I've been reading past posts about the problems people have been having with Statins. After resisting them for years I finally gave in and accepted a prescription for Avastatin just a week ago because my LDL cholesterol reading was high on last blood test. Day one fine, day two terrible leg pains, especially at night, but that's not unusual for me.. now, one week on and I'm practically back to square one with PMR symptoms. I have decided to stop taking the statins immediately and I'm taking plant sterols instead. My question is has anyone out there tried any of the pharmaceutical alternatives? Having read up on them they also appear to have side effects ( like most drugs) I'd like to know how others have dealt with this problem. Thanks in advance for advice.It seems ironic that having to take steroids for our PMR raises our bad cholesterol but treatment to lower it gives us crippling muscle pain and stiffness, so a bit of a Catch 22 situation.
Statins (again): I've been reading past posts about... - PMRGCAuk
Statins (again)
Have you seen DL's post today about alternatives? She obviously heard your call!!
healthunlocked.com/pmrgcauk....
As I say there I can't cope with statins - I was started on Ezetimibe with no problems at all and got an acceptable reduction in cholesterol and I asked my rheumy about adding bempedoic acid - the cholesterol is right down now. He dealt with it as much of the problem is due to me being on tocilizumab/Actemra which raises cholesterol. Only one of the medicine doctors who also does some cardiology made a fuss about it, the real cardiologist never did.
You may need to "fail" a couple more in the UK but it shouldn't take too long. My first statin almost had me in a wheelchair after 10 days. The second time I was absolutely fine for about 3 weeks and thought it might be OK and then I had a sudden massive flare of back pain which always heralds a flare of PMR for me. I wasn't going to risk it and stopped the statin.
Thanks for speedy reply! I've read up on Ezetimibe so may ask Dr to let me try that.Pleased to hear your cholesterol is right now.
I had problems with statins years ago so am now on Ezetimibe . The only side effect is a bit of wind which I can cope with.
You would be better trying a Statin which you haven't taken before , especially as you have had side effects on Atorvastatin in the past.It is the Statin with the most early side effects.
Rosuvastatin , begun initially at a low dose then increased to the dose your GP recommends over a month is reported by patients on all different health forums as the Statin they changed to , and the Statin with caused less , or no side effects long term. You can ask the GP to swap you to this Statin whether you have already begun to get side effects or not. This medication also has the brand name Crestor.
There are also two other statins to try , and you need to try at least three before the GP offers you cholesterol lowering Statin alternatives in the UK.
It is also important to keep yourself hydrated , and have your nutrients checks if your are taking long term medications that affect stomach acid and vitamin absorption like steroids, PPIs , antacids , statins , and various nerve pain medications like SSRIs and antidepressants to make sure you do not become deficient or insufficient in things like Vitamin B12 , Folate , Ferritin/ Iron and Vitamin D ( even if you have a good diet or take oral supplements).
It's usually better to get a baseline before you begin any of these medications, but you should get them tested every 6-12 months with blood tests by your GP to ensure your levels have not slowly decreased.
Insufficiency and not just Deficiency in these nutrients increases the chance of getting side effects on medications or are the root cause of the symptoms you get.
You do need to get results of your blood tests , as a GP tells you , you are normal if your ranges are very low normal or borderline but that is a sign of Insufficiency which causes symptoms like pain and fatigue and needs improving by a combination of diet and possibly supplements that are absorbed via the mouth to improve your overall symptoms.
Plant sterols and plant sterols , along with diet changes can help reduce cholesterol, but they are not as consistent or effective in doing that as taking pharmaceutical options , and do not protect against the build up of arterial plaques or help stabilise any plaques you have in the way statins do. Recent studies have also proved that Statins are helpful in delaying and reducing the risks of Alzheimer's and all type Dementias as well as giving stroke protection.
There are some supplements that are cheered about by alternative health groups. I tried a one when I didn't realise I had a very common genetic cholesterol condition, Familial Hypercholesterolemia, which meant such things don't work. In truth, those things may be sold over the counter , but they can have equally unpleasant side effects and often interact with many essential medications for various medications with out the statistical evidence that they work consistently, even after testing.
Not everyone can tolerate statins , but it's worth trying the various options and lower doses if they are recommended for Preventative Care for your health conditions before giving up on them entirely.
I had a rheumatologist who had a theory that taking pred and statins together was not a good idea. It was purely based on his own experience. He had some theories about it, but it was not based on any scientific information.
As PMRpro say, telepathy… I cannot take statins, so am on plant sterols… have been for about 3vmonths, will let you know if they are doing anything when I have my annual check up next month…😊
Good luck when you have your check up. I managed to get mine right down with p!ant sterols in the past but Steroids ( and perhaps not being as good with my diet!) have pushed it up again.
Hello DorsetLady hope you are well.
I am on plant sterols and during my blood tests it showed my cholesterol has risen a little but my doctor has said to continue and he will check it again later for me.
I have read all the above on Statins and don't seem to be able to determine if my problem is from Crestor or LVV & GCA.
Presently I'm on 9 mg Prednisone (down from 60), weekly Actemra and the Crestor was prescribed March 2024 (also have other meds but I know they wouldn't cause my problem). Everything seemed to be fine until about November 2024 when I began having terrible leg cramps at night, with some lasting 10-15 minutes and the leg being sore 2-3 days. I will be seeing my family doctor at the end of January and will bring this problem to him - but "how say you" - I'm thinking Crestor but could it be the LVV.
