@insomniacoffeelover

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insomniacoffeelover

Gilenya - 6 months scan new lesion

Hi all, I had my scan 6 months after starting Gilenya (Fingolimod) and it showed a new lesion. The rest were stable. The nurse told me not to panic as new lesions can appear when patients are between treatment (I was off treatment for a month between Tecfidera and Gilenya) so I will get a scan in another 3 months to see if there are any further changes. Has this happened to anyone else on Gilenya? thanks all, Gillian

DominicS

@DominicS

Hi, The best research suggests that guess is that scans capture c. 50% of disease activity. No direct correlation between MRI results and patient experienced issues either! Additionally, was it the same machine, have they changed the magnets or software for later versions? I.e: is it perhaps picking up stuff that wasn't previously visible? Perhaps you lay more still? There are an absolute ton of variables that can affect from one MRI to another. There is a current line of thinking that barring IRT - Alemtuzumab, and HSCT aside - that MS smoulders away. Sometimes seen, sometimes unseen. Isn't uncertainty fun? Sorry not to be of greater help. The message is don't stress too much until you have absolutely nailed the answers to the above and more. Even then it is a progressive disease. Gilenya isn't a cure, it is chemical brakes. Best, Dom

Stumbler

@Stumbler

@insomniacoffeelover , the lesion may well have started shortly after you began Gilenya or before it was effective. The next scan will provide some answers.

insomniacoffeelover

@insomniacoffeelover

Thanks dominics and stumbler! @mermaidia11, yes I have had a lumbar puncture (ouch!!). I actually was on Tecfidera and then had to switch to Gilenya. They told me there may be a new lesion from when i was ‘between’ therapies so I hope that’s what it is. I’ve been on the Gilenya six months now though so hopefully the next scan in three months is clear. Thank you for your lovely answer 🤗 has this happened to anyone else on here?

cammo

@cammo

@insomniacoffeelover This also happened to me when starting Gilenya (from no DMD). 6 months after starting I had about 4 new lesions (but no clinical symtoms... go figure). The neuro said this was not conclusive of Gilenya not working because it takes about 3 months for it to kick in. On the plus side I haven't had any new lesions since the Gilenya did "kick in" and some have become smaller... The drug works for me (however my liver doesn't think so)... hope the same for you.

insomniacoffeelover

@insomniacoffeelover

@cammo, thanks for getting back to me. So you had new lesions on your scan 6 months after starting Gilenya? I just have 1 but it was still a kick in the gut. How long did you wait to have another scan to see if the Gikenya had fully kicked in? I'm waiting another 3 months to have another scan to see if the Gilenya is really working or not so that will take me up to June. How long have you been on the GIlenya now?

cammo

@cammo

@insomniacoffeelover Yes I had new lesions after starting Gilenya. It was the first (and only) DMD I have been on so far as was only diagnosed in 2016. The new lesions were not causing any symptoms (that I could tell) so I was surprised. We did another MRI 6 months after that one and there was no disease activity. So since June/July 2017 I have been lesion free on the drug. It has been almost 2 and a half years on Gilenya now.... It seems like it is controlling the beast. I have raised liver enzymes which is a common side effect for the drug. The enzymes are supposed to stabilize after 6 months or so, but mine haven't. My neuro isn't concerned with the liver results and thinks the risk of relapse from stopping the drug would be more detrimental than continuing with the dodgy LFT results. Just have to cut out those boozy weekends.

insomniacoffeelover

@insomniacoffeelover

thanks @cammo, really helps to talk with someone who also had lesions after 6 months on Gilenya. hopefully it works for me too when it kicks in. will find out in June or July! thanks guys, Gillian

cammo

@cammo

@insomniacoffeelover It is worrying when those white spots show up on the MRI and you are taking medication which is supposed to control it. I feel for you. The bigger problem is stopping Gilenya. Studies now show a highish probability of rebound relapses so neuros are reluctant to stop the treatment. Anyway you will be ok. Your next MRI will be clear with no change and you can continue to live a happy life. Sometimes I forget I have MS it is being controlled so well with the drug.

opti19

@opti19

Hi @insomniacoffeelover I see you were on Tecfidera and moved to Gilenya 😕 just wondering how you're getting on ? I was diagnosed in January and was on Tecfidera for 4 weeks. I had an allergic reaction at the weekend and now they're talking about Gilenya. Needless to say the possible side effects have me worried as the last ones were pretty awful Any advice welcome x

insomniacoffeelover

@insomniacoffeelover

Hi @cammo. That is fantastic, so it started off a bit patchy for you but is working for you now thy it has kicked in. @opti19, other than the slightly disappointing start, I have found the Gilenya absolutely fantastic. I didn’t have any upset tummy or anything when I started it and now I have no side effects from it at all. I still feel my MS obviously but it’s toleratedextewmely well on the whole. I mainly didn’t like taking the Tecfidera as I had extreme flushing every day which was quite embarrassing in work!

opti19

@opti19

Hi @insomniacoffeelover glad to hear it's working out for you. Following my allergic reaction to Tec I'm just a bit anxious about starting another one. Good to know it's working for you x

insomniacoffeelover

@insomniacoffeelover

@opti19 I fully understand, I was exactly the same as this is the third treatment I’ve been on. All you can do is try and if it doesn’t work out there are other treatments you can try. Please let me know how you get on, I’ve read and heard that the Gilenya really is tolerated very well. X

insomniacoffeelover

@insomniacoffeelover

hi @opti19, how is the Gilenya going? x

insomniacoffeelover

@insomniacoffeelover

hi @cammo, I forgot to ask, with the Gilenya having kicked in and having no new lesions, do you ever still have bad patches where you just don't feel great or have tingling or anything?

opti19

@opti19

@insomniacoffeelover hi ! I picked up my prescription yesterday. All my blood work is in and skin mapping done so my appointment is Tuesday. 6 hours hopsital date with an ECG machine. Everything crossed. Feeling a lot better at moment. Started gym this week and Camino plans underway. I've got this 🤞 hope you're doing ok x

insomniacoffeelover

@insomniacoffeelover

hi @cammo, that's fantastic, it's been tolerated really well. let me know how you get on x

insomniacoffeelover

@insomniacoffeelover

hi @opti19, that’s fantastic, it’s been tolerated really well. let me know how you get on x

cammo

@cammo

@insomniacoffeelover I do have times when I am very tired but I also have two toddlers who dont sleep in their own beds very well. I usually put it down to being a father and not the MS.