that is cheaper; and I am buying pitavastatin from a reputable supplier in India (this is the cheapest alternative I have found).
I’m on folic acid B12 and calcium all prescribed by my GP and never explained. I am on long term opioids due to pain of osteoarthritis which I was told I’ve had since mid 20’s which is now being discovered as RA and mixed connective tissue disease! Yes and recently put on statins when I started prednisone. You’ve excellently explained a lot. I’m going to stop my B12folic acid and calcium before my next set of bloods, see what happens.
Obviously, don't forget to restart your supplements straight after having the blood tests. Even if you are comfortably in normal range for the nutrients, you've been given them to prevent your levels slowly declining because of the effect the medications you need can have on those nutrients. If your ranges are good you're supplements and diet are clearly doing a successful job together. Take care , Bee
I had the same problem with statins. I believe I tried all but one. My cholesterol went very high for the first time in my life, as well as BP. Stopped with statins and felt much better. Did you experience brain fog, disorientation or forgetfulness? Just wondering. My BP this morning was 100/68 which it was a couple of weeks ago. This I find a little low and I am around 6 mg pred. Going into GP Friday. I want my cholesterol tested as well will discuss tapering off one of the BP meds. Also will try to discuss adrenals with her -again. I am a bloodwork to rule out things....she is not. Hope things improve for you Marek.
Hi Missus ! Thanks for reaching out . yes I`ve had brain fog for sure , and feeling all over the place , particularly when I`m out of sorts physically .
I will look at at a load of blood tests as suggested by Bee , and adjust diet if necessary B ut I think Statins may be going !! Thanks and good luck with the doc !
I wondered this too. My rheumatologist said I would have to come off statins for 3 weeks to see the effect. I've done this twice now. Nothing. Zip. Therefore the statins are not the culprit (in my case). I think they are beneficial, not problem that people make out.
My cholesterol, which had never been raised, except for the good one, suddenly went up and my doc was a bit worried. I had heard about something called a coronary calcium score and I asked her about it. She sent me for one. It’s not a blood test but a scan and in Australia, we have to pay for it. But, it shows the amount of “muck” in your arteries and provides you with a score based on that. If the score is below 100, then it is considered to be OK … no statins required. You may find that you do not have any build up in your arteries. My score was zero, so I felt very smug, and of course, no statins were prescribed.
I didn't get the calcium score - but the spare cardiologist here did do a carotid scan again. She is so rude - never speaks to the patient and grunted out an "it's clear" without admitting she found nothing there! Actemra sends cholesterol up - but I think I saw something saying it wasn't a cardiac risk in the same way. Who knows - but have no adverse effects and it keeps them off my back.
Correct. Apparently you're ok if it's clear, regardless of cholesterol blood results. The thing that amuses me is that, to get the total score, they add the "good" and the "bad" cholesterol results, and in my case the good sent the total up to six. Strange way of doing things. But all clear in the coronary calcium scan so not to worry. You sound fine, at least that's what they'd tell you down here. 🤞
There is a lot of. drivel talked about statins including their benefits, side effects and negative impacts......
I can't talk about medicinal or medical condition interactions but the fact of the matter is that long term statins in terms of mortality will add 4 days to your life span...Ansel Keys the infamous American doctor whose flawed world based dietary analysis and high level US government contacts promoted a low fat and high carbohydrate diet as the US and subsequent worldwide norm from where toxic vegetable seed oils and statins sprung and coloured the diet of many across the world and from which millions have subsequently died due to CVD
In my view and that of many of todays Cardio scientists and lipidemiologists , cholestrol is not the main cause of heart disease and high Total and LDL cholestrol numbers are not reliable markers of CVD. Cholestrol is in fact part of a clean up crew to overlay arterial inflammation(soft plaque) resulting from long term high sugar and processed carbohydrate diets...... and which ultimately results in arterial calcification.
For the layman or women the important blood markers from which decisions to take statins or not should primarily include lipid Triglycerides/HDL ratios(<1.5 or 1.0 ideally) Apo B levels and if family CVD history plays a part lipoprotein a(lipoprotein small a, a genetic CVD marker) - these markers will indicate the quality quantity of damaging cholestrol(small or large particles) and your propensity for arterial cholestrol build up.
