Cholesterol, pred and PMR?: Hi. I recently joined... - PMRGCAuk

PMRGCAuk

20,321 members38,070 posts

Cholesterol, pred and PMR?

MamaBeagle profile image
35 Replies

Hi. I recently joined "Our Future Health" it's a project to get DNA profiles of 5 million people in UK , in order to get a detailed picture.of the nation's health...put in very simple terms. Joining involves completing a questionnaire and an appointment wher you are weighed, measured, BP, heart rate and rhythm noted and cholesterol check ked.

The guy said my cholesterol was up but not up enough to send me to doc.

Their info says to see a doc if total cholesterol is over 9 if you are over 30.

I'm coming up to 75 in June, my cholesterol test last year was 6.6.

This finger prick test result

Total 7.7

HDL 2.17

Triglycerides 1.94

LDL. 4.66

I'm now down to 5mg pred but have Neen on pred since October 2017. A year remission April 22 ro Apri 23 then 12.5mg from June 23 from then I've reduced successfully, no flares down to 5mg.

Is the pred involved in this rise. Is it age.

Now being very aware of my diet and cholesterol. Want to avoid meds at all costs.

Don't do processed food.

Any help and or advice very welcome.

Written by
MamaBeagle profile image
MamaBeagle
To view profiles and participate in discussions please or .
Read more about...
35 Replies
PMRpro profile image
PMRproAmbassador

Pred does tend to raise your cholesterol levels. 5,5 is usually taken as the top of the acceptable range for total cholesterol although having a very high HDL usually calms them down.

MamaBeagle profile image
MamaBeagle in reply to PMRpro

I thought ilthe total should be less, and certainly less than 9 before needing to report to docs!

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

Um, 9 is very high - they worry long before that! Not a lot of point worrying about dietary cholesterol either unless you eat a diet ridiculously high in fat - your liver produces the vast majority of your cholesterol in the blood and the pred increases that process.

MamaBeagle profile image
MamaBeagle in reply to PMRpro

Gotcha. Thankyou.

Blearyeyed profile image
Blearyeyed

I would say you should probably speak to the doctor because your total cholesterol is still pretty high , but more importantly your HDL ( good ) cholesterol is low and your LDL ( bad ) cholesterol is 4.66 which is in the high risk range , especially for those that may already have heart or blood pressure issues or over 65.You could choose to try plant sterols/ stanols and make some changes to your diet if you are eating a lot of foods with high fat ( even good fats at the moment) and high carbs, especially sugars or white carb foods.

Drinking more fluids and keeping active with some gentle walks and stretches among other things through the day will help improve your circulation and blood sugar regulation.

Increasing foods including soluble fibre , Vitamin B 12 , Folates and Vitamin D is also helpful to improve your metabolism and liver function helping your body to remove the cholesterol more efficiently.

You could choose to make these changes then get your cholesterol retested again in 2 months time to see if things have begun to improve with natural methods.

When you get your cholesterol test done it might be beneficial to ask your GP to check your Diabetes score, liver function, Vitamin B 12, Folate , Ferritin and Vitamin D as well as deficiencies in these can be part of the cause for poor cholesterol results.

But , if your figures , and especially the LDL cholesterol , are still high you will probably need medication to help , even if it is just in the short term.

Not all statins are the same , it's just the one they seem to want to prescribe first can cause more side effects. I personally wouldn't choose Atorvastatin.

I am on Rosuvastatin ( Crestor) and it doesn't have side effects like the other one did for me. There are also others that you can try.

You could find that in combination with diet and exercise you may not need to be on a statin long term , as you can request a further cholesterol test three months after starting it and may find the problem has resolved and the lifestyle changes you've made will be enough to keep it down. You can also have lower doses and work your way up instead of starting on the "average" dose.

I also have to take Ezetimibe because I have Familial HyperCholesteroleimia, genetically caused high cholesterol so I cannot reduce my figures with good diet and exercise alone.

