very high cholesterol

[pmac22]

I had a visit with my cardiologist (my hero as she was the one to suspect GCA two years ago while dealing with uncontrollable blood pressure and head pain and eye issues) so she knows my whole GCA story. Anyways my cholesterol has gotten very out of control even with taking Crestor, my cholesterol levels were normal before all this. She wants me to inject Repatha a biologic every two weeks. I already inject Actemra weekly. I’m a bit hesitant to start a second biologic. My question is has anyone else had to inject repatha and how did it work for you.

I am still on hydrocortisone tablets twice a day and Actemra weekly. Thank you.

Peggy

[123-go]

Hi. I haven’t heard of Repatha. You may hear from someone on this forum who has had some experience but joining the Healthunlocked forum for Cholesterol may produce some answers for you.

healthunlocked.com/choleste...

[pmac22 in reply to 123-go]

thank you, I will check that forum. From what I have been reading the side effects seem even scarier than Actemra!

[123-go in reply to pmac22]

I think we have to weigh up benefits v side effects of certain medications keeping in mind that some people get no side effects, some get one or several and others, rarely perhaps, get them all. In the end it should be your decision. I appreciate that it may be a difficult decision but don’t be rushed.

Please post a update in due course. Best wishes.

[PMRpro Ambassador in reply to pmac22]

You must always remember that the listed side effects are all that have been reported - as we say about the 82+ listed for pred, no-one gets them all and some people get none. I have few identifiable pred effects, none serious, and only raised cholesterol for Actemra.

[PMRpro Ambassador]

My cholesterol was high anyway but the Actemra sent it higher. I can't take statins so have been given Ezetimibe tablets which has brought it down some. I imagine here we have to work through a hierarchy of drugs since I would think Repatha is pricey - cheaper in Europe than the USA it seems.

[Suffererc]

cholesterol

[PMR2011]

Since you are two years in can you consider injecting Actemra every other week? The lower dose may be enough to stabilize cholesterol. Is the hydrocortisone because you are waking up adrenals?

[pmac22 in reply to PMR2011]

I will ask rheumatologist about Actemra . I got down to 3mg of prednisone and was having issues with exhaustion, muscle pain, stomach issues and dizziness. A blood cortisol showed very low cortisol. Rheumatologist upped my prednisone and referred me to an endocrinologist who switched me to hydrocortisone to maybe help wake up adrenal glands. I see her again next week and she will schedule ACHT (?) test.

[nallufl24]

I inject Rapatha once a month. My cholesterol came down 130 points within 2 months. I have no side effects from it whatsoever. Now after one year on Rapatha my cholesterol has stayed steady in the normal range. The only problem is expense. My insurance will pay 40% which still leaves me with a co-pay of $300/month.

[pmac22]

thank you, I took my first injection today.

[pmac22]

thank you, I have tried to be careful with diet. My lipids were fine until GCA meds. I have also been on a statin for the past year but when they tried to increase it I had too much muscle pain.