Hi to you all. Hope your are as well as you can be.
I’m changing from Tysabri to Fingolimod very soon and would just like to hear anyones thoughts on the matter.
I certainly won’t miss the Tysabri injections and 6 weekly trips to the hospital. I would really appreciate hearing your experiences on Fingolimod.
Many thanks for reading.
Equus
I am also interested in getting some views on Fingolimid and Tecfidera also. My neuro has suggested I change from Copaxone to one of these 2 drugs- so would appreciate any views/opinions to aid my decision.
Cathy
Hi Equus and Cathy
I’ve been on fingolimod for almost 18 months now. My neuro suggested I switch to something else after Rebif stopped working for me and I had two disabling relapses within 3 months in 2013. We discussed my options (Copaxone, Lemtrada - which was still under trial at the time - or fingolimod) and we both agreed that fingolimod sounded the best.
I don’t miss injecting at all . I’ve had minimal side effects - some slight upset stomachs within the first few weeks but that soon settled down. At one point my white blood cell count was very low but my neuro was keen to keep me on the drug whilst I was feeling well. By the next 3 month blood test, this had self resolved. Since this is how the drug is meant to work my lymphocytes are always low and this is normal for fingolimod. Apparently, one side effect of this can be that you are more prone to infection but I picked up a few viruses in the first few months and now I’m fit as a fiddle (crosses fingers).
Best of all - I haven’t had a hint of a relapse in the whole time I’ve been on it.
It does take a while to get started on the drug. There are quite a few tests to be done. These include blood tests, including checking if you are immune to chicken pox, an ECG and possibly further tests if there are any abnormal results from that, possibly a base line eye test. Don’t be surprised if this all takes several months.
Then you have to wait until they have a slot available for your first dose monitoring. You have to be monitored for 6 hours at a hospital when you take the first dose because it can lower your heart rate. This is (for the majority of fingolimod users) just 6 hours of boredom. I used it as a chance to catch up on reading, watching films, puzzle books and even took a nap. My heart rate barely dropped and it soon came back up when my handsome neuro popped in to check up on me .
There are a couple of closed Facebook groups for fingolimod users. One is worldwide and one is for UK and Ireland only. If you search fingolimod on Facebook (if you use it) you will find them. You can get loads of help/opinions on there and see what other users experiences of it are.
Tracey xx
Hi
I would just echo what Tracey has said. I’ve had no side effects at all and have been completely relapse free since I started in April 2013. Switching from Rebif to Fingolimod was the best thing I’ve ever done.
Good luck
JZ
hi
i switched from copaxone to tecfidera in february.
had a dodgy tum at first and even vomited when i went on the higher dose but it was easily resolved by having my tec halfway through a meal.
love not having to jab myself every day!!
carole x
Thank you for the replies-will keep researching both drugs
Cathy
Hi just want to say a big thank you to all of you for taking the time to read and reply to my post.
It is very much appreciated! Wishing you all the best.
Kind Regards Equus