FH is a very common but under diagnosed problem, you only need to have an LDL of 4.9 or higher despite having a good diet to have FH.

HyperCholesteroleimia because of medication use is also very common and if it occurs , and you can't reduce it with dietary and exercise changes, you will usually need some type of medication to reduce cholesterol putting you at higher risk of coronary artery disease in the future.

If you can't tolerate Statins, proven by trying a few different types, you can be put on Ezetimibe instead and it doesn't appear to give people the same side effect issues that some people get with Statins.

Statins do an important job for many people , including helping to reduce the risk of heart disease and helping to stabilise any arterial plaques in people that may already have arterial health problems. Much like steroids you need to weigh up the benefits to your long term health over the risks.

You definitely need to get proactive with a high total cholesterol and most importantly a high LDL.

First thing would be to request the GP to do a proper Serum Total Cholesterol blood test rather than just a finger prick test to make sure your result from the study was correct.

Take care , Bee

MamaBeagle profile image
MamaBeagle in reply to Blearyeyed

Thanks Bee. That's a really full and helpful reply. I'd already decided to ask for a test. I do 4 quite intensive aquafit sessions each week, so quite a lot of exercise. Don't eat white carbs....I'll post when I get some results xx

Indigo2417 profile image
Indigo2417 in reply to Blearyeyed

Don’t want to hijack this post, but very interested in your information about statins. My husband is on statins due to high cholesterol and has been put on Atorvastatin. Is there anything for us to watch out for with it?

Blearyeyed profile image
Blearyeyed in reply to Indigo2417

Some people can have joint or muscle pain, tingling in the hands and feet, constipation and IBS or general fatigue it is more common with that statin , but it is the most prescribed type so people reporting side effects are more common.I did find I had a number of those symptoms so I changed my statin and don't have the issue on the Rosuvastatin.

Indigo2417 profile image
Indigo2417 in reply to Blearyeyed

Thank you. He does have occasional constipation, but hasn’t complained of muscle aches. About 14 years ago, he had a blood test and his cholesterol was 8.4, so he was put on Simvastatin. We also adjusted his diet. After a further 3 month blood test it had gone down to 4.7. He was complaining of muscle aches then and after a couple of years, he told the Dr that he wanted to stop the statins. He’d read negative reports in the Daily Telegraph. He stopped the statins, but requested blood tests at the surgery every year or 18 months and his cholesterol hovered around 5.6. He didn’t get any during Covid and when he next asked for a blood test the Dr wanted to know why. Luckily, we’d made notes of his test numbers. The Dr on the phone call didn’t seem to be aware of his history, so got full bloods done. I can’t recall offhand what his cholesterol was then, but they automatically said he should go back on statins. So, he’s been on Atorvastatin since then. Will bear your information in mind in case he needs to ask to try a different one. Thanks again.

Blearyeyed profile image
Blearyeyed in reply to Indigo2417

he could get mild symptoms like occasional constipation or muscle aches again , but he needs to weight up the benefits against the risks , and he sounds like he definitely needs the medication especially if he has changed his diet and the numbers keep rising.One way to reduce the side effects is by making sure you drink the recommended amount of fluids each day, part of the reason statins cause stiffness , aches and constipation is that more water is used by the body in cholesterol removal so you can be internally dehydrated even if you don't feel thirsty.

Moving about for a few minutes each hour stretching and strolling also help to combat the Fatigue , Stiffness or Nerve Tingling and helps to reduce how often constipation occurs.

The press about Statins has caused a lot of Anxiety about using them which is very unfortunate for those whom genuinely need the drug to improve their health because finding the right Statin can make a big difference to a lot of people.

