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Tysabri experiences

I had my first tysabri infusion on monday and since then I have felt awful.  Really tired, getting up the stairs is an effort, my thought processes are slowed because of the tiredness.  Does this improve?  I hung my hat on this being some sort of miracle (the anecodotal evidence I read suggested as much) and now I'm really disappointed. 

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Hi,

Sorry to hear you're having a tough time. 
I did feel pretty rough after my first infusion, very similar to how you describe. I was very lethargic for the first 4 actually, then on my 5th I had a bad reaction - nauseous, uncontrollable shivers & a cracking headache. I had a similar but less severe reaction to number 6 & ever since then I've had the infusion over two hours rather than one & have been much better ever since. I've just had my 19th infusion.

Speak to your MS nurse and let her know how it has affected you, they might adjust the time of your infusions. They need to know anyway as they do need to monitor any kind of reactions, so please do let them know.

Don't bank on miracles with this drug. Some peple do have incredible improvements. I've had improvement to cognitive function, energy, reduced fatigue levels but best of all no relapses & no progression whereas before I was going downhill very fast. But I haven't had massive improvements with mobility like some people have.

Don't despair, I hope you feel better very soon. 

Hello there.... dont despair, you will feel ok in a day or too.  I have been on Tysabri 2 1/2 years now.  Yes, all very daunting to start off with but you will feel the benefits in a few months, 6 months from now you will be an experienced Tysabri infusion person and will be telling others to 'go for it'.

Dont despair you will be OK.

Sam

Hi I have had 9 infusions of Tysabri and I have had 2 really big relapses that left me unable to function and strange cognitive episodes that are indescribable. My feet and ankles are also considerably swollen. I have decided to come off it because I appear to have got worse.

I know it does work for many people and I thought I would get my life back again but it’s not working for me. I am soooo disappointed.

Hope it works for you.

Thanks everyone.  I'm still struggling with the massive tiredness, but as usual with the family somehow you have some sort of reserves to help you through.  I managed a supermarket shop yesterday, but came home and sat down after lunch and missed all of the afternoon film.  Not quite so foggy headed today, but getting new tingling sensations on my right arm (previously only had then in left arm).  I'm going to make the most of having almost a week with only the baby to try and catch up (everything I brought to eat requires minimal effort on my part and the house stays much cleaner and tidier without the big ones).  Unfortunately my OH has man flu and if he keeps this up with the coughing etc (I wish he would blow his nose) and the phrase "poor old dad" I might suffocate him in the night!!!happy2

I was like that to for anything up to 48hrs but now instead of me being tired after an infusion I have loads of energy and it almost lasts the 4 weeks I just know people who've pinned all there hopes on Tysabri like its going be a miraicle crue but its not a cure you have to give it time friends see my now walking going to the gym and a well looking healthy strong fella I was in a wheelchair couldn't even care for myself and they just think yes I'll have Tysabri go and get an infusion and they'll be like me I try to tell them please don't think it will work like that it took time and a lot of hard work for me to get where I am today.

I would have been happy if it could just slow the relapses and maybe slow the progression well it did more then I could ever have dreamt of I was relapsing ever 4 or 5 weeks but I started Tysabri in August 2008 and touch wood I haven't relapsed in all that time for me that was a miracle, It did take I'd say about 2 years for the fatigue to leave me and about 7 months before I could leave the wheelchair behind there my be some who get results quicker and some it takes longer everyone is different just don't give in or think its not working yet give it at least a year till you get your first MRI and you'll see the good it can be doing behind that you don't see.

Mark x

The problem for me is that I needed to feel ok to get back to work.  I'm in the process of disciplinary proceedings due to capability issues because i haven't worked for what feels like forever.  9 months mat leave plus another 6 months on top.  I didn't want to take ill health retirement as I feel as if I still have something to give.  But I don't have the energy to do everything.  I'm worried that outwardly I look ok but I struggle to do even day to day stuff without many rest breaks.  This morning getting in the bath and getting dressed took everything.  I still manage to walk a reasonable distance (but always with the pram), but then I have to stop and everything will have been taken out of me.  My disability score is good. I don't want to be dismissed on capability grounds as I know if that happens it will be virtually impossible to get a job doing what I do (the health service had been very supportive of me while I didn't take loads of time off sick, giving me term time only contracts etc to ensure I had regular periods off work, the minute I start to take loads of time off they stab me in the back).  I'm not going to give it up as yet, its my last ditch attempt, I was just misled by stuff I had read and even things my consultant had told me "tell them to hold their horses you are much more likely to be able to work once this starts" and of course passed this on to HR.