The above is the propensity to, and not the causal factor of CVD which is most definitely high Sugar/Carbohydrates inflaming arteries and resulting in the migration of small particle cholestrol to the damage sites causing soft plaque in the first instance, which is unstable and prone to rupturing and causing arterial blockages(heart attacks), whilst the subsequent calcification of these areas(over 20-30 years or more) will stabilise the soft plaque and is much less prone to rupture.
The primary test to check if the above process has started (and assuming the above noted blood tests indicate a small particle cholestrol problem) is a simple carotinoid ultra sound scan (evidence of soft plaque formation, primarily for younger people(up to 30 or 40) whilst for older people a CAC scan (5 minute CT coronary artery calcification scan) will also indicate if arterial/coronary calcification has started and the degree of advancement from which subsequent treatment decisions can be taken.
Fundamentally dietary adjustment needs to be considered if your HbA1c blood marker is above 5.5, your fasting glucose above 85 --100 and you have high inflammation markers such as hsCRP(cardio inflammation indicator)....in addition insulin levels should be checked in parallel such as C Peptides or Fasting insulin which are often not raised by doctors despite the fact you can have good HbA1c and fasting glucose levels but high insulin levels leading to CVD and many other metabolic conditions.
I am not a doctor but having taken stains for the past 25 years based on an early, what proved to be a flawed cardiological evaluation by my previous doctor, and in taking an intense interest in my coronary health since, have found all my above infomation(which is public domain information) to be reflective of the current general medical jnderstanding and state of the statins/CVD paradox.
As always do check with your own doctor if any of the above information inspires your consideration or modification of your personal health choices.
Hi. Before I was diagnosed with PMR I stopped taking all the medication I was on in case there was a connection. That included statins, letrozole etc. There was no improvement. Pain continued and was relieved once I started on steroids. Hope that helps
I had a friend with whom I played tennis until, a few months after being prescribed statins, he could no longer cope with anything physical. He decided to stop taking them and less than a week later he was back on court. I really wonder about statins.
What an interesting read to your replies. I was on Simvastatin for many years without any given side effects. However a move to a different area my new GP changed to me to Atorvastatin as my cholesterol levels were not improving and they didn't like people being on one of the older drugs. I too feel extremely weak and wobbly in the legs, constantly exhausted and tired but put this down to them also insisting that I reduce my Prednisolone which I am doing very, very slowly and now down to 11 mg from 15. I'm sure they'll be wanting some more blood tests soon so perhaps I'll mention it to Dr beforehand. Like everywhere we have to go through triage system so all done online or over phone. Would love to be able to sit down with someone and go through all the ins and outs of all this medication I put into my system on a daily basis as I'm sure many cause other symptoms but on a positive note I'm still here! Good luck on your journey
Thank you . lots of similarities , Ive stopped drinking and allowing my body to settle . Yesterday was very unpleasant ! And then try a break from the statins . Its bad enough having the PMR but the horrible fatigue and feeling wired are really tough to deal with
Well done for kicking the drinking, Marek1. I guess that will make you feel different too, so maybe this is not the moment to stop the statins.
I was living in Wales when my PMR was finally diagnosed and like Ana-16 I suspected statins to be the cause of the stiffness and pain. My doctor didn’t have a clue and prescribed increasing doses of pain relief without improvement before finally testing for inflammatory markers. He then started me on 50mg ! of pred with a very random tapering schedule. I’m guessing he took advice over the phone and heard wrongly. I suffered a flare after eight months of his tapering schedule.
That was in 2017 and I have resisted statins ever since because a couple of brief trials made me feel really unwell. Now the Lipids clinic have caught up with me and investigating my familial hypercholesterolaemia prior to starting treatment. She is running a DNA screening and talking about an injectable drug. I am nervous about introducing any new drug as I have found my PMR reacts badly.
Can't comment on your PMR situation but if your doctor is investigating family hypercholestrolae.ia and has not raised lipoprotein little "a" testing change your doctor. "Lipo a" is thee geneticly linked deadly serious form of cholestrol and if high there are only a limited nu.ber of new drug treatments to reduce it...lipo a levels are established by genetics in infancy and whether high or low remain essentially fixed for the rest of your life. If high you need treatment as this is not tested for in standard lipid panel testing. The other non genetic dangerous form or cholestrol is Apo B and again is very damaging form of cholestrol in terms of CVD but can treated with drugs and/or reduced by dietary adjustment away from sugars and processed carbohydrates.Both of these can be detected by simple blood tests but many insurance companies will not pay for these tests as they are not standard blood work tests.