Indigo2417 profile image
Indigo2417 in reply to Blearyeyed

We do drink quite a bit of water. More in the morning than in the afternoon, but we have other drinks as well. Don’t drink quite so much evenings as the need to keep getting up in the night interrupts sleep. He’s on medication for slightly enlarged prostate. Until about a year ago, we were walking about 1.3 mile round trip to the village shop every day for the paper, but the shop has now closed. We do still try and do a regular walk to the village, but that has been a bit hit and miss lately with my PMR and currently back strain. When I get a bit more mobile, we both want to get back to the walking and doing some light exercises that we were doing up to last year. He hasn’t had a further cholesterol test since going on the statins, so we don’t know what it is now. I think we will have to proactively ask for another test. I get the impression that it won’t get monitored unless we ask for it. We are both conscious of looking after our health and fitness.

Blearyeyed profile image
Blearyeyed in reply to Indigo2417

Definitely, you often need to ask for the tests they are pretty swamped with workload these days so monitoring tests can get overlooked but they are usually happy to do them when you ring for them.

Indigo2417 profile image
Indigo2417 in reply to Blearyeyed

Will do.

Bluey-1 profile image
Bluey-1 in reply to Blearyeyed

Me neither so far with Rouvastatin. The 80mg Atvorstatin (following a TIA/ high cholesterol) sent my bloods haywire. As you describe Bee, I have been put on 5mg of Rosuvastatin and lipids will be tested end of April and then the amount reviewed.

Koalajane profile image
Koalajane

If you are a type 2 diabetic it is preferred that your cholesterol is in the 4s as diabetes holds more risks, they also like to see blood pressure lower than people without diabetes

MamaBeagle profile image
MamaBeagle in reply to Koalajane

My blood pressure is normal and I don't have type 2 diabetes..but I'll be making an appointment for doc to ask for bloods. Cheers KJ

9lives profile image
9lives

hi

I’m glad you posted this as I’m interested in the comments. I had a recent appointment with GP and they tested for cholesterol and my blood test was 6.5 , so they called me in and did a medical check over including blood pressure, which is normally low, but on the day was higher ,( due to being at Dr. ) and family history which put me at 13% of risk , over the the 10% risk factor . They said normally people of my age(71) are between 15%_20% over and they would automatically put them on statins. The GP has suggested I go on statins but I’m a bit reluctant, I am quite active, yoga weekly , walking regularly and running a boarding Cattery keeps me fit. GP said that long term steroid could contribute. I was diagnosed in 2016 and initially put on 20 mg then down to 15mg and then the rest is history, as they say.xx

I’d be interested to see how you get on, so keep us updated.

Carole x

MamaBeagle profile image
MamaBeagle in reply to 9lives

Hi 9lives! Interesting. My bloods last year said 16% chance. No action taken. Assuming risk factor for developing cvd increases with age. I've got a telephone consult this evening

9lives profile image
9lives

aww let me know how you get on. GP wants to see me again in 6 weeks .

We shall see

Xx

MamaBeagle profile image
MamaBeagle in reply to 9lives

⁷Hi, well result of Tel consult is - I can book for full cholesterol test next week. BUT I also asked for 2.5mg tabs on pred so I can more easily taper down from the 5mg I'm on at the moment. He was adamant I must taper by 1mg each time !!! OUR GUIDELINES SAY SO!!!Result of that is I'm having another conversation with doc who prescribed initially. I explained the lower and slower. He was having none of it.

I haven't bothered the doc since she prescribed initially. It's my second dose of PMR and it has been plain sailing up till now!

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

OH $%£ - none so blind as those who will not see!!!! Guidelines are just that, ONLY guidelines - so say the doctors when it doesn't suit them to follow them like doing a dexascan ...

9lives profile image
9lives

gosh , well he says it is “guidelines”, that means guidelines only, in which case it’s not set in stone. And our bodies all react differently.

If I were you I would stick to the DSNS taper, which recommends no more than a 10% reduction. And try to speak to the initial doctor, as you say, and see if you get her to agree the slower taper. At the end of the day it is your body and your choice.