Oh, I do not have high cholesterol - it was prescribed because I have a 50% artery stensis. I argued to no avail - the Doc. said it was a democratic country so do what you want. He is a really good Cardiologist to thought I'd better take the stuff. Look forward to your replies.
Thank you.
Hi what other meds are you on from cardiology- and any stents? I don’t have coronary issues but late hubby did- and plenty, unfortunately.
Did leg cramps coincide with anything road -change of meds, change of dose?
Hello Dorset Lady: The reason I was referred to a cardiologist (by the way a very nice UK Doc) was in 2023 I felt that my heart was jumping out of my chest - he advised after all the tests that heart if fine but it was the carotid stenosis that he was concerned about and said I had to take Crestor. No stents etc. The only other meds I take and have for years are synthroid, calcium, Vit D,K2 and as of August 2024 81 mg aspirin which the hospital ordered when I checked with an eye problem which my Rheumy called Amauraosis right eye (that was a few minute episode and all is fine). When I saw my Rheumy in Sept. so she ordered a Pet Scan which showed the LVV & GCA again (had been cleared as of January 2024). I've also been to a Stroke Clinic and that Doc didn't think I had a stroke. Over the years I may have had night leg cramps i.e. once a year or so but now it seems to be a nightly thing.
I would try magnesium - doesn't have to be supplements though they are easy, you can get creams, oils, and add Epsom salts to a bath or do a foot bath with them. Low magnesium in the muscle cells is a common cause of cramps. If blood magnesium is normal it doesn't mean the muscles aren't a bit short as blood tops up from body stores.
Amaurosis fugax is merely the medical term for fleeting loss of vision - it is the name for a symptom, not the cause. It is one of the symptoms listed for GCA so if it happened in August and the PET-CT in September showed GCA/LVV again that fits and really should have elicited more concern.
Hello: I forgot to list Magnesium in the meds to Dorset Lady, I do take 300 mg a day (my calcium tablet has 300 mg, 150 mg mag and 5 mg Vit D plus I also take 1000 Vit D daily). I also eat bananas and apricots every day. Should I have more?
You wouldn't think you would need more would you in that case. Hum.
In that case I think I would try and get the GP to do some basic blood checks - electrolytes, calcium, vit D if they will do it just in case.
Do you space apart your magnesium and calcium by at least 2 hours or more?, as they compete with one another when taken together.
She says they are in the same tablet ... Though you are quite right.
The tablet I take has 300 mg calcium, 150 magnesium and 5mg Vit D. I take two a day with food and taken 4 hours apart.
The calcium and magnesium each need to be separated and by 2 or more hours when taken as they will cancel each other out when taken together and could attribute to why you are getting muscle cramps even though you are taking magnesium.
I have been taking this tablet for at least 10 years with no problems.
You are 10 years older and the body changes (i.e. metabolism and disease occurrence). What worked before doesn't necessarily mean it works now. Also, OTC products are not regulated like pharmaceuticals so perhaps that magnesium, calcium, and Vitamin. D formula of the tablet has changed.
Hi, I had raised cholesterol levels on a blood test 18 months ago & read …on here I think!…that plant sterols & psyllium husk help reduce the level. Rather than take statins, I gave them a try, & yes, my levels reduced after 6 months. Another friend had the same positive results.
Hi kitty, have to say GP wanted me to take statins but I made my point about side affects so he left it to me was up at 6.8 And with diet got down to 5.3 and went to bakers and bought a huge bun and enjoyed every bit but so hard having to watch everything you eat, having porridge a lot and and plant based yogurts and a lot of sprouts and fruit but gets really depressing watching everything you eat and hate to say no butter or cheese except when on holiday, did get pills in health shop but after reading about them thy went in bin, so it's hard and I hate it, thing is IAM very slim and don't want to cut dairy out because have to thing of the bones. Take Care and good luck, H
Hi
A vegan diet has no cholesterol, so there’s none to lower.
The liver makes all the cholesterol we need, all the different types, in the exact quantities we need.
My total cholesterol is 2.8.
All the best.
Persevere - 34 years vegan
In many cases the high cholesterol is due to the liver producing too much, especially when you are on certain drugs that increase it, irrespective of diet. For most people it is next to impossible to reduce the cholesterol by dieting except by adopting quite extreme diets that they find hard to maintain.
my OH had very high cholesterol and, of course, the medics wanted him on statins. He refused and said he would lower it with diet. They gave him TWO MONTHS to come back for another blood test. He did it. He used the cholesterol lowering spreads and drinks and gave up his beloved cheese and ice cream (oddly he has always been very slim!!). To this day he still has the spreads and drinks and has been fine ever since.
I could not tolerate statins at all and was prescribed Ezetimibe instead. I have had no side effects at all.
Hello,
This will enrage some, no doubt, but a youngish GP once told me that a glass of beetroot juice before each main meal blocked fat absorption in the same way that statins do, and was “almost as effective”. There is quite a lot of scientific approval of beetroot, I believe, in the lowering of cholesterol. I mean to remember to have a glass daily, but forget… it’s also not cheap. But I have always resisted statins for reasons of the commonly held objections.
It might be that you are absorbing too much cholesterol. If that is the case zetia rather than statins or sterols is the way to go. When synthesis goes down absorption goes up so statins can make the situation worse. Blood testing for phytosterols is available at the Boston lab in the US.
I could not tolerate any statin. Over the years I tried all kinds of things and nothing worked. My doctor offered me Zetia. I have been on it for 3 years without any side effect. My HDL and LDL went down.
I have a long history of statins and looked into alternative medicine, but after reading the leaflet it’s not a good idea to use them before speaking to your doctor.
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