👋 to allHas anyone tried COQ10 supplement?
Have been recommended to try it by 'holistic' nutritionist. Was very impressed with her research into AI inflammatory diseases - one suggestion was to try Gluten free diet for 4 weeks to see if any improvements noticed and the above supplement.
Going down to 3 mgs pred ........after 7 years so am willing to try most things!!!!!
Hello, when you say you are willing to try most things, is that because you are trying to prevent recurrence because you are in a good place right now or that you have issues you are trying to get rid of?
Hi Snazzy, I am in a good place and would like to stay there! 😌 residual fatigue only concern and wondered if diet might help, hence visit to nutritionist when the GOQ10 was mentioned. As I had not heard of it, thought I would ask before spending money as quite expensive.
Yes it is expensive, and once upon a time it was suggested you take it alongside statins, but there are warnings not to take it with insulin, blood pressure and blood thinning medication.
There doesn’t seem to be any major interaction with Pred per se, but as with any supplement you should check with GP/pharmacist.
medicalnewstoday.com/articl...
Will do, thank you, 😊
And thanks for article, interesting bit about statins as I have been diagnosed statin intolerant due to muscle pain - hard to discern difference between PMR pain, recalcitrant adrenals and statin but now trying Ezetimibe 👍
I take Ezetimibe and have no negative reaction. It did lower my lipids but the LDL and total still need to come down more.
Get first blood check on Monday. Are you staying on Ezetimibe? I have only been taking it for 3 months so not expecting miracles.
Yes, I will stay on it. Its the only lipid med I can tolerate. Dr. "negotiated" with me to take ONE rosuvastatin 5 mg a week along with the ezetimibe. So far I can tolerate this amount. We'll see how the next labs turn out. Amazing if 1 a week can help. Also fish oil is very good in raising one's HDL
Hi,Have you seen the latest research linking statins to pmr?
From where? ..and good or bad?
If you mean good -do you mean this?
rheumatologyadvisor.com/hom....
If not, perhaps you’d like to link?
Though even that is pretty guarded - small study that the authors themselves admit wasn't very well designed.
Thought so too….but as there was nothing much to go on in question, just tooka quick look… may be better studies out there.
It IS a very good group - could well be something in it. But something struck me as I read it all - but it is being a bit elusive. Might look again later ...
is it ok with aspirin
According to this yes -
It’s a difficult one because it is hard to know whether something has had a large part to play in any positive or negative outcome unless there is a clear cut cause and effect. It’s even more difficult to tell if one’s continued good place is due to the supplement/regime or not. If you try more than one thing it’s impossible to know if it is one thing or the combination.
After cancer I ended up on lots of supplements including CoQ10 and it all cost a fortune. I decided it was not sustainable and was driven by fear and the need to feel I was doing something while at the same time it was impossible to prove. It was hard to stop because it felt like I might suddenly become ill if I did. With GCA I tried not to get into this again and only take what I know has a direct effect on something that is specific like bone health. Even then it isn’t easily provable. I was gluten free before GCA and nearly dairy free too.
You can but try to see if you feel better but be wary of an escalation unless you can afford it. As for gluten free, I think it takes longer than 4 weeks for the gut to heal IF it has been affected, though when I did I felt an improvement generally after 2 weeks. Gluten makes me suffer so I have an easy pass on that one.
Thanks for such a comprehensive reply. Shall probably give it a go if pharmacist okays it. What would I do without you all 😘
Hi SnazzyD! So much sense as usual. Have just been reading your own personal info, yet again. Today the one thing that jumped out of the page to me was “self discovery “ which has really made me think about myself. I am not the same person mentally, physically, or emotionally as I was pre PMR, Yet in some strange way I have contentment. Keep smiling, you are wonderful.
How expensive are they in Europe?
Varies, probably due to strength and ambition of the seller, not to mention size, number etc., but anywhere from British pound 7 to 50. How about where you are?
