Sleepless Nights

[Swimming20]

Hi ..l have been on Tocilzumab for 15wks which is working for me ..l now been told l have side effects of high cholesterol so have been on satins which is keeping me awake at night for hours ..does any one else suffer not sleeping with satins ..

[Hidden]

I take statins these don’t cause my sleep problem. I have just start baricitnib and I am having trouble sleeping. I know this drug can cause increase cholesterol so Im taking flaxseed and fibre powder to try and keep it down only time will tell if this works.

I was advised to take my statins last thing at night.

[Swimming20 in reply to Hidden]

Yes l was told that ..l will try the flaxseed thanks x

[Mmrr]

My cholesterol has risen markedly since being on toficitinib but I have resisted taking statins so far, opting to try dietary measures first.Have you spoken to your GP about other options and your risk factors with medicine induced high cholesterol?

[Swimming20 in reply to Mmrr]

Yes have spoken to doctors he said take it on a morning but no different..l have started s high cholesterol diet .now trying to get a cholesterol test x

[Mmrr in reply to Swimming20]

Statins protect better for secondary episodes...if you have already had a stroke or heart attack they protect from having another one. They are less effective in preventing primary / first episodes. My GP did an electronic risk assessment on me, I came out borderline requiring statins, so I opted not to take them. Rheumatology were supportive of my choice, it might be worthwhile getting their thoughts.Best wishes.

[Hidden in reply to Mmrr]

I am on statins due to a family history of heart problems. We make our own cholesterol it’s a certain factor can’t remember off hand . I was told they actively encourage statins not this medication.. another difference of opinion between our consultants

[Allije]

Hi Swimming20 I have had a very similar experience with raised cholesterol due to Tocilizumab and then accompanying sleeplessness due to statins.It took me a long time to work out why I was having such wakeful nights as I hadn't heard about connection to statin. Presently I am taking a statin every 2nd morning and this seems to be working out ok although I haven't had a blood test to check cholesterol.

I went through a period of not taking statins but GP was getting frantic due to dangerously high cholesterol ☹️.

Interestingly when it was discovered that my cholesterol was high several years ago I was sent to various specialists including a genetic consultant and none would accept that it was Tocilizumab!

Tocilizumab has been wonderful for my RA so I really don't want to change to another biological at this time. However, as I am keeping quite well it has been suggested that I take it fortnightly so this too should help with cholesterol- hopefully.

These are my strategies at the moment and perhaps there is something in here that can help. There is nothing worse than endless sleepless nights. It can be so debilitating.

[Swimming20 in reply to Allije]

Hi ..Thanks very much for your reply ..l found it very interesting ..yes Tocilizumab works well for me also ..have been on 2 different types of statins and still. No sleep doctor has said have a 2 wk break from them then he will try me on me on a another one so am on a low cholesterol diet am getting my bloods done this wk ..as if we haven’t enough to put up with ☹️I will let you know how l get on thanks once again Anthea x

[Allije]

Yes please let me know how you get on. It seems we are always searching for ways to manage our condition and associated side effects. 😔