Alirocumab (Pralient) anti PCSK9: Hi I have NIMN... - Myositis UK

Myositis UK

1,287 members522 posts

Alirocumab (Pralient) anti PCSK9

Nearness profile image
1 Reply

Hi I have NIMN caused by taking statins, that is more or less under control with CellCept but the Prednilisone (Cortisone) that I am now down to 10mg messed up my type two diabetes and at my last stress ECG I was told I needed an Angiogram and then three stents.

The Cardiologists then tried to put me back on statins and ezetimibe to lower my cholestérol I refused the Statins and consulted the Consultant for the NIMN and she said I should not take the Ezetimibe either.

The Cardiologists then came up with an antio PCSK9 drug Pralient which is an injection (self administered ) in the thigh every two weeks.

I do not seem to be having any side effects and time will tell if it is lowering my cholesterol. Is anyone else taking this drug and how are they getting on with it?

Written by
Nearness profile image
Nearness
To view profiles and participate in discussions please or .
1 Reply
JeanBlackIsle profile image
JeanBlackIsle

hello. I also have myositis triggered by statins. This was proved by muscle biopsy in 2015. I have done as much reading about this as I can and will never touch anything related to statins or aimed at reducing cholesterol in any way. Avoid all those foods that claim to reduce cholesterol too. For the vast majority of people a slightly high cholesterol is not dangerous and it can be modified best by diet. Current research makes it clear that blockages in blood vessels are initially caused by inflammation and that this is linked to sugar intake . Cholesterol just joins in later and gets identified as the cause when if is in fact secondary.

I have had many treatments over the years since diagnosis. Prednisolone really messed up my T2 diabetes, also drastically altered my eyesight and made the muscle weakness worse. For the last 3 years I have had immunoglobulin infusions monthly and the muscle weakness slowed down. I had no side effects from this other than having to spend 2 full days each time in the hospital as an outpatient. However, different treatments suit different people. There is very little research into treatments for myositis and least of all for statin triggered myositis.

Good luck.

Not what you're looking for?

You may also like...

Anyone have Drug-induced Myositis?

Hi, I've had a diagnosis of MCAS (Mast Cell Activation Syndrome), but I had an argument with my...

Anyone get calcinosis?

I'm still VERY far from getting a diagnosis (thank you, NHS) and I'd have given up long since if it...

Can my GP help with tests?

I have a rheumatologist's referral, which will likely take 6 months. When it was made, it was...

Could I have dermatomyositis?

Firstly let me apologise for the length of this. I know it's not a good idea to ask for diagnoses...

DM and pain

I'd like to say, firstly, thanks for starting this site. I can't stand Facebook, although I know it...