I’m very lucky my usual GP lets me get on with it, but if I happen to see another GP or Locom then they start telling me I should get off the steroids. One even said why have I been on them so long ! I replied “ if the PMR is still active, then I need the steroids.”he didn’t argue xx

I’m down to 1 3/4 now, and going very very slowly xx

So hopefully getting there.

I think we know our bodies better than Dr.

Good luck with the initial DR appointment that you have lined up, hopefully she will listen to you.

Carole x

MamaBeagle profile image
MamaBeagle in reply to 9lives

This time round I started at 12.5 I haven't made a sudden 1mg drop since I started reducing. I've gone down by 0.25 a week so 3 weeks before arriving at next dose. Now I'm down to 5 I was trying to explain to him that it's not a good idea to make immediate 1mg drops. But guidelines aka rules in his eyes said no. All I wanted was 2.5mg tabs in place of 5s😡

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

Plain pred??? No problem, get a pill cutter. It IS cheaper for the NHS, plain 2.5s are expensive which is why you often end up with e/c 2.5s as they are, paradoxically, cheaper ...

MamaBeagle profile image
MamaBeagle in reply to PMRpro

I've got a pill cutter. It struggles with the 1mg tabs. But if they aren't quite even then over a couple of days I reckon I get the right dose. Yep plain tabs

MamaBeagle profile image
MamaBeagle in reply to MamaBeagle

Wish I'd let that sleeping dog lie!

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

Down to 2 it isn't a problem - cut a 5mg and add 1s to get the half mg dose.

MamaBeagle profile image
MamaBeagle in reply to PMRpro

👍 gotcha xx

9lives profile image
9lives in reply to MamaBeagle

As others have said a pill cutter can help. I got mine from the vet, does a good job 👍 good luck to you , xx

MamaBeagle profile image
MamaBeagle in reply to 9lives

👍yep. Got one. One of the first things I got when I joined this forum and the charity in 2018. Told the doc this but he was already in the stratosphere when I told him🤣

MamaBeagle profile image
MamaBeagle

And when I mentioned cutting tablets he went into orbit!! English is not his first language btw. I did have difficulty explaining things to him.

PMRpro profile image
PMRproAmbassador in reply to MamaBeagle

I hate that. If a patient doesn't speak English they get an interpreter. But if I as a native English speaker can't understand a foreigner's version of English, I would be called racist.

MamaBeagle profile image
MamaBeagle in reply to PMRpro

Totally 👍

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to MamaBeagle

Q.. Then why do they have an indentation across the middle?

A. . The line down the middle of a pill is placed there by the medication's manufacturer to show that the pill can be split in half. This groove or indentation is called scoring. This imprint also helps with splitting the pill because it shows you exactly where the halfway point is.

PMRpro profile image
PMRproAmbassador in reply to DorsetLady

Not all pills have them. But an interview with manufacturers about this idea that you can't split tablets because the active substance isn't evenly distributed throughout the tablet resulted in a degree of hilarity! They said that ALL tablets are made using the same mixing process and that is designed to achieve an even spread . Bit like making a cake - doesn't take much mixing to get the stuff even does it!

That said, you must not cut or break enteric coated tablets or certain types of capsule or tablet which are designed to be released over a long time. But it always says that in the PIL.

If you can't cut solid tablets safely, most of Europe is in a mess!

safemedication.com/pharmaci....

You may also like...

Beginnings of PMR or Pred withdrawal?

achey...nothing major although one rotator cuff is very sore. I’ve been out tackling the wilderness...

PMR Shingles and tapering pred

reduce the pred again. Very slowly this time. Can anyone tell me, is it too soon? Is the pred...

Pred withdrawal pain or PMR?

sure if it's Pred withdrawal or PMR pain. It only comes on in the afternoon. If it is Pred...

The journey on the other side of PMR/pred?

4 years of PMR/Pred., Currently I'm taking, on alternate days, 1/2mg & 1/4mg of pred., (I got here...

PMR - Pred doses and best timings

differences in the symptoms. I started on 15g a day Preds and have just been advised to go to 20g...