Hello. I’m new here, but have known most of you for the last year! I’ve been very lucky to have had all of my questions answered just by finding the posts on this site - and I am grateful that people have shared their stories and experiences and given encouragement and sympathy to those who really need it....and with much humour - I’ve had many a chuckle! So, I thought I would join you all and maybe my ‘journey’ could help others - who knows? To put you in the picture - I started with PMR on New Year’s Day 2019, well in the night actually - I woke up not being able to move a muscle....scary! And the pain....it was unbelievably bad - as you all probably know. Luckily I had a good friend who had been through this and told me what I’d got, so off I went to the doctor to share all this information, was put on 15 mgs of Prednisolone and life has altered to what it used to be. I’ve had to find information for myself, with the help of books and forums like this, and have tried to accept what it is and just got on with it. I’ve gradually tapered the Prednisolone to 9mgs, no flares and pain is controlled. However, which brings me to my appeal for help, I was asked to go to the surgery for a blood pressure test and I requested a cholesterol test at the same time as I hadn’t had one done since July 2018. I wasn’t concerned as the last test was ok, and I had got a very healthy diet so wasn’t expecting the shock of being told my cholesterol was 7.5 and worse, the triglycerides were 5.4. - very worryingly high! They were 2.9 in 2018 and I thought because of my healthy eating they would be even lower. It looks like it’s the Prednisolone that’s to blame! My problem is the fact that I have had a bad reaction to statins and I also have a reaction to the fillers or additives that are in tablets. Has anyone got any advice on how to lower triglycerides without statins? I’m having to take D3 and K2 as an oral spray because of the reaction to the tablets, but I take Omega 3 oil capsules and have no problems at all. Sorry to ramble, but all advice would be gratefully received!
Advice on cholesterol please: Hello. I’m new here... - PMRGCAuk
Advice on cholesterol please
A few questions that might help us , help you .
Have they discussed any other options with you apart from Statins at the GP as you are already eating a healthy diet?
Did they suggest that you come in to do another fasting test in a few weeks time , just to ensure there wasn't an issue with the results or wether they may want you to have any other checks?
When you say Healthy Diet , could you give us some more details on the common foods you eat , just in case it might give a clue to some causes for higher cholesterol that may be being made worse by the effect of your steroids?
Glad the forum has been of help so far and hope we can be of help to you with your specific question 😋😁
Hi, thanks for your reply, very much appreciated. Yes I do have to go back in 10 weeks for another blood test. In the meantime, the nurse said, cut down on eggs and cheese. If only it was that easy!
Because of the problems I had with statins and amlodopine in the past, and when I decided that enough was enough and stopped taking all medications, I looked to changing my diet to see if that would help. It did. I didn’t need to make too many changes as I’ve always liked healthy food, so it only needed a few tweaks. Consequently my blood pressure was back to satisfactory, my cholesterol was also satisfactory but the triglycerides was a bit slow to come down, but it was coming down so I was happy with that.
I enjoyed reading about foods and nutrition, and easily cut out all processed stuff, reduced any sugar ....which wasn’t much anyway , cut down on some carbs and upped the fruit and veg, and took Omega 3 fish oils.
The triglycerides at my last test in 2018 was 2.9 , which isn’t low but still satisfactory. Then the PMR arrived in January 2019. After 2 - 3 months of feeling terrible and having no appetite and losing quite a bit of weight ...which didn’t look good, the steroids kicked in and I slowly started to feel a bit more human. My diet got even more healthy - I buy online organic foods, go to farmers markets and buy local produce. I try and have something from each food group and believe that a little bit of everything does you good! So I honestly think that my diet has got nothing to do with this huge jump in triglyceride levels. Also I would worry about cutting out dairy as I don’t take a calcium supplement (tried to but the tablets did what they always do), and the rheumatologist told me that I should be able to get enough calcium from my diet.
As a matter of interest, while I was trying to find out if the steroids were to blame, I read that it was possible that high cholesterol could occur after only 2 weeks of steroid use. Unfortunately I haven’t had any tests until now, so don’t know if that could have happened to me.
