I am wondering if anyone else here is taking statins? I have resisted until now but have given in. However, having read some of the side effects I wish I hadn’t! I have permanent nerve damage to my left foot after shingles last year but am walking quite well now with a brace. I read that one possible side effect is pain in the legs and some of the same symptoms I had after shingles, I really don’t want that again! More importantly, I read that statins can lower your platelets. Well, I’m already taking Hydroxycarbamide to lower my platelets so this worries me. I am to see the pharmacist next week again to review the new and will discuss this concern, but has anyone had similar concerns, please?
statins! : I am wondering if anyone else here is... - MPN Voice
statins!
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Michali45
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I’m on statins bone pain in legs due to ET
Do the statins affect your platelets? Are you on Hydroxycarbamide? I am sorry you have bone pain due to ET I have not had any symptoms and my ET was discovered incidentally.
Hi yes I’m on 5000 mg a week and I was only diagnosed due to lots utis and blood in urine last year
I also had blood in my urine. It persisted for months and I went to a urologist who did a cystoscope and told me that
“some people just have blood in their urine. “
Ugh! Glad you were better cared for by your provider. I am on statins and have been for several years. I take 1 20mg Crestor 2 times a week. My cholesterol numbers are really good. My HDL is 57 and my Doctor wants it at 55 or below.
I was on it daily, but I talked with my provider and we settled on 2 times a week and retest on 3 months.
Good luck!
and really fatigued a lot of the time no energy I’m 69
How did the pharmacist determine your need to begin statins?
I declined fairly recently on the basis that although my cholesterol was 6, my HDL/LDL ratio was 2.83 and my triglycerides were low at 0.67. Likewise, I have no cardiovascular or weight issues.
I discussed with the pharmacist that I would try and get my cholesterol down a bit more naturally. I already had a fairly good diet, but addressed a few ‘naughties’. Six months later I had another test. Total cholesterol was 5.6, ratio was 2.7 and triglycerides were 0.57.
I believe declining at this particular time was the right decision for me.
There is undoubtedly a place for statins. A lot of forum members take them with no issues. Indeed, they do have anti inflammatory properties which has to be a good thing in relation to MPNs.
Reading side effect of any medication can be scary. It’s important to remember that although there are side effects to all medications, it doesn’t necessarily mean you will suffer any of them.
Thank you for a very helpful response. I was advised three years ago to start taking them and resisted but I’m not sure why I gave in so easily this time! My cholesterol was 5.7. I knew about the possible leg pain but I’m more concerned about the platelets, which I had not read about before I started. I see the pharmacist this coming week and will raise the issue with her and also will contact my Hematology team before my appointment next month. I’m glad to hear about he anti-inflammatory benefits! I do agree that I may never experience the leg pain but am more concerned because of my existing nerve damage. I love to walk! I must say the pharmacist is very supportive and I won’t hesitate to contact her if I have serious doubts or problems. Thank you again!
Did you get a HDL/LDL ratio and triglycerides breakdown? These are significant in determining risk.
I haven’t heard about statins having any effect on platelets. As I mentioned there are many forum members on statins. I don’t think they would be prescribed if found to be contraindicated.
I’m never any good at understanding cholesterol!
Blood test results
They really don’t make it easy to understand. Your lab results are a different layout to mine.
All I know is the LDL is the bad cholesterol. HDL is the good cholesterol. Your HDL and triglycerides are good. But your bad cholesterol (LDL) is raised, however, I can’t see a given ratio.
I think I read somewhere that it is now the Serum Non-HDL cholesterol level that counts, but don’t quote me on that. If that is the case even though my ratio is good at 2.7 that puts me at risk apparently!
Thanks for looking at it! I’m going to take it day by day and see how I tolerate the statins. I will check with Hematology regarding the platelets but I did read that when on hydroxycarbamide, one can take statins. Thank you for your helpful responses.
I've been on statins since having a stroke long before my pv diagnosis. I don't have any problems with them.
The side effects of statins creep in usually unnoticeably over a long time. Those who I know thought it was normal aging that they were getting weaker. After supplementing with CoQ10, they regained strength and are hiking again and able to do more garden work.
