Aa
Raised Cholesterol
Just to give a quick update on oral drug trial I am on in UK (ACT-128800) which is suppoed to be similar to Gilenya. For the many newbies who have only just joined and may be interested I am keeping a detailed (sometimes boring and a little repetitive due to nature of repeat tests) journal which give an indication of what may be involved in a similar drug trial it anyone considers it.
All has been going well and the regular monthly tests (neuro consultation, MRI, eye, lung and heart checks and blood work) have been fine. However last month my neuro told me that my cholesterol has been going up slowly and steadily since I started the trial. At the same time I started going to the gym and swimming twice a week and I hav been eating a healthy diet. I am now convinced I am on the drug rather than the placebo (and my neuro thinks so too and says that several other trial patients have had the same problem) but am not sure what else I can do.
I have started this week taking the cholesterol reducing drinks, using the flora spread and milk and hope this may help but it feels like I am having a battle as I have never exercised so much or been so careful with my diet. i have also found it very difficult to lose weight although my presonal trainer measured me yesterday and said I have lost and inch in all the relevant places so exercise must be doing some good.
My cholesterol has gone up from 5.5 to 6.8 over 4 months. I do not want to go on statins and I do not want to come off the drug trial as next stage is fast approaching in March which is the 2 year study. Any suggestions welcomed.
Love Sarah x :)
O.T. Very, very excited as I have booked to go with my parents to see my brother and his family in Sydney for Easter. They live in Queensland (where the cyclone is fast approaching today) and are flying down for a holiday. I shall be very nervous about the long journey as I have never flown this far before but having MS has made me do this sooner rather than later. My husband will be left in charge for 3 weeks while I am away!!
All has been going well and the regular monthly tests (neuro consultation, MRI, eye, lung and heart checks and blood work) have been fine. However last month my neuro told me that my cholesterol has been going up slowly and steadily since I started the trial. At the same time I started going to the gym and swimming twice a week and I hav been eating a healthy diet. I am now convinced I am on the drug rather than the placebo (and my neuro thinks so too and says that several other trial patients have had the same problem) but am not sure what else I can do.
I have started this week taking the cholesterol reducing drinks, using the flora spread and milk and hope this may help but it feels like I am having a battle as I have never exercised so much or been so careful with my diet. i have also found it very difficult to lose weight although my presonal trainer measured me yesterday and said I have lost and inch in all the relevant places so exercise must be doing some good.
My cholesterol has gone up from 5.5 to 6.8 over 4 months. I do not want to go on statins and I do not want to come off the drug trial as next stage is fast approaching in March which is the 2 year study. Any suggestions welcomed.
Love Sarah x :)
O.T. Very, very excited as I have booked to go with my parents to see my brother and his family in Sydney for Easter. They live in Queensland (where the cyclone is fast approaching today) and are flying down for a holiday. I shall be very nervous about the long journey as I have never flown this far before but having MS has made me do this sooner rather than later. My husband will be left in charge for 3 weeks while I am away!!
Best Answer
What are the rules of the trial? Are you allowed to make changes in your drug or lifestyle regimen? If your diet and exercise have improved and the total cholesterol keeps rising, wouldn't that indicate the drug may be causing your liver to produce more cholesterol?
I'm surprised you were given any details of a potential trend among participants. I must admit I haven't read your journal but study protocol seems a little loose.
Guess I'm not much help. Looks like I have more questions than answers. Sorry Sarah :(
Congrats on the trip planning. Do you think you'll have enough time to husband proof the house before you leave?
Mary
I'm surprised you were given any details of a potential trend among participants. I must admit I haven't read your journal but study protocol seems a little loose.
Guess I'm not much help. Looks like I have more questions than answers. Sorry Sarah :(
Congrats on the trip planning. Do you think you'll have enough time to husband proof the house before you leave?
Mary
sorry to hear you're having problems with your cholesterol, what has your neurologist suggested? you're doing everything you can to keep it low but if the drug has this side effect you might have to consider medication to lower it if you stay on the drug...and omg...Sydney? FABULOUS!!!
Val x
Val x
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It has been as high as 8, but usually sits around 6.5 untreated, and I get it down to 5.5 with the above changes.
Have you checked which component of your cholesterol is high? You may find it's the HDL's rather than the LDL's, which may actually be a good thing.