In the U.S., on Amazon, they cost $7.72 for bottle of 60 100mg softgels.
£15 for comparative number and strength, although can get Nike ones for £8, you can also get others for a lot more! 😉
Hello, I have taken Co-Q-10 for over 20years, for energy in my case, and wouldn’t be without them. I use the Pharma Nord brand, Bio-Ubiquinol 100mg, (one per day).if I run out, I feel a huge difference in my energy levels. I worked in a very demanding job until I was 72, now I am down to 1 and a quarter mg pred am always on the go. One thing - they did not prevent me getting PMR., Co-q-10 can also stop bleeding gums. Health food shops often stock Co-q-10, there are various brands, but I believe Pharma Nord to be the best and I check out the best price online, often buying from Amazon. It is important you get the Ubiquinol, better for older people! Hope this helps!
I take CQ10 and buy it from Amazon which is much cheaper. I take MTX which causes me real exercise exhaustion but mitigates the PMR … so am in a rock and a hard place! I also take BP meds and have had no issues there. CQ10 really works for me, and gives the energy I need. Perhaps I should have word with my pharmacist who is very knowledgable about interactions with it?
That is so encouraging. Thank you. As said in replies above, will check with pharmacist xx
Hi thereI was reccomend by cardiologist 15 years ago to take this daily as statins reduce the body's production of Q 10enzyme which is really important I had just had heart attack .I have taken it ever since ,changing to ubiquinol which is better for those over 50 .
Absolutely no side effects or interactions only time I realise how well it works is when I occasionally run out and don't take it for a few weeks.
Thank you. I had never heard of it but judging from replies it does seem it may help xx
Given there are several people who are coeliac on the forum - really not sure that gluten-free makes much difference. I was eating gluten-free early in PMR because it caused an allergy to wheat starch and at that time the only way to avoid wheat was to frequent the free-from aisle. If you go gluten-free and DON'T use the Free-from commercial substitutes it will reduce your carb intake a lot - and THAT can make a difference for many, But "gluten-free" per se doesn't really - and it isn't easy or cheap. You have to read the labels very carefully because gluten gets in an awful lot of places you wouldn't expect.
OH thinks gluten free quite ridiculous! As he does most of food prep, this could be difficult. Might get away with a gluten reduction - would that be of any benefit? 🤔
When I cut carbs drastically then it removes most sources of gluten. There are studies that suggest gluten MAY have a role in inflammation but I'm far from sure that they have separated gluten from carbs in general. And I am always a bit suspicious of who funded any such study!
However - yes, cutting your intake of processed carbs will automatically remove a lot of gluten from your diet, And that is definitely helpful for us with inflammation and being on pred. There is no evidence that gluten itself is detrimental to normal healthy people - but the foods it contains can be if you are coeliac or have a wheat allergy/intolerance. People say they feel better - cutting carbs does that if you turn to more "healthy" carbs in fresh foods. But you won't if you switch to Free-from products which are incredibly calorie dense, ultra-processed products with a lot of sugar.
Good to have that warning. Going for the healthy fresh food option, those grown above ground and berries. Recieved quite a comprehensive diet sheet to try which contains much of the foods recommended on here - and she didn't charge as uni student in final year and moderator. I shall be part of her thesis, so hopefully win win 😀
Vegetables grown below the earth are bad then? Carrots, parsnips etc, is this because they are sweet and starchy? Sorry to be dense.
Not at all dense, I only knew recently that overground veg were better. I presume it is the starch, Pro will know.
In the context of low carb, yes. Not BAD per se, but root veg have a fair bit of carbohydrate.
I always recommend the Diet Doctor site for a clear and understandable presentation of where carbs hide:
Ignore the plea for joining, you get more recipes and a personalised meal plan, You don't need it when you learn and understand the principles of low carb eating.
That’s useful thanks, on a different issue, I have lichen sclerosus and read that spinach should be avoided, both raw and cooked . What’s in spinach that’s so bad?