I did find a bit of information though - a high dose of fish oil....I take red krill oil, high prescription dose of niacin which can have nasty side effects, and Fibrates which I was given to try and put me in bed for 2 days after only taking 2 tablets!
Maybe it would be better to have the high cholesterol than go through the pain and discomfort of taking unpleasant meds?!
It's swings and roundabouts , you sound very much like myself , I changed my diet years ago to cope with other health issues but my cholesterol has shot up.
Have they also checked your Vitamin D levels?
One thing I noticed was my Cholesterol spike seemed to come in a pattern with my more severe drop in Vitamin D and low Calcium. Reading some research over the last two years there can be links with these. Has your GP ever looked into finding a way to give you these supplements without the use of tablets?
I will start having a look around and let you know what I find in PM.
Do you eat alot of nuts, pulses and beans in your diet ?
These can often have more effect on your cholesterol that dairy products for some people.
The other thing to think about is finding out if other people in your genetic family also have higher than normal cholesterol despite having a healthy diet.
It may be worth seeing if other relations have issues with cholesterol , if there is some familial nature to it it could make the effect of steroids on your cholesterol more exaggerated too.
Glad you found us I'd be interested to see how you do next.
Its an interesting subject isn’t it, this cholesterol?! I’ve read many books on the subject over the last few years and still no nearer to understanding what it’s all about! But thanks for your suggestions. No, as far as I know there’s nothing to suggest that any family have had any cholesterol issues We’ve always been a healthy lot in general.
Regarding Vit D - the rheumatologist, when I finally got an appointment to see him after 6 months of waiting for a diagnosis, was surprised that I hadn’t been taking any vitamins - ‘that’s because no-one has told me to’ I said. So he told me to take 25mgs a day of D3, not to bother with calcium if I was having enough in my diet, and he wanted me to take alendronic acid as I had once had a fracture (I tripped over my vacuum cleaner and broke a bone in my foot). I bought some Vit D3 tablets and also K2 that he didn’t suggest I had, then had to change them to oral spray because of the bad reaction to tablets. I refused to take the AA and requested a bone scan which confirmed that my bones were ‘normal’. That all happened last summer and I haven’t seen a doctor since! So I don’t have much hope of anyone being interested in sorting out my cholesterol problem. That’s why I’ve been grateful to this site for all the information I’ve been able to get through other people sharing their experiences.
And now that I can chat to others and have their opinions will be a great help to me.
I’ve digressed though.....sorry! Nuts, pulses and beans - nuts yes, walnuts, Brazil’s and cashews but in small quantities. Last year I included almonds, but one broke the veneer on my front tooth and it cost me £250 to have a new one. That was an expensive nut - and I now refuse to have one in the house! Pulses and beans I have to admit that I am not a fan of and when I first embarked on the healthy eating I vowed that I would enjoy my food and wouldn’t have anything that I really didn’t like....like pulses and beans.
Unless it’s a tin of baked beans! I do make a lot of healthy soup and I have tried adding beans and lentils, but I don’t like the texture so they’ve all gone to a better home - my daughter who loves them! I have been looking at a few interesting health and nutrition sites earlier, and I think I’m going to do a bit of tweaking again and concentrate on the cholesterol lowering foods, and see if that will help and am also going to increase the omega 3 supplements. But won’t take any drugs unless it’s a last resort and I’ve got 10 weeks to make improvements. I’ll keep you informed - and thanks for your input!
Have you actually been given a Vitamin D test by any of your Doctor's yet , or did they just suggest the Vitamin D without checking ?
It may be worth firmly requesting one now , if for no other reason that if it turns out that your level is fine it may be another thing you can rule out ( although if you only started taking it recently , as in the last 3 months , it may not have had its affect on your Cholesterol yet).
Good to hear you can get oral sprays , is there one for Calcium ?
That might be worth adding in as an option , but again, ask for them to do a Calcium blood test , or ideally a Bone Profile Blood test ( as then you will get to know your Magnesium levels too) and pick up all your figures as it's good to have a base line to work from with things like Cholesterol when you are already eating a healthy diet and it is suprising just how much difference one nutrient deficiency can make.
