Hi Anonymous. I came off plegridy after the 2nd injection. I went through an awful 4 -6 weeks and went into an depression. It wasn’t explained to me that plegridy can cause depression. Thankfully now I am in a better place. I started Tecfidera 5 weeks ago and so far so good. Changed consultants also & am much more confidant now. I don’t think about it too much anymore and take 1 day at a time. You can PM me if you wish.
Anonymous and Dubgirl.
I don’t usually pop in here now. I use the Everyday Forum. I just saw yje recent post from Dubgirl and thought I’d say “hello”. I too have come off Plegridy.
I began Plegridy July last year. I chose it for what I thought would be the ease of administering the drug and the slight side effects. I had a second relapse in mid September and had a week in hospital on iv steroids. That relapse has left a marked difference in my walking, sad to say. The flu like symptoms were mild, a couple of Paracetamol sorted them. However, apart from the spectacular red/black injection site reactions that remain for a month, for me the deal breaker was the low moods/depression. Bang on cue the day after injection, I would not want to get out of bed. When I eventually did resurect, I would spend the day weeping for no reason at all. I was very angry too. This would last 2/3 days and then I’d be back to normal. My recent mri done for comparison, showed no changes, so Plegridy was working. However, for me, those side effects were just too much, and they were avoidable with alternatives.
Just started my Tecfidera low dose yesterday and apart from the Beetroot Bonce(!), I’m doing okay so far. I’m very confident with it and don’t miss the flu like aches/pains either.
Hi,
New to the forum but diagnosed with RR, after many years of different symptoms, in 2008. Started with Copaxone, which didn’t agree with me from the beginning so put onto Extavia. Had been ok with Extavia until they changed the style of the pen last year and I struggled with dexterity, resulting in lots of scarring on my body. Started Plegridy due to this, as it was only once a fortnight, giving my body a break from the marks left by the regular injections. I thought it was going ok but had a relapse 6 months into taking it (Had been 4 years since my last relapse). Given the usual steroids. However, since then I have notice my mood is much lower, I am experiencing heavy legs, bloating and more excessive fatigue. Of course one of the comments made to me to try and deal with my new experiences was “do you have to work full time”. Why should I not! I have now been told that I can have Tecfidera, this is after I was told I couldn’t a year ago as I have the JC virus. After reading lots of forums, including this one, I really want to go onto Tecfidera but I am scarred of the side effects, especially the brain disease. My concerns really come from the fact that I was denied this drug previously but now it is ok. Friends say it is probably because of cost but still find it strange that a consultant can change his mind one year on that it is now ok for me to have Tecfidera. Poppy, I would be interested in your experiences with it please.
I have been injecting plegreidy for a year and the side effects do not seem to be getting easier, side effects vary in their intensity, the day after the injection I am stiil reduced to a shuffle when walking and include a dark mood, lack of balance, headache, and generally strong MS symptoms( I have feinted twice since starting it). I was previously in injecting avonex, and changed to plegridy when offered as it was evey fortnight instead of weekly giving me a week without injecting.
Like avonex, every time that I am meant to inject, I think of the side effects and seriously consider discontinuing the treatment, and do not not, after all this time, since diagnoses, know what the consequences will be. I am still struggling with the life changes and I rack my brain trying to think of a solution, I am a male 52 years old and find the changes, after a busy and active life, very difficult to mentally adjust to.
Sooz71. I have no idea whether I’m jcv positive or negative. My bloods are checked every 3 months for liver function and falling lymphocyte levels. I’m very happy with that and confident that I’m being monitored carefully. You can still be prescribed Tec if you’re jcv positive, it just raises the risk of contracting pml. You’ll be monitored so carefully you’ll be taken off of Tec if your lymphocytes levels drop and remain low. Personally, I’d either arrange another appointment with Neuro and ask why you weren’t permitted Tec last year. If this isn’t possible in the near future, perhaps write to the Neuro, via the secretary, asking for an answer. I’m very happy to be on Tec and haven’t had any problems.
Douglaap. I eventually chose Tec because of being “educated” by responses on here! It’s got a much higher percentage of reducing relapses and slowing progression, plus it’s one tablet twice a day. What’s not to like? 
I’m female and 56 and my mobility is crap. 12 months after my initial diagnosis of rrms, I’ve now been told it’s actually ppms. This only confirmed what I’d already suspected. My deterioration was fast! I’m staying on Tec as an “insurance” until I see my Neuro in October. It’s purely psychological and I’m expecting to be taken off it then. If you’re unhappy with Plegridy ask to try it and see how it goes.
hi
tecfidera does carry a risk of PML but the ms nurses are aware of it and monitor us closely.
3 monthly appointments with the ms nurse where bloods are taken and questions asked.
it is brilliant
carole x
it is a long time since i have been on my computer - it has not been attractive with MS sight symptoms - I have stopped my Plegridy after injecting for 2 years as they only made me feel emotionally and physically worse. I have not been taking any DMD’s for a year the neurologist is now suggesting (after new MRI on brain and spine) that I take either Gilenya tablet, Lemtrada infusion or Ofatumumab infusion. After looking at all side effects and details of other experiences I think I am going to opt for lemtrada, but i could easily change my mind if someone advises me differently.