Research study

[Cazz1954]

Has anyone been invited on the Orion -4 research study for the new cholesterol lowering injection

[MichaelJH Heart Star]

It has been discussed before. Here is a link that has another link within the thread - healthunlocked.com/bhf/post...

[Cazz1954 in reply to MichaelJH]

Thank you Michael. When I saw the invitation for the trial I was excited, now I don’t know what to think. I have been on statins Since 2012 But they didn’t stop my heart attack, plus I have HF, maybe that’s why I have been chosen,

[NorthantsSteve]

Hi Cazz. I was invited into it but couldn’t participate as my cholesterol was too low.

[Cazz1954 in reply to NorthantsSteve]

That’s a shame. You got all worked up to do it , then on the day you had the finger prick test and your cholesterol was too low, I think mine will probably be too low as well, since my heart attack I’ve been on 80mg artovastatin, and cholesterol has been quite good.

[NorthantsSteve in reply to Cazz1954]

How long since your HA Cazz? Mine came down to 2.8 so they reduced my Atorvastatin to 40Mg after 2 years.

[Cazz1954 in reply to NorthantsSteve]

September 2018. Wow that’s a good cholesterol level. I was on 40mg before the HA

[NorthantsSteve in reply to Cazz1954]

Mine wasn’t very high to start off with though. Did the additional 40Mg make much of a difference?

[Cazz1954 in reply to NorthantsSteve]

Not too much of a difference. Don’t know why it was doubled. Apart from having FH which is a faulty gene

[NorthantsSteve in reply to Cazz1954]

They might put you back down after 2 years in that case (2 years on highest dose after a HA is the NICE recommendation.)

I think the lower limit was 4mmol/l.

[Cazz1954 in reply to NorthantsSteve]

That would be good. I’m on enough medication as it is. Roll on September

[84green in reply to Cazz1954]

My cholesterol went from 5.0 to 2.8 after 14 days of 40mg Atorvastatin and drastic lifestyle change - have lost 35 pounds since Mid January. Cholesterol /HDL ratio: 2.1. Waiting to see where it settles after a few more weeks (been on it for four weeks now).

[Manhattan1]

my cholesterol level in Sept 2019 was 7.4 now on 40mg simvastatin

[Cazz1954 in reply to Manhattan1]

Have you heard of the Orion -4 trial

[Manhattan1]

nope.. and haven’t been contacted about it

[Cazz1954 in reply to Manhattan1]

Ok . Not found a lot of information about it, will have to ring them and find out

[Calliope153]

You should have been sent a booklet with all the information in it.

isrctn.com/editorial/retrie...

should link you to an online copy. I was invited but declined as I had reduced my cholesterol to 3.7 .

[Cazz1954 in reply to Calliope153]

Yes thank you calliope for the leaflet. But I thought the lovely people on here would have more information, Michael sent me a link from a few months ago. One person said their travel insurance would be affected, but not heard of anyone actually started the trial. I would of liked to do it as I have FH. It’s good to hear of other people’s thoughts

[Calliope153]

Lots (around 6) of my rehab group are on it. So far (about six months in) they are all very happy on it but they all have cholesterol which stubbornly stays above 6 even though they have been on statins for years. Of course they don;t know whether they are taking it or the placebo. If you like Googling you can read all the reports from the Orion 1 onwards studies and what they concluded. It;s not only travel insurance that can be affected - any private health insurance can be affected too. One person is convinced she is on it as her cholesterol has dropped very quickly...... I got my choloestrol down from 6.5 when I had my heart attack to 3.7 in three months by really strict diet and statins. I seem stuck at that level now as just had annual test and it was the same.....

[Cazz1954 in reply to Calliope153]

That’s very interesting. My cholesterol has come down since being on 80mg but apparently it’s reduced back to 40mg 2 years after heart attack

[Cazz1954 in reply to Calliope153]

I have been controlling my diabetes by exercise and diet so perhaps I should put more effort in. But the FH is a faulty gene that runs in families, Will ask my GP I think

[PeterJemmett]

I was invited, went down for a finger prick test and my cholesterol was too low!

[Cazz1954 in reply to PeterJemmett]

That was a shame at least you tried

[PeterJemmett in reply to Cazz1954]

Not all was lost, it at least made for a paragraph in my blog!

“During July I was invited to become a guinea pig in a 5 year study (Orion-4) run by the University of Oxford testing a new unlicensed cholesterol lowing drug aimed at reducing the risks of heart attacks and strokes in people already with these conditions, qualifying as I had a heart attack and a history of Hypercholesterolaemia (high cholesterol). After much deliberating I came to the conclusion that the benefits outweighed the risks and decided to go for the assessment at Wycombe hospital. This consisted of a finger prick test and it turned out that my cholesterol was now so low that I couldn't take part in the study, in fact my cholesterol was lower than many of the nurses in the department!”

peterjemmett.blogspot.com/2...

[Cazz1954 in reply to PeterJemmett]

Hi peter, i have mixed combined familial hypocholestemia so thought maybe the trial would be good for people like me. But just getting more confused

[Alison_L]

Hi Cazz, I was invited, but a recent blood test showed my cholesterol is 3.9. I emailed them and they said I might still be ok if it was 4.0 on the day of the finger prick test. I decided I didn't want to know if it had gone up again!

