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Fingolomod

I want to share with you my experience of Fingolimod

i went into Hospital 6 weeks ago for the assessment and first dose. This was straight forward causing no problems. Two days in and I started to get very anxious. I was beginning to get feelings helplessness. I began to do odd things. I couldn’t handle confrontation nod I drove off 100 miles just to get away. I was crying a lot… I rang my GP who said it was more likely to be the duloxatine I was on and not Fingolimod. So I came off that and was able to go straight onto Sertraline for the depression I have always had. I started to go into a dark place. It was very very scary. I had a phone consultation with my MS Nurse two weeks in who was seeing my Neuro that afternoon and would voice my concerns. She rang back in the afternoon to say that a few other ladies had experienced similar symptoms. I was advised to persevere as it was early days. I did but it just kept getting worse. My husband couldn’t cope with the moods and started a friendship with a colleague. Texting all the time and my paranoia got worse and worse. Then after one particularly bad day he told me he didn’t love me anymore. He couldn’t cope with the MS and the change in me. That morning I took an Overdose. Ended up in A&E. Seen by the Pyc team who put Crisis in place for me. Came home and have been trying to pick up the pieces. The outcome of all this was when the paperwork filtered through to my Neurologist he rang me and told me to come off it straight away as he has 4 other ladies reacting the same. 5 days later I am a completely different person. Getting back to some sort of normality. Husband and I started relate last night so that could be positive. My warning to you guys, if your on it and start to feel anxious, don’t ignore it. A positive side was that I got my sexual feelings back big time. I have had to way up sexuality over madness. Mmmmm not sure I made the right choice he he x

hi caz

that sounds like a horrible experience.

suppose they are finding their way through how fingolimod reacts to anti-depressants.

glad you’re feeling better.

stay well

carole x

Hi Caz

It sounds like you’ve had a hell of a time. It must have been so frightening to have a drug interact with your brain in that way. I’m so glad you managed to get out of the black pit of depression, terrible to have to try to OD before you could get off the drug.

I sincerely hope you and your husband manage to come through this and emerge the other side still together.

I also hope your post helps other people on Fingolimod who experience anything similar. Putting your personal experience on the forum has hopefully been a useful and cathartic thing for you.

Sue

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