Oxalates! In rhubarb too. Disputed - like most things in dietary advice.
healthline.com/health/liche...
"There is little-to-no research on the impact of diet on lichen sclerosus. The Vulval Pain Society provides some research pointing to the potential benefit of diet changes, like a low-oxalate diet, that may affect pain level. Findings are not conclusive, and a low-oxalate diet has been refuted by another study."
If you go to the page there are links. In fact, the Vulval Pain Society did a study where anecdotally some women reported certain foods made it worse. Then they mention the other study which sounds a bit more scientific because they removed confounders - and found no difference. Think it is like so many things, what works for one doesn't work for another and vice versa,
I’m interested in your comments ‘’DON'T use the Free-from commercial substitutes it will reduce your carb intake a lot - and THAT can make a difference for many,” I dabble with a gluten free diet as I thought it might help reduce inflammation (have I got this wrong?). For instance I’ve been buying Tesco Free From bran flakes, gluten free bread and other Free From foods. Am I wasting my money doing this? If so what should I be eating to try and reduce inflammation? I’d be very grateful for advice.
I think you are wasting your money - even when I was eating gluten-free to avoid wheat I didn't think it was worth using g/f bread, I'd rather go without! However - if anything feeds inflammation it is more likely to be the carbs, and sugar in particular - and there tends to be a lot in the free-from aisle to "improve" flavour and make them palatable. They are also more expenesive - because they are more expensive to produce in a protected environment to be able to claim the g/f label, And I'm also not sure that "dabbling" helps at all - gluten isn't just in cakes and biscuits, do you read all the labels and change your recipes at home too?
The low carb diet we go on about is also anti-inflammatory. It means a change in approach to food, removing all those things you are using from the free-from aisle. It is actually quite difficult to reduce inflammation when there is an active disease process ongoing and creating new inflammation on a daily basis. But many of us find that when we fall off our low carb wagon we have worse symptoms.
Thanks for your reply. Do you have a link to the low carb diet that you use? I am still finding the food aspect of dealing with PMR very difficult.
I saw mention of a gardening section some while ago (although I’ve never seen it) outside this area, so as not to interfere with the valuable information surrounding PMR/GCA. I wondered what the possibilities are of a recipe section where people could share their favourite low carb meal ideas.
I usually suggest this site to learn the principles - I don't use a diet as such, I know what has lots of carbs and what doesn't. I don't use recipes as such but the site has some I think and there are loads to be found all over the internet.
It isn't so much what you eat as what you DON'T eat. You restrict carbs, especially processed carbs and added sugar, so little or no bread, baked goods, pasta, rice, potatoes and other root vegetables, limit fruit, as most fruit has a lot of sugar, This site has loads of pictures which make it easy to see and remember what is low carb and what isn't.
It isn't a gardening section as such - piglette set up a FB group so it is totally separate. It is difficult to have something like that on HU - you can set up a private group of up to 10 using the Chat function but it can't be generally accessible. If someone wants to set a cookery option up they are welcome.
Thank you I will have a look at it and hopefully be able to adapt my diet. Not sure this is the right time as I’m not in a good place right now.
Have replied in your post re this…🌸
Out of interest, are you still eating gluten free? Or are you ok with wheat now the PMR is being treated?I'm not coeliac but have been trying (and failing since COVID!) to avoid wheat in the hope it will help my symptoms. What symptoms did the allergy cause in you? I find it har to tell what's causing what right now, especially as I'm either developing long COVID or I have another infection.