Make sure they do your tests again three to four months after your originals when you have made any changes , if they can do the tests , as it lets you know if what you are doing is actually working. They just assume it will a d don't take account of Patients being Individuals.
Increasing vitamin C at meal times can also help , it has had a small impact on my figures. Like me you already eat oats .
Healthy fats , sharp green apples, and fermented and probiotic products also seemed to shave a few points off my results early on, even in my previous GCA days.
I do seem to get high cholesterol figures for reasons that may just be my own .
Tiny steps and changes in multiple things can help together to reduce the impact that steroid use can have on our various side effects and accompanying symptoms.
No, I haven’t been given a Vit D test and I think it was suggested that I take some by the rheumatologist as a matter of course, as he was very vague about the dose and told me not to go over the 25mg. I have been taking it since last June so it’s had time to have had an effect in some way. I do agree with you about having tests for any deficiencies - I would love it if my GP was to suggest this but sadly I don’t think it will happen.
Maybe when I need to go back in 10 weeks for another cholesterol test I’ll take a list with your suggestions on and request that I get these done.
Not sure what will happen, but I can try!
It’s quite frustrating to think that I can monitor my blood pressure, I can have my blood sugar tested courtesy of hubby who is type 2 diabetic, but there’s no way I can see what’s happening inside my body!
Taking Vit C at mealtimes is interesting - I’ll do that.
I have healthy fats ... coconut oil, olive oil and butter from grass fed cows. I always have the plain Greek yoghurt which has cultures, and hard.cheese like Gouda and Parmesan, Brie, goat and sheep cheeses, and plain cottage cheese - all these have something beneficial and I enjoy just small amounts ...with a bit of chutney!
Yes, I agree with you - tiny steps and some changes might make a big difference, it’s just knowing what to do and how it might make an impact. Trial and error I suppose and a bit of hope!
Thanks for your advice - greatly appreciated.
Welcome, I ound a lot of help reading through posts before I poked my toe in the water.
Choleslestrol is a vexing issue as diet does not always play the role it used to be thought. That said diet always seems to matter, but different foods impact people differently.
healthline.com/nutrition/di...
I think one members relative had significantly reduced cholesterol by having porridge and an orange every day.
I was on statins for almost 20years and decided to stop lat year with the blessing of the dr. I do know my Hdl levels but they are on my Dr's site as test results and they aren't available as the site is being messed with. So I need to recheck when online. But here's some livestrong ideas.
livestrong.com/article/4087...
Hi and thanks for taking the time to reply to my query!
Your suggestion about porridge made me smile and I felt that I needed to tell you about my daily bowlful! I have organic oats mixed with organic full fat milk, a spoonful of flaxseeds with added vitamins from the local health shop, a spoonful of chia seeds, some cacao nibs....for added crunch, and a drizzling of local organic honey.
I love my breakfast!! Joking aside, I would have thought that a daily bowl of porridge over the years would have been enough to sort out the cholesterol! And I also have an orange every day - vitamin C to hopefully keep the virus as bay! Thanks also to the link for healthline which I have looked at while browsing the internet.
As you say, it’s very vexing when you think you’ve got it all covered and it turns out not to be the case.
I’ve considered myself quite lucky not to have had the ‘moonface’ that comes with steroids and haven’t felt any increase in appetite - maybe that’s because 15mg of Prednisolone isn’t a high dose? But I can’t help thinking that the steroids are having a laugh at me.....’ok, you’ve got away with the weight gain and hamster cheeks, but take a look at your triglycerides!! ‘.
😂🤣😂 I think the orange was with breakfast. I suppose its like not drinking tea with you meal as its said to reduce absorbtion of dietary iron. There was some research I read that said it wasn't really that important... If I find it... And I haven't just Interpreted it as I wanted I will post it.
It seems to be a common thing from my reading on the forum , that people whom lost a lot of weight previous to diagnosis , and did not have an increase in appetite , or manage to gain weight back can end up with a thinner face rather than the Moonface.
My face is actually quite skeletal .
I refuse to take statins because of a bad reaction and my cardiologist is perfectly happy. I have to confess to not knowing my figures as it is so long since I saw results but I don't think my triglycerides are too bad though,
This is a consistently good site:
healthline.com/nutrition/13...
and of course this is good:
healthline.com/nutrition/13...
