New DMD’s- A Little Overwhelmed!
Hi all,
Feeling a little scared after finally managing to read all the DMD booklets last night! So I was offered Fingolimod or Tecfidera. I chose Fingolimod without reading fully about all possible side effects. The side effects seem a lot more extensive -
Cough, headache, back pain, diarrhoea, increased risk of infections & levels of liver enzyme, decrease in WBC’s. The following are the ones that really concern me- cases of basal carcinoma, a kind of skin cancer ( slow growing skin cancer that almost never spreads to other parts of the body or becomes life threatening BUT can be disfiguring if not treated promptly! May also cause less common ( 1 in 100) Macular Oedema, a swelling in the back of the eye which can affect vision, I’ve already suffered the awful O.Neuritis :(
The latter 2 side effects are not listed with tecfidera. Having 2nd thoughts / doubts about what I’ve chosen now. Going in to hospital next Thursday am for Gilenya/ Fingolimod. Any advice anyone has/ thoughts/ personal experiences would be greatly appreciated. Have left a message for MS nurses to call me back as having doubts about my chosen option.
Thank you guys
@indygirl , Gilenya does seem to be a well-tolerated Disease Modifying Therapy (DMT). The documented list of side-effects can seems scary, but the manufacturer is legally obliged to detail every possible side-effect that has ever been experienced on their DMT. Yes, it is an immuno-suppressant, which can leave you more vulnerable to the common bugs which go around. And, yes, it is a powerful drug, which may have serious side-effects. You will be regularly monitored for these risk factors. If you were to breach any of the acceptable risk thresholds, then your use of this DMT would be reviewed. I hope this makes you feel a bit more comfortable with your choice of DMT.
@stumbler Thank you as always! I’m just in 2 minds as to whether choose Tecfidera instead, as possible side effects don’t seem as harsh as the main two that concern me with Fingolimod. 😳