I discovered I was fine with other wheat varieties - spelt and kamut for example - and they are used a lot alongside rye in day to day products here. Most bakeries have spelt breads every day, kamut less often but still common. The bakery in the village even uses spelt for a lot of its cakes. High doses of pred (IRO 15-20) damped the reaction enough to eat ordinary wheat occasionally so when eating out I might ask for g/f pasta to keep the amount low while not worrying about eating a sauce that would be off-limits for someone coeliac. Since I went on Actemra I seem to be able to eat pretty much anything without the rash developing. I don't eat a lot of gluten - but I do eat it. However - I much prefer breads made with the other grains - and I was always able to eat French breads which use a different wheat and a much longer maturation in producing the bread. Maltese sourdough bread was fine too - long rising process. But I probably eat wheat products 4 or 5 times a month - more now as I go to the seniors club in the village twice a month and the main purpose of the afternoon is to eat cake and play cards ...
Oh wow - I love the sound of a club where the purpose is to consume tea and cake - I could manage that!It's interesting you get a rash. Is it an eczema type rash or urticarial I wonder?
I hadn't heard of kamut. The spelt breads and rye and sourdough are quite popular here now, but seem to be sold as upmarket breads if the price tag is anything to go by.
My partner bakes me loaves from the Dove's farm gluten free bread flour . They do a white and a wholemeal mix, the latter needing milk as well as egg added to it. They are nice, but nothing beats a loaf of Cranks wholemeal in my opinion - shame it isn't wheat free!
Spelt and kamut are everyday grains here - it's the Austrian influence really. They use a lot of unusual grains. Make a UK white sliced look very dull, Bread isn't cheap here but you do at least know you have eaten a slice!
🤣 Yes, whereas here with many supermarket loaves (that are not exactly cheap these days either) you often feel as if your eating air!
Occasionally you meet a rye loaf here that could do with a bit of air to it!!
😄🤣🤣
I get the flour for my Sourdough bread from Doves farm. It makes lovely bread.
Thanks for sharing that. I've never seen it. Is it an actual bread mix or flour from which you use to make your own bread?
It's Doves farm wholemeal rye which I use in the breadmaker. Twenty four hour process to make the first stage sourdough starter, then five hours to make the bread.
That's weird- my reply was sent twice. I will look into a bread maker as I've never had one- apart from my partner 😄.
It sounds like a long old process to make a decent loaf, but well worth it.
We have a Panasonic SD 2511,probably superceded by now! it's brilliant.
Any decent loaf needs a far longer rising process than is commonly used in the UK. Any self-respecting pizza chef here makes his dough one day to be used the next! Sourdough really must be made with a 24 hour process at least.
Thanks for sharing that. I've never seen it. Is it an actual bread mix or flour from which you use to make your own bread?
Hello Poshdog again!
Just looked on WebMD - have a peek - very comprehensive and packed with all the info one needs I think! 👋
Thank you🌟 shall def have a read, thanks for finding it 😘
Well, that's pretty positive!
Yes definitely and reassuring too! x
Yes definitely and reassuring too! x
When I was diagnosed with PMR I went gluten free as I was told it stopped the moon face. In fact it worked but may have been luck! I tried GOQ10, but I am not sure it made any difference. I have given up the gluten free idea and also GOQ10! It may work for you.
Don't think I will manage gluten free, probably more stress than it is worth! At least for me, but may try Goq10. Will let you know how I get on. Thanks for your comments - much appreciated xx
Went to leg foot ankle surgeon after pmr gone but bed legs remain. He sent me to a herbalist. I switched off when she told me she could get me off omiprazole which I had been told to take for life . Bleeding from hiatus hernia .3 iron infusions! BEWARE
Hi Poshdog,
I’ve been taking Ubiquinol for a few years now and they do seem to give me a bit more energy. I buy them from Amazon.
Thanks, the big A seems to sell everything!!
Supplements, vitamins etc are massive money makers and the Cos behind them will do all they can to convince you it’s good for you…
If your blood tests are normal you normally would not need any supplements, it’s like washing money into the toilet as your body only uses what it needs and gets rid of the rest. For us who are on steroids vitamin D is perhaps the exception as the steroids can accelerate bone brittleness but to my knowledge that’s all!
Good luck and well done on your successful tapering so far!
