@Leogirl

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Leogirl

Gilenya

Hi, I just wanted to ask how often anyone on Gilenya have MRI’s. I was previously on Tysabri and I had them every four months. I changed to Gilenya in 2016 and I have been having them every four months as well. After my last visit to the clinic I received an MRI appointment for a years time. I queried this with the Ms nurse and she said only people on Tysabri have MRI’s every four months for safety reasons. I’m confused as the doctors I seen in clinic arranged them.

WendyHills

@WendyHills

I have one once a year I’m on cladribine hope this helps x

Gijs

@Gijs

On Tysabri - every six months my head, every year head+c spine.

Stumbler

@Stumbler

@leogirl , it seems it depends on how great the risk of PML is in your case. This risk is greater with Tysabri, hence the more frequent monitoring. However, it would be worth asking the question next time you see your Neuro.

Leogirl

@Leogirl

Hi Wendy, thanks for your reply. I just looked up that drug now and it looks promising. I don’t think it’s fully approved here yet. I had a quick look at your recent posts and see that you are doing ok on it which is great. Hopefully that will continue. It’s so hard to know what drugs to take. It’s all trial and error. Do you have a good Neurologist? Sorry to see you don’t like the MRI’s. I think I am just so used to them now after 23 years. It the noise that bothers me the most. I wear ear plugs and that helps a bit. I suffer from fatigue and back pain so at least I can lie down during the MRI. I will add you as a friend as I would be interested to see how you get on on the Cladribine. Ann Marie X

Leogirl

@Leogirl

Thanks Stumbler, I was thinking that, unfortunately I don’t see the Neuro much only one if his doctors. I have asked about Pml before and they don’t seem to think there is much of a risk for me. Not sure how they think that. I used to get the JC Virus test when I was on Tysabri but I don’t get it anymore. My MRI’s have been stable since starting Tysabri in 2014 and Gilenya in 2016 thankfully.

WendyHills

@WendyHills

@leogirl I was terrified at first of taking it and wanted to go on a lesser DMT but my neurologist said that my highly active lesions meant we had a small window of opportunity and we needed to hit it hard so I trusted her judgement and went for it took me a long time to make the decision. I was on a few other sites but removed myself from them because reading about it was only scaring me further but it has been good so far so fingers crossed I have only had small sensory issues since my original relapse but nothing big so hopefully this wards it off for a time. I too have lots of fatigue and numbness and weakness in my legs. I know cladribine has only just be passed for prescribing in the uk recently so hopefully it will filter out further in the near future x

Tibs74

@Tibs74

Hi, I was having MRI's every 6 months but have not had since February. In October I met my neurologist and out of the blue said my JC virus levels are now in the at risk zone or PML so I need to come off gilenya. I took my last one today (as have been waiting 3 months for an MRI) and due my 1st course of lemtrada at some point next year but no-one seems to know when, I could be off everything for a lengthy time by the looks of it for the first time in 20 years ....Could be interesting! I felt like I was nagging every time I questioned when my next MRI was, but now I'm in an at risk level I feel it is justified to keep on top of it. I was also having a special blood test that was couriered to Denmark (?) every 6 months for PML checks but that was stopping this year, saying I only needed MRI scans. Keep expressing your concerns, as i was led to believe pml is very slow progressive so if noticed early there is a better chance of dealing with it. Not much hope if only spotted 12 months later. Good luck and keep strong x

cammo

@cammo

@leogirl I am on Gilenya and my Neuro had me on 6 monthly MRIs. There has been no change in disease activity over the past 2 MRIs so he has moved me to annual MRI (head and spine). Seems a little long to me as I have had new lesions without clinical symptoms in the past and like to know what is going on in my noggin.

Leogirl

@Leogirl

@WendyHills. That’s great you have a good Neurologist who you trust. Is the cladribine an infusion or a tablet? X

WendyHills

@WendyHills

@leogirl It’s a tablet don’t think it’s available as infusion

kimiblanc

@kimiblanc

Hi, I've been on gilenya for nearly three years now. I have an annual scan but maybe it depends on your hospital?? Kim

Leogirl

@Leogirl

@Wendyhills. Tablet is much better. I had to come off Tysabri infusion as I found it hard to sit Whole getting the infusion.

Leogirl

@Leogirl

@gijs Thanks for your reply, it’s great to see you are doing so well.

Leogirl

@Leogirl

@Tibs74 thanks for that info, Sorry to hear you are in that suitation, that is what I don’t want to happen. I will ask them about it at next meeting. In the meantime I might ring Ms Nurse and ask her. When I was on Tysabri I was very concerned about PML but at least I was having regular JC virus checks. When I moved to Gilenya these stopped but I was happy I was having regular MRI’s. Now that these have changed to a year I am concerned. Its all so confusing and exhausting😬. You are definitely justified in bringing this up. Keep nagging them even though you shouldn’t have to.

Leogirl

@Leogirl

@Tibs74 Hi I read your post again and am woundering how they know your at high risk of PML If you have not had an MRI or JC virus blood test ( this is the one that’s sent to Denmark) recently. 🤔

Leogirl

@Leogirl

@Kimiblanc Hi, ya I think it does, how are you finding it?

Tibs74

@Tibs74

Hi @leogirl My last MRI was back in February and blood test few months later. I was was questioning why I had not been given a date for my next MRI in august when I got called in to the neurologist at the beginning of October, and was told my JC virus levels were now in the 'at risk' zone, so they wanted me to come off gilenya. Finally having MRI in January so will have been off my gilenya a month by then. Planning to book me in hospital for lemtrada, but I have a feeling it will be a fair few months. I'm all good it's just frustrating sometimes. I have been on gilenya 6 years, and it's been awesome - slightly gutted to have come of it ....but hey, onwards and upwards 👍 x

Leogirl

@Leogirl

@tibs74 thanks for that info. when I was on Tysabri I was very concerned about PML but at least I was having regular JC virus checks. When I moved to Gilenya these stopped but I was happy I was having regular MRI’s. Now that these have changed to a year I am concerned. I will bring it up at next appointment. It’s all so confusing and exhausting😬 it’s such a pity you have to stop it. Hopefully you will get good news in January when you have the MRI and get a date soon for starting Lemtrada. Take care and let us know how you get on. X

Leogirl

@Leogirl

@cammo, I was lucky to have MRI’s every 4 months up to now, like you said it’s nice to know what’s going on. I usually only have the head and neck done. I did have the thorax spine done a few years ago. Do you have the whole spine done every time?

cammo

@cammo

@leogirl Yes they do brain and spine every time. It seems like an extra 30mins in the noisy machine. But I dont mint. I kind of find it meditative to be in the MRI.