You say you eat a healthy diet - but have you cut carbs, added sugar in particular? And have you been checked for other potential causes such as thyroid issues?
The importance of porridge and the orange is soluble fibre which carries excess cholesterol through the gut but I hate to tell the nurse that cutting eggs has been shown to not make any difference and in fact people eating eggs were shown to have lower cholesterol levels.
Ah. Soluble fibre. I couldn't remember the reason but knew it was there.
Thanks for the link to Healthline. I’ve had a good browse earlier and there’s some very helpful information on there.
Yes, I’ve cut carbs down - I only have the occasional slice of bread,which is always brown and seeded. I particularly like the low GMI seeded loaf which is made instore at our local Lidl. I use some and freeze some. I have cut sugar down to a minimum and only use a little bit for baking ....scones for hubby who is type 2 diabetic.
I do love my honey though and have a tiny amount in my herbal and green tea. And on my morning porridge. But it’s from a local supplier and isn’t processed so all good stuff in there from local bees! I love dairy and have done since I was a child but that was in the 50’s when all cows used to graze on lovely grass and the soil had minerals in!
So I buy organic from an online supplier and have a weekly order delivered. It’s not cheap but I like to see where the fruit and veg come from and know that the cows and hens are happy to roam and graze and that my eggs, milk and cheese are as good as can be. But I try to be good and not have too much - a lesson in self control as everything is so nice! And I agree about the eggs - I suppose I could have explained to the nurse but some people don’t take too kindly to having their knowledge questioned!
I’m going to take a look at the cholesterol lowering foods, like the soluble fibre as you suggested, and alter my diet to suit ....it can’t hurt. At least they’re all the foods that I like and I think it will be a simple matter of changing the amounts and finding a few new recipes .
No thyroid problems by the way.
Thanks again for your advice and I’ll keep you informed.
It doesn't matter whether it is brown bread, organic, local or what - carbs are carbs and contribute to the problems of blood sugar and cholesterol/lipid levels.
Or even home made scones. Which I miss.😏... But prepared to sacrifice for my blood sugar.
Morning! I have just had my usual bowl of porridge ...with an orange! I’ll continue to do this and hope it is beneficial . Thanks for your advice. Sorry about your scones!
I did try it but kept forgetting my orange! Good luck🤞
It might be helpful for you to record what you eat and work out the carbs in it. We often have people on the forums bemoaning they can't lose weight on pred even with low carb. When we ask, it turns out they are eating things they don't realise are high in carbs and they all add up very quickly anyway. Snazzy and I both struggle to lose weight unless we can get down to 20g useable carb a day, although that is pretty low. I'm not sure if the same applies to cholesterol but I wouldn't be surprised if it did, initially at least.
A bowl of porridge made with milk would score IRO 30g of carbohydrate - without sugar or honey or whatever being added. A tablespoon of honey has 17g carbs. An orange has 12g carbs. Toast to follow? Another 12g, even if it is wholegrain. Milk in tea or coffee - another few g of carbs. That takes you to 70g of useable carbs - and almost no-one on pred would manage to lose weight eating that in the entire day.
Yes, I think making a record of what I eat is a good idea, if only for the 10 weeks until the next cholesterol test is done. I will also make some adjustments to include more cholesterol lowering foods and see how that goes.
I will also take the advice of Blearyeyed and ask for a blood test to find out my vitamin levels. As she pointed out just one nutrient deficiency could make a difference to what I’m doing ....that makes sense. I’ve got an appointment with the practice nurse on 20th not pmr related, and she has been very helpful by organising the Rheumatologist appointment and a bone scan appointment as well as early blood tests, so I think she will be happy to do this if I ask.
Until then I’ll cut down on my carbs, take a look at my dairy intake and adjust as necessary, and carry on with the oranges!
That’s very true - even though the brown/seeded/spelt/organic is much nicer and more nutritious than the same amount of white sliced bread! But ...do I cut out carbs totally or cut down? Is one slice of good bread, with nice real butter, to dip into a boiled egg, just once a week better than having no bread at all? Difficult decisions to make !
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