Statins

Hi everyone, roughly 3 years ago after having a dreaded CAPS episode (hospitalised for 6 months in all) I was started on a then trial of hydroxychloroquine as is talked about by a fair few on here. My question is how many were/are taking a daily statin along side it....this was the trial and in my case it's continued.

I did find an article explaining it a long time back however I've not met anyone who's doing the same. Would having CAPS make the difference?

Danny

12 Replies

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  • I was on statins but not hydroxychloroquine.

    I stopped statins after reading a very good book that was recommended to me by my colleague Mary on this forum, Since stopping statins I have felt better, generally, and have lost 8 kilos in weight.

    Dave

  • Hi Dave

    I don't like the idea too much after reading about statins a while ago, I've stuck with it as the 'trial' was sold on the basis of both working together. As I said above it was trialed in my case after CAPS so don't want to fiddle. I believe it came about after my consultant rheumatologist spoke with Dr D'Cruz....

    I've not heard of anyone else on this 'trial' tho and not thought too much about it until recently.

  • I was put on statins after my stroke, even though I did not have high colestrol. This was before I was diagnosed with APS & SS. Once diagnosed (10 years later ) I was put on hydroxychloroquine - still on both now. It was questioned several times about coming off the statins but have been told no as it helps with the sticky blood. Still dont have high colestrol!!

  • Hi

    I'm the same, I've always ate well & kept fit, strong...was told at the time it probably played a big part in my survival, which I couldn't see at the time. My colestrol is also very good and was confirmed again recently at an annual stroke review appointment....still don't like the idea though...ill see if I can find the article I referred to.

  • Hi, they did try & switch me to a different kind a few years ago (presume cheaper) but made me feel sick all tge time so I went back to my original - pravastatin. Im an ambulance tech & dont come accross many patients on this statin! It was Dr D Cruz that put me on hyhydochroquine for my SS.

  • Hi there, many are on Statins, but they do not suit everybody, I have a few friends on them and they are dong fine, others have had side effects. MaryF

  • Thanks Mary, I'm fine on them as far as I know! I'm just one of those who doesn't like being on any meds but accept needs must.

    Danny

  • I wonder if you could say what the title of the book is I would like to read it. If you don't want to put it on here perhaps you would be kind enough to p.m me thanks

  • Hi sue, it was an Internet article/medical paper I found so not a book sorry for confusion. Reading is good way of empowering yourself about this condition, it's helped me loads.

    Danny

  • Thanks Danny I was referring to the book Dave mentioned.

    I won't take statins. I have a friend who is now having liver problems from taking them.I also feel uncomfortable about doctors receiving financial incentives to prescribe them!

    You are right about doing our own research & making personal decisions.

  • I have been on both for 5 years now - nothing yet as far as trouble.