@Firefrau26

Last reply

Firefrau26

Stopping Gilenya to start Mavenclad

Stopped almost three weeks ago and have started to have pain all over and incredible mood swings. Has anyone experienced this. I work full time as a nurse and have found it almost impossible to organize my thoughts since stopping.

aabreu

@aabreu

How long before you start the cladribine?

Firefrau26

@Firefrau26

I had blood work done today because my counts are too low. Whenever my total count goes above 1. Then Iā€™m good to go.

Stumbler

@Stumbler

@firefrau26 , stopping Gilenya does seem to be problematic :- https://multiplesclerosisnewstoday.com/2016/05/10/rebound-effects-after-fingolimod-cessation-need-further-studies/ It's a shame that we don't seem to have progressed over the last 12 months....... :???: Just keep your Neuro appraised of what's going on.

mmhhpp

@mmhhpp

@firefrau26 Hi, I am in the same situation as you, I stopped gilenya in December and my lymphocytes are still 0.7 . Unable to start cladribine because they are not one yet. During this time I lost part of my hearing in one ear which has partially return I have also double vision which come and goes . My body mass index is 18, I was quite lymphopenic while using fingolimod lymphocytes were 0.2 . So much waiting ......now they want to run another mri before cladribine which means another four weeks waiting ..... truly desperate. I relax myself thinking that any relapse will eventually recover and SPMS will carry on doing its damage regardless medication . The point is that we do not know how good cladribine is for S PMS it is a matter of trying ......

EdgarLeroy

@EdgarLeroy

The hope is that since cladribine gets into the brain and menengies and kills lymphocytes, the neuron destruction will slow. Time will tell.

melissag

@melissag

HI @firefrau26 Was just hoping to chat about Mavenclad, were you able to go through and have the treatment? I'm being offered it now and am considering it Thanks!

arknat

@arknat

While we wait for its (Mavenclad) FDA approval in the US ....... :(

RobL

@RobL

Hi i have also been recommended Mavenclad for very active RRMS. I am also apprehensive in regards to side effects. Not sure what to do! šŸ˜•

Stumbler

@Stumbler

@robl , apprehension is to be expected. But, these medications have been through various trials, to understand any risks and prove effectiveness, before coming to market.

RobL

@RobL

Thanks stumbler. Been told its strongly recommended so best to go with what theyre saying!

ScienceGeek

@ScienceGeek

@robl - if you have highly active RRMS, then Mavenclad is your least risky option. Although all drugs come with risks, Mavenclad is less risky than Tysabri or Lemtrada. It may also be less effective though, so there's a lot to consider.

RobL

@RobL

@sciencegeek thanks for the advice. I think im going to go for it šŸ˜•

ScienceGeek

@ScienceGeek

@robl - I have less active RRMS and I have had the first year of Cladribine. I'm very happy to answer any questions you have. Just send me a private message. Good luck.

melissag

@melissag

@robl I can relate. Have been offered it as well and am leaning towards it but I have my hesitations as well!

RobL

@RobL

Hey @melissa-g yeah seems some of the wording on side effects is a little scary, but MS nurse advised yesterday that it was probably my best option. Let me know what you decide. As i say it looks like im going for it!