Yes have felt the same as you but had not heard of this one before hence my post. So appreciative of all replies, thank you
No experience of taking in PMR, but my ex husband had ME and CoQ10 helped him enormously, he could really tell if he stopped taking them.
I take CQ10. Was recommended it for migraine prevention, and so far so good.
I agree with others on the low carb diet, but personally wouldn’t go gluten free, unless I was diagnosed celiac. A lot of gluten free options contain a lot of sugar and often potato starch which I do not digest well.
So I try to stick to uncomplicated unprocessed food as far as possible. Life on pred is complicated enough!
yes. I took CoQ10 to see if it helped my fibromyalgia, & provided me with more energy. I took it for six months…it did nothing, apart from affecting my bank balance!! This was ten years before I got PMR!
I’ve been on coq10 for 15 years. I take statins for cholesterol so it is a must taking statins
It’s a great supplement but I still have pmr for 2.5 years. I don’t think it helps pmr but try it
haven't tried coq10, but eliminating gluten, dairy, and most carbs helps me tremendously. Might just be my body, but hope it helps you too.
FWIW, when my primary care doc put me on 10mg of statins about 10 years ago, he also told me to take CO Q-10, 100mg/daily at the same time to counter some of the negative effects of statins,
Searching I found:
Some people take CoQ10 supplements when they take statins because statins can lower the body's levels of CoQ10. CoQ10 deficiency can cause a number of side effects, including muscle pain and weakness, fatigue, and shortness of breath.
There is some evidence that taking CoQ10 supplements can help to reduce muscle pain and weakness in people who take statins. However, the evidence is not conclusive. Some studies have found that CoQ10 supplements are effective, while others have not.
In the U.S., on Amazon, they cost $7.72 for bottle of 60 100mg softgels.
It does seem to be a bit of a lottery! Thanks for your response, taking all into consideration and bearing in mind we are all different, thinking of trying for a month to see 🤔
I took CoQ10 (ubiquinol) for about six years, but it didn't stop me from getting lung cancer or PMR. Continued for for a year or so afterwards, but it did nothing for my PMR. I also discovered that carrageenen - considered in some countries to be cancerous and pro-inflammatory - was one of the ingredients. These were supplements from a well-known and respected supplement provider.
Yes. I take the reduced form of COQ10; Ubiquinol as I’m also on Crestor.
I had read that this supplement is good for afib too. I have not yet asked my doctor if it is indicated with the current medications I am on. I will pursue that.
Beware what you read - one website says
"Does CoQ10 help arrhythmia?
Fish oil rich in omega-3 fatty acids, magnesium, and CoQ10 are three powerful supplements for arrhythmias that can play a crucial role in fashioning an effective arrhythmia-prevention program."
Another just below that link says
"Supplements to avoid
Omega-3 fatty acids. Although health experts have long recommended omega-3 fatty acids for heart health, a meta-analysis of seven studies found that taking one gram or more per day may lead to an increased risk of atrial fibrillation. ..."
And to be honest - I think the second source is more reliable.
If you have a/fib you should be on anticoagulant therapy, Mount Sinai, New York, says
"Can you take CoQ10 while on blood thinners?
Blood-thinning medications: There have been reports that CoQ10 may make medications such as warfarin (Coumadin) or clopidigrel (Plavix) less effective at thinning the blood. If you take blood thinners, ask your provider before taking CoQ10."
Thank you. I'll take a look at it , or it's equivalent 👍
Aah, deleted my double reply and it's deleted the whole post, yours and mine did you you take a note of the details or do you need me to repost them?
Wonder if there is an undelete button???
Not on forum …. Too quick to delete things.. [could say must be run by No10, but wouldn’t dream of it ..] 😳 😂🤣
Wired cramping feet and hands 😬
Blood pressure alternatives/supplements
Which GCA meds if any could increase urination?
Do natural supplements work to reduce high cholesterol?
pmr without steroids(so far)