[Cazz1954 in reply to Alison_L]

Yes mine was the same last time. It’s never been that low before. So not sure I will do it

[Sparkeybigshot1]

If you felt as ill as I did on statins you certainly wouldn’t be volunteering for an injection.

The more I read about the subject the more I believe our bodies need cholesterol.

[BreakThrough56 in reply to Sparkeybigshot1]

Hi Spikkybigshot. I am the same. I felt terrible on Statins and tried all the alternatives and felt no better.after nearly a year.I was invited to go on the trial but did not want to feel that poorly again. I know my cholesterol is high at 7.8 but do try and get it down wirhout much success.

[Hidden in reply to BreakThrough56]

Hi breakthrough

Me too!

I tried a short 12 week course of rosuvastatin in early 2017

Stopped because of muscle aches

But, instead of the aches going away after 3 years of stopping

As they do in most people

They have progressed!

I can honestly say that taking those statins was THE BIGGEST MISTAKE OF MY LIFE

They are an evil medication

Alps Holiday

[Milkfairy Heart Star in reply to Hidden]

If you stopped taking statins 3 years ago have you considered that there maybe another cause of your muscle aches?

[Hidden in reply to Milkfairy]

Hi milk fairy

I was a lifelong competitive cyclist - see my other posts please, if interested

Never ever had muscle aches, even after 7 days of riding 100 miles a day in the Alps

Tired, yes of course absolutely - but ACHY - never!

Then along came statins and within a week I started getting aches

That haven't gone away, even after stopping them 3 years ago

So, statins, for sure, are the cause of my aches

From all the fora posts that I've read, on here and elsewhere, it seems that

About 80% of people who take statins have no problems at all

Of the remaining 20% who have problems, which are usually muscle aches, their aches resolve after stopping

However, for a very very few, about 1%?, like me, the symptoms are there forever

That's why I say they are an evil medication

Alps Holiday

[Milkfairy Heart Star in reply to Hidden]

Hi I am sorry to hear of your experience.

I live with a type of angina which is resistant to treatment so I acknowledge how challenging it can be to live with pain.

I was too was very fit before my particular heart condition developed.

Have you considered coincidence and the possibility of other causes of your aches such as fibromyalgia ?

It is your personal belief that statins caused you harm. We are all entitled to our beliefs however is it appropriate to encourage others to stop taking their medication without discussing this with their doctor first?

[Hidden in reply to Milkfairy]

Thanks milkfairy

Btw I did discuss stopping the statins with my GP bcause of the aches

And that I shoud never have been put on them in the first place, as my cholesterol was 2.8 pre statin

He did not take me off them, I had to do it myself

So, my point is this, my GP absolutely should have taken me off them

Even the patient medication leaflet advises you to stop them

Thanks

Alps Holiday

[MichaelJH Heart Star in reply to Milkfairy]

A friend took early retirement. His intention was to spend quite a bit of time working on his (small) classic car collection. However, the odd ache and pain became considerably worse limiting him considerably. After numerous tests he was diagnosed with Fibromyalgia. He now is on medication but has good and bad days. He lives in Ireland and has never taken, or been recommended a statin.

[MountainGoat52 in reply to Sparkeybigshot1]

Yes, I declined the trial on the ground of severe allergy to many medications. I cannot tolerate the 3 usually prescribed statins and now take just 10mg of Rosuvastatin every other day. I have always had a cholesterol level around 4 and it now down around 3 which is acceptable as far as I am concerned as I suffer no side effects from the medication. To decline the trial was a no-brainer.

[Goldfish7]

yes - didn't fancy it. I had very bad reactions to statins and the thought that I could be stuck with similar symptoms for months put me off. Also you cant access your health records in relation to the testing as they are owned by the drug/research company so no way would I be involved.

[Cazz1954 in reply to Goldfish7]

Yes I can see why you wouldn’t want to take part. It seems cut and dried for a lot of people

[Picass]

If you are on the placebo are you at higher risk of having a heart attack if it makes your cholesterol higher than what it should be

[Lezzers in reply to Picass]

I believe you continue to take your statin whilst on the trial, I don’t think you’re at any more risk than normal.

[Cazz1954 in reply to Picass]

Apparently you still carry on with your usual medication, Which I couldn’t understand if your already on statins

[Lezzers in reply to Cazz1954]

I haven't really looked into it too much but I don't think it's quite the same thing as a statin. But presumably you're eligible if your statin isn't lowering your cholesterol as much as your medical team would like! My husband has said he'd do the trial if he was able to. Unfortunately, unless we do these trials medical science would never move on.

[Cazz1954]

Thank you I was going to wait for my GPS advice but I can’t speak to him for another 2 weeks so after all the comments I don’t think I will do it.

[Cazz1954]

When I got the letter I was really excited. Now I think I have thought about it too much

[Lezzers in reply to Cazz1954]

That's understandable with all the different advice you're getting on this post! Do you have to attend an interview session? If so, why not write down all the questions & concerns that you have, then you can discuss them at the interview and make your own mind up then if its not for you then it's not for you.

[Cazz1954 in reply to Lezzers]

The first appointment they do a finger prick to check your cholesterol and if it’s under a certain level you are excluded from the trial. But a very good idea to ask questions. Thank you

[Sparkeybigshot1]

🐹

[thehypnotist]

I was accepted on it due to intolerance to stations. However, my reading was at 3, due to my diet.