Regarding osteoporosis, (Om so sorry to hear you have 5 vertebrae fractures!!) it is important to have a constant Vit D level of 60-80 in order for the bone to take in the calcium that you are taking or from your food. Below that is a definite although it’s in the norm. For me to achieve 80, I take 60,000 IUs per week. My husband needs only 40,000 to stay at 80. Half his psoriasis has gone after 2 years of high Vit D supplementation (except in summer).
This might help and there are also other natural ways to increase bone density. I love going to my natural gurus who have great tips up their sleeves 😁
Most effective D comes from the sun. 15” per day without sun cream is enough to get 10,000 IUs. Careful with very pale skin, but this takes in vit D faster. The darker the skin, the more sun it needs to replenish Vit D.
All the best Anag
Please make sure you are supplementing CoQ10. Statins knock this important enzyme out of your body and this causes cell weakness in all cells and is also not good to the brain.
Wishing you well Anag.
While statins do lower cholesterol levels, there's no proof they do a lot to prevent heart disease, especially in older women. Just make sure you're eating real food (not necessarily low fat, but REAL) and not highly processed stuff. It's a good idea to shop the ends of supermarkets, where the produce, meats, fish, eggs, etc. are and skip the middle aisles, where all the processed stuff is. Also a good idea to eliminate or greatly limit sugar. Obviously I'm not a doctor or nutritionist, and I'm not advocating any particular diet, because one size never fits all, but these are things to seriously consider.
I think I eat well, except for the sugar! I have to take myself in hand for that!
It is probably the sugars pushing your cholesterol up as they create inflammation and the cholesterol in the blood vessels is a reaction to that. Are you aware that cholesterol is said to be the most abundant substance in the body? Try looking up the Fat Emperor Re all things cholesterol and statins. Good Luck with whatever decision you make
Have been taking statins for about 6or 7 yrs- feel fine. I also take aspirin and Anagrelide for my ET. Am good with all of these.
I've been on Statins about 15 years now never had a problem long before I was diagnosed with MPN on 500 mg Hydoxycarbamide Monday to Thursday... I'm 69 years old...
to understand cholesterol and statins better, I can highly recommend the book “Statination” by Dr Malcolm Kendrick. You can then have a fully informed discussion with the pharmacist or doctor about whether this is the right way for you to go.
Hi, I don’t think so, but check out drugs.com
I have PV. No one ever mentioned statins. I had an asthma check with the nurse and said don't you do cholesterol checks anymore. She look through my records and couldn't find last results as so long ago. I get a call from doctor following blood test to say cholesterol was 5 and they'd run it through computer model and my risk of developing heart disease and a stroke over the next 10 years was 22%. I could try and alter my diet over next 6 months and have another test or go on statins straight away. I couldn't really see me making much changes to diet, so elected to go on statins. Read the leaflet and nearly didn't bother when you look at side effects. Anyway I've started taking them and so far nothing untoward. I have PV clinic blood test in 2 weeks so will see what if any affect they have on blood cells.
Thank you for your encouraging response. I guess our regular blood tests will show any concerns
When they tell you that your risk of heart disease and stroke is 22%, remember that means it's 78% not likely. Don't let them scare you with percentages.
That is true, but if I can reduce the risk more with little consequences, then I'll go for it. I could be in the 22% who have a stroke. My wife had a stroke 3 years ago and I'll reduce the risk of not having one. Each to their own decision, what ever they think best for them.
I have taken strains for over 20 years. My main problem with them was hair loss.
I have tried several, all with a similar effect I was almost bald after a l long stay in hospital with Covid and STEMI heart attack.
I opted to stop statins and now have a reasonable head of hair.
Good luck
I haven’t heard of hair loss with statins. Mine was never very good anyway. I seem to be tolerating them pretty well so far as far as I know!
Hi. I have bone pain due to ET. I take statins and they have not lowered my platelets. No side effects that I can feel. We are each individuals and so things affect us differently.
I agree but your response is encouraging
Make sure they do the test after fasting overnight. They told me I needed them . I refused as the reading was abnormal but told them I wanted another test after fasting.
It was its normal reading. Question everything if you know your body & food intake 👍
Good point but mine has been high for a few years. I love cheese!