Thankyou for this information. I meet the chemical pathologist next month in clinic and expect her to explain her findings and start treatment. This is the first time that my high cholesterol has been taken seriously ( I am 67 years of age) and with no history of heart failure in my family there has been no further investigation, just statins and later ezetimibe prescribed. I haven’t taken either since 2017.
I have had a lot of unwelcome medical findings in the past 12 months including a pituitary adenoma and blood paraproteins so I haven’t been too keen to know anything more about the hyper cholesterolaemia. Ignorance is bliss, they say. But I’m grateful for your input. Thankyou
Hi Marek I also had a lot of leg pain which I couldn't identify. It was mainly in my lower leg outer shin/calf and started just under my knee. Really sore and almost pulsing. I couldn't tell what was causing it so I stopped stations and blood pressure in fact everything other than pred to try and see what was what. Then in June I tripped and broke my hip and was given a high dose of vitamin D. I also got a lot of rest and the pain went away. I thought that it might have been low vitamin D causing the pain. I reintroduced the statin and all seemed fine till recently when I overdid walking around before Christmas. Caused a bad resurgence of pain which has now gone away. I had just reduced my dose of pred from 3mg to 2.5mg. I went back to 4mg and rested as much as I could. It all feels much better now. Perhaps you could check your vit D levels but if in doubt drop the statins for a while to see what happens. But only change one thing at a time I would say
When I was diagnosed with PMR about 6 months ago my GP said stop the statin immediately! I had only been taking then for a couple of weeks but she said definitely don’t take them. as they can make muscles worse.
BTW this describes my symptom’s exactly without statins
'Symptoms are awful , extreme fatigue after effort , feeling wired , wobbly legs sometimes . Digestive issues' .
Just taking 17.5 pred - and all the other meds to protect stomach, bones etc. and now high BP! all caused by pred.
Have you had your glucose AND insulin blood levels tested .....Also your white spots suggest calcification and a full body CAC(coronary ,calcium scan ) will identify the degree of any plaque and calcium build up in your general main arteries also.
A carotid ultrasound will also give a good indication of further calcification.....both this and/or a CAC scan are simple quick tests which will help your doctors better understanding of the extent or absence of a more widespread problem.
I guess the NHS may not cover these but they are very worthwhile to ID any problems and get appropriate treatment.
Yes - have all the same symptom you describe - GP says it is the pred - plus side effects from all other meds that are supposed to be protecting my body!! I now can only walk with a stick - and constantly exhausted. Also have repeated stomach upsets. And really shaky. Good luck! I hang on the the thought that it will go - eventually
Statins and sterols can make your situation worse if you are absorbing too much cholesterol rather than producing too much. Zetia is a better choice for high absorption cases.
It is true that pred may increase total cholesterol number, but it is important to do complete test and find out which component of cholesterol has increased. In my case, I tracked cholesterol for years, so when rheumatologist mentioned statins because of higher cholesterol , I asked him to investigate further. It turns out that pred increased HDL ( good cholesterol ) and that pushed the total over the suggested limit. It would have been not so smart to take statins because of the higher HDL :).
I am in Wales too!. Diagnosed with PMR and GCA in July 2024.
I was presecribed statins in 2020 and after taking them for 2-3 months I lost all strength in my muscles and had to use all fours to get up stairs. Dr tested my bloods and I had raised CK (creatine kinase) levels. This is an indicator of muscle myopathy and I was advised not to take any statins as this can become serious. My muscles improved dramatically after stopping the statins within a week or so.
my wife (Mrs GnT) has relatively high cholesterol & was put on statins. She reacted badly, pains in the legs, jumping out of bed in the middle of the night & walking around. She eventually stopped then after discussions with the surgery and she is fine. Her cholesterol has risen slightly just over 6 but not terrible and she is much better in herself.
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Could these be Pred symptoms?
GP diagnosed pmr before bloodwork done
Could this be GCA?
