PSK9 Praluent

[Whatnow1973]

Hi

I have scarily high cholesterol (11.7 with LDL 8.1). Awaiting results of a FH test. My endo is starting me on Praluent & I’m looking to hear positive /negative experiences and also any tips for getting used to it.

Thanks in advance

x

[Blearyeyed]

Are you also taking the statins and making diet changes? I'm not on this drug , I have FH but have statins and Ezetimibe and diet management as my treatment.

The combined treatment and Self Care has worked for me and my lipid profile is in acceptable. normal range again. Statins and Diet alone wasn't enough for me.

I'd be interested to hear about people's experience of this too as it is one of the newer approved treatments for Primary and Genetic HyperCholesteroleimia and Hyperlipidemia,

It may cause you some side effects when you first start taking it as your body adjusts , most of these cholesterol lowering medications do , but that usually adjusts over 4-8 weeks,

Some people can get some Fatigue , a mild cough , some joint aches or diarrhea as you body adjusts , especially if you are also making important duet changes at the same time.

Unless you get severe symptoms of allergy or intolerance, or your side effects keep increasing it's worth giving it time .

Make sure you drink the recommended amount of water each day on any combined cholesterol lowering therapy as it can sometimes cause some internal dehydration especially if you get some constipation or more regular bowel movements so proper hydration reduces the risk of side effects or reduces how the side effects feel.

Keep us updated and let us know how you get on , take care , Bee

[Whatnow1973 in reply to Blearyeyed]

Thanks for your reply,

I’m not taking statins, I tried but the side effects were awful. I’m also under rheumatology for joint pain & could barely walk when on statins.

I’ve actually got a very good diet but I’m trying to make further changes, eg at least 50% plant based. I need to lose weight and have been slowly doing so but I have a thyroid condition (honestly it never ends)! So this makes weight loss a challenge.

What diet changes have you made and have they been successful ?

I should have the medication by next week so I’ll update for sure!

[mrsm49 in reply to Whatnow1973]

I'm not saying this applies to you but I had a thyroidectomy and my consultant told me that if I am not medicated "properly " then that causes my sugar and cholesterol to be higher than they should. Many doctors are not able to ordee a full thyroid panel of bloods to show this, you need the usual tsh and t4 PLUS t3 to see what's going on, have yr blood test first thing in morning and don't take any thyroid meds on morning of yr test as it skews the results, take them with you and take them as you walk out. On a separate note they want to put my mum on statins and told me last week that if she gets any bad joint pain she needs to stop them immediately and go back to doctor as there are different statins and also there are now another type of cholesterol lowering drugs.

I'm probably telling you things you know already but if not i wish you luck in sorting it out xxx

[Whatnow1973 in reply to mrsm49]

thanks for your reply. My thyroid is very well managed but I’m sure having the condition has contributed. I think menopause might have caused issues too.

[Lowerfield_no_more in reply to Whatnow1973]

I was diagnosed with a total cholesterol of 9 over 25 years ago in the days when there was no such thing as FH testing but initially tried to get it down by 'lifestyle' alone. I was already doing the right things in terms of body weight, exercise, not smoking, alcohol consumption, and so the only thing left was diet. We already ate healthily but I persevered with my wife's help and I ended up with a different aggressive diet to the rest of the family, low fat this, no fat that, oatbran muffins etc, and got the count down to 6.5. But life got in the way, and my diet was miserable and caused problems in the kitchen, and so my lipids crept back up again to nearly 8, so I started on statins and my lipids dropped to between 5 and 6. The thing about folks like us with really high cholesterol is that you will not get your count down by diet alone, and if you try, your food life will become a misery in my view. So I take a pragmatic view on what I eat and moderate things that I enjoy like dairy rather than eliminate them from my diet, and that works for me with medication now max dose Atorvastatin and Ezetimibe and my total lipids are now under 4. Finally the thing about diet to reduce lipids is it's a 'for life' thing, and if you enjoy food as I do, your resolve will slowly be eroded in time as I found all those years ago and you will then be back to square one.

[MoretonCross in reply to Lowerfield_no_more]

Do you check the ingredients in the low fat products you consume? Often you'll find they contain elevated levels of sugars and other nasties. Personally, I'm on a full fat low carbs diet and maintain a 32 inch waist with no problem at all. I'm a 78 year old male person currently on an 'urgent' waiting list for aortic valve replacement plus a double bypass. The only dairy product I won't touch is cow's milk, but I eat proper butter, lots of it, and cheeses. I also eat meat and oily fish. But keep the carbs to a minimum so no pasta, rice, or potatoes. I also eat bread but only bread without any list of additives. Plenty of stuff on YouTube regarding high fat, low carbs diets. It turns the generally accepted food pyramid on its head, as it should be...

[Lowerfield_no_more in reply to MoretonCross]

My wife and I cook from scratch. So no real need to look at labels. And we don't go for low fat foods, just take a sensible view on the type and quantity of fats and oils we consume. As for sugary stuff again moderation so generally no puddings or cakes or biscuits or sweets or snack bars although we do enjoy a glass or two of wine. As for carbs no restriction, and we make our own bread.

[Whatnow1973 in reply to Lowerfield_no_more]

I cook, 95% from scratch. I love to cook and also can’t eat wheat so cooking from scratch is easier. I don’t focus on low fat. I try to eat a Mediterranean diet but probably eat too many carbs which I need to address.

[Whatnow1973 in reply to Lowerfield_no_more]

I agree,. I want to live a long life and I do need to lose weight but long term I love food, I love to eat and I love to eat good food or else I may as well be dead!