Hello everyone, I hope your week is going okay.
Just a quick update from me, I think there is another heartie who may be joining this trial, apologies, I can’t remember who.
I had my first meeting today and thankfully have been accepted onto the trial for the inclisiran injection programme. Hopefully it will help, although my total cholesterol is not high, I am sure it could be better!
I have my next injection in a few months time, so will find out more then.
take care all, Judi
Hello, thank you for replying. I said to the nurse this morning, the more people this research helps the better. Some mornings I could not walk when I first got up due to the pain in my muscles, I tried really hard with three statins. I am so grateful to be given this opportunity, I didn’t ask for it, I was chosen at random. This is apparently the last trial, across the US and the UK I understand about 15,000 people have/are being involved in the trial. Let’s hope that it will benefit many, many people in the future. Take care, Jude x
Wishing you all the very best with the trial. Lots of love. Jan xxx
I've been on trial also.. see you hve leg pain .iv haD that since b on statins for 2 years also. Also steroids 2 years. As couldn't walk. Now under hospital with no iron .level was just below 70. Had treatment await ong endoscopy etc stTins working bur feel old now 67 but young
Hello Truesta123, I am very sorry to hear you are in so much pain. I couldn’t walk very well with statins. I hope your trial is going well. I have just started mine. Take good care x
Hello 
Good luck I hope everything works out positive and well done for volunteering to x
Hey you came back !
Hope it goes well. Thanks being willing to take part.
Thank you, 😊
Its a trial where really we have nothing to lose. We stay on our current treatment, but are then randomly assigned to either the Inclisiran group, or placebo group. So theres a 50% chance we are taking the ‘new’ drug, but we don’t know which, till the trial is finished.
I have had heart episodes in this trial period, and have had additions and changes in meds. These are all noted.
So its really not brave! Things just go on as usual.
I never said I was brave, it’s simply a wish to help others and hopefully bring my cholesterol down.
It has been said to me before, about being on this trial. But you’re right, it wasn’t you! Apologies.
I honestly think that it is brave to be willing to try something totally new without knowing all of the potential effects on your body. Plus, you don’t even know if you are receiving the actual drug or a placebo. Still incredibly brave.
I, personally, am afraid to choose a cold medication from the pharmacy. I have a terrible chest cold right now—lots of congestion and coughing. I contacted my doctor and the pharmacist both in advance befor buying an OTC medicine. You may choose to laugh here because they gave me conflicting advice on ingredients. 😂
Anyway, both you and Kristin are brave to me. You are trying a totally new medication that may end up helping many people.
Best wishes!
Hello, thank you so much you are very kind. I certainly wouldn’t laugh at your concern about medication. I have recently started a new insulin, I have been diabetic for 35 years. We tend to think think the medical professionals know best, but ultimately we know our bodies best. Suffice to say I have had a few side effects which I didn’t expect so I am reviewing this medication and so I do think I need to be careful too.
Sadly I cannot tolerate statins so this trial will hopefully help me and also many others. Take good care and thank you again. Judi
Judi,
Thank you for your response.
I truly hope that these trials do help to provide a new medication—other than statins that people can use. I have been taking 40mg Atorvastatin for almost 12 months now. I believe that my blood tests in the last four weeks show that this drug is helping to lower my cholesterol. I have been fortunate that I seem to have few side effects from taking it; however, in the last two months, I have started to have increased muscle pains.
Sometimes, I am terrible at taking meds. I try to take this medicine at 6pm each night, but I sometimes get confused and I know that I take two pills, or 80 mg. I don’t worry a whole lot about this because I know that many people take that dosage each day.
Anyway, I wish you the best in this clinical trial. You are truly doing good work to help others. Plus, I hope that you can get the diabetes medicines sorted.
Diana
Hello Diana, thanks so much for your reply. I do hope you are okay, and you are able to take your meds okay. If the muscle ache increases and gets worse please do speak to the your GP. Take good care, Judi x
Thank you, Judi. I hope that you are doing well today.
I am trying to keep an eye on the muscle aches and pains. I see my GP next week for my annual checkup so I will mention them to her.
I have had a bad head and chest cold for about a week. I opted to use OTC meds instead of visiting my doctor. The coughing is somewhat better now, but I have made my lungs sore from coughing so much. Seems like it is always something. 😆
Take care of yourself!
Diana
You too. I am okay, going to try some new meds so a bit nervous but hopefully all will be fine. Judi x
Thank you. Your post also reminded me how very different our individual approaches to taking meds are.
Each to their own!
.
Hope it goes well. My husband was turned down for this as his cholesterol wasn't high enough. If he had been accepted there would have been two of us in trials. Tomorrow is the last day of mine. One more input on phone as to whether In bad angina today and another questionnaire to fill in. In hope my participation has contributed as to whether it is better to stent a completely blocked artery or not. In my case I consider I was lucky as I had a stent and as I was taken off all angina meds my angina has much improved, only one little blip earlier this year. I know I have been able to get back to aqua aerobics with no angina which has been a bonus for me.
Brilliant news! 👏❤️
Only downside now is I have got to change GPS as my doc is closing at end of April. Having been with the same surgery since birth (neatly 75 years) it's come as a bit if a shock. That's over 5000 patients got to find a new GP.
I do hope you manage to find a new GP okay. That’s so sad. Take care, Judi
Just been and registered with new gp. Was realities easy thank goodness
Thank goodness x
hi, it was me who was on the trial, since my first appointment I have been contacted by the trial as the consultant in charge thinks I’m too much at risk to be given a placebo therefore I have been referred for the injection at NGH Sheffield. Hope everything goes well for you.
I got an invite for this trial. Not sure where they get our info from. I have reduced my LDL cholesterol down so don't need statins
Hey Heyjude. After trying or rather enduring 5 different statins. I’ve been put on an injection. But don’t think it is the trial one. My injection is twice a month. My cholesterol is not very bad, but is the cause of my family heart issues. So I know I need to take something. So hoping this one doesn’t make my joints ache or so constipated I feel ill and sick. And I can get the courage to inject myself … starting this Monday 😟🤪
I hope that this new injection works well for you! I know that you will figure out giving your own injections, but I totally understand your concern about learning to do so. Best wishes to you!
Awwwwww Smitty thank you. That is so kind of you to give me that boost of confidence. The people who have had to do this all their lives for diabetes I know will be saying what’s her problem and I know I will manage it because I have to. But it is still a bit daunting. I wish you well and thank you again 😽
Hi there, I do hope you get on okay with your injections. I hope it helps and does not lead to any side effects. Take care, Judy
Hello Judy. Thank you so much for your good wishes. I hope your journey with the trial goes ok for you. My body struggles with new drugs so my thanks goes out to you for putting yourself up for this to help others. Good luck.
Take care too x
hi hey Jude 31 l remember my cardiologist mentioning an injection for statins to me as l am one of those unfortunates that suffer side effects from them.
For me l just want to get my diet under control so that l don’t eat cholesterol making foods then l want to kick those drugs goodbye. Unfortunately had a cabg six months ago so l have to be sensible with my endeavours. Good luck with the trial l hope it works for you.
Hello Jedx, I do hope your recovery is going well. I struggle with statins to the extent that some mornings I could not walk easily. I now take Ezetimibe and which is a bit easier to tolerate though I do not take it every day. My cholesterol has come down, so I shall carry on. With the trial I may get a placebo so I shall wait and see how it goes. Take good care and my very best wishes for your dietary changes. I am trying to do the same so fingers crossed! Take care, Judi
Lowering cholesterol 
NHS to Pioneer Inclisiran Trial
Lowering a High Cholesterol 
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Cholesterol - again
