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!!
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.