Yes my cholesterol was slightly lower with the fasting test and so was my sugar level. I wonder how that works
I was told by my GP I had to take statins. The first one they put me on gave me dreadful muscle pains in my calves so they put me into a new one which was even worse …pain in all four limbs and shoulders! However, my GP said there are many different statins he could try and the third one was absolutely fine…haven’t had a single side effect from that one and have been on it for about four years now. Keep going…and good luck they match you to the correct one. Also, he told me to supplement with COq10…although it is produced naturally by the body, apparently the statins deplete it and that’s why many people have joint/muscle pain when taking them. In fact he was really surprised when I said I hadn’t heard of it and said everyone on statins should be aware of it! Maybe that’s why I had pains with the first two statins?
Yes, that is what I’m being told too. Must let them know of any unpleasant side effects immediately and they will change it. Fortunately, I feel I have a good support system with my GP surgery and the Pharmacist, so fingers crossed!
Understanding cholesterol before taking statin.Cholesterol came from food 20%, the rest made by our own body and use mostly by brain.
It also transport by LDL from liver to repair damage of vein, which caused by inflammations.
Instead blame the fire fighter at fire scene (LDL), better treat the root cause of inflammations (sugar, veg. Oil, carb etc.
Statin just made you get more problems
I have been taking statins for over 20 years. First I started on crestor which caused muscle pain and fatigue, then went to pravastatin and absolutely no problems. All my blood levels for the cholesterols and triglycerides are WNL. Just my experience. Best to you.
This post is interesting as Manouche ( approximately 25 days ago) posted a link to research that seemed to suggest that taking statins might benefit some older ET and PV patients? I wonder if anyone with a pre-existing MPN has seen any benefits to do with their MPN after starting to take statins? Many thanks in advance for any replies.
I stayed off statins because of the bad side effects I read about on Drugs.com. Scary bad reviews. So I tried to lower the numbers myself but they barely went down even with diet change & exercise. I ended up needing two stents & while in the hospital I found out my platelets were very high & I needed to see a hematologist. That's how I found out I had ET. So now I take pills for the ET, stents AND statins. And all my fears were for nothing. I have had 0 side effects from any of the meds I now take. lol.
Hi, good idea to discuss with the pharmacist…..I am on interferon injections, and have,…like yourself, given in to having Statins, I have been on them for about 8 weeks, so far so good…not aware of any side effects.
Wishing you well….
Can I ask which statins you are on? I am on peg too
Atorvastatin 20mg
atorvastatin, 20mg
Im 59 (ET formally diagnosed 18 mths ago), on aspirin and hydroxyurea- the hydroxy just 3 mths).Commenced Atorvastatin 3 weeks ago, as bloods now show moderately high cholestrol.
I asked for one with less side effect of myalgia/ muscle pains as I already have chronic pain from spine probs, and good old ET bone pain in particularly thighs, and fibro.
3 wks ago a CT head showed a lacunar stroke (probably a yr ago), so Im really happy to be on a statin, along with trying to modify my lifestyle.
I would like to think our drs discuss pros and cons with us, before any prescribing...
But in my case, if its a weapon in my toolbox to fight further strokes- which could be worse- Im happy.
I also research extensively, as a nurse of almost 30 yrs
Thank you. I hope all continues to go well for you.
I had concerns of side effects when i was younger and resisted various medications for as long as i could. But now take quite a few. Just like the brace you use for your foot, sometimes our body needs a little help. Especially as get older.
My view on statins is this: if you are eatiing healthy and clean. No junk food, cakes, sweets, processed food etc, but your cholesterol is still high. Maybe you need statins.
Everything comes with risks. Even the Hydroxycarbamide. You know your body and your lifestyle and decide if the gain if worth the risk.
I’m resisting taking them. Although my overall cholesterol is high, my coronary calcium score is zero and my triglycerides are less than 1 (0.7) which my research says indicates your cholesterol particle size is big, fluffy and harmless - as opposed to small and dense. I stick to a strict exercise regime and I’ve been on a ketogenic diet for over a decade
Hi I had a text from gp surgery to say would I like to go on statins ? I don’t know why as my cholesterol is fine I am diabetic but on meds for that ,
I've been on statins for nearly 2yrs, I have not had any problems. I seemed to have more energy .Best Wishes
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