My fiance tells me that when we get our lives back on track (sell our house, he starts back into the army, move to an area where I don't have to drive the kids to school every day and I have neighbours, where I don't have to climb 2 flights of stairs everytime the baby cries in the night) then that will fix everything instantly.  Ever the optomist!!

I just think your expecting to much to soon I haven't been able to work since March 2007 form then till August 2008 (when I started Tysabri) I was in and out of a wheelchair more time in it lol

I look great now and you'd never know I have MS most off the time I'd love to go back to work but I just can't yet it takes time and putting pressure on yourself like that won't help give it 6 months to a year the way I looked at it anything that could slow the way my MS was going would be great I was relapsing every 4 or 5 weeks and was getting worse after everyone, but since I started Tysabri I've never had a relapse and I keep getting better after every infusion.

Mark x

Mark, thanks for the reply, I've come to the conclusion that I should take ill health retirement (after all its been recommended).  Just think that will ease some of the pressures and give me a little bit more head space to think about me.  After all I can return to work at a later date even if I give up nursing (which I really don't want to).  This morning I went to the hairdressers and library and returned home completely done in.  Would be ok if little one hadn't discovered the stairs.  I taught her to go up so there was less of a chance of me falling with her, unfortunately she can't get down yet and the stair gate is just a huge trip hazard for me.

Dilemma for me is work. I still work full time. Don't have much sick leave, really. I want to keep working but do need to change what I do. The physical stuff is a big struggle, you see. The mental stuff is not a problem. Yet... I would love to be medically retired and find something else closer to home and better suited to my condition. But being medically retired is not an option as I am still on the mortgage slave program. I do not work for any of the public services, have no pension, etc. I do get sympathy and some support from my employer though. That does mean a lot to me, it's not their fault I have MS.

As I have said elsewhere on another thread I am on Tysabri since September 2011. I don't feel any difference but have had no relapses. So that is good. The way I was before Tysabri has not changed. I am on sick leave at the moment due to a heavy cold (not Man Flu, honest). I guess this because Tysabri is an immuno-suppressant. I tried to fight it and go to work as normal. But it dawned on me that best thing is total rest and recuperation. I am a stubborn guy, you see. The cold/ flu has been with me for 10 days now and I am due my next infusion on the 17th April. Will they give it to me? Or will they give it a miss this time? I'll be phoning the ward beforehand to save a wasted journey.

I've had a sore throat since last saturday, 5 days after infusion, snotty nose for the last couple of days.  I can't do anything without tiring, today I did the supermarket run and ran out of steam somewhere around the frozen foods section, still had to get home and put it away as you can't not put food in the fridge/freezer until you feel ok to do it.  Its a trek even to get it in the house as I have to park in our allocated parking which is on the opposite side of a busy road.  Its hard enough getting the children in without getting run over.  Today my step daughter arrives for the weekend and my OH trying to do the best for her has invited his ex wife's mum and sister for lunch (they no longer see his wife because of various issues, so it will be the first time they have seen his daughter since christmas), but guess I'll be cooking, when all I really want to do is rest. Really wish we had more support nearby, not sure what I'm going to do with the baby while I have the next infusion (seems wasteful to pay nursery bill for every monday when I only want 1 in 4 and we are struggling as it is).  Oh well 2 weeks to find someone to take her!

I'd resisted for about 3 years but there comes a time when anything is worth a try! 

I’m going for it (pending blood test results) - watched loads of stuff on YouTube / read the tysabri diaries, and it’s been really positive for most people. Bit worried about fitting it in with full time work but otherwise no concerns about it. Can’t be worse.than rebif or copaxone were!

Good for you, I loved copaxone, but after a while it didn't love me.  Avonex lasted one dose after causing me to become so anxious I couldn't focus.  Now I'm just hoping things improve.  Don't worry about work, they want you to be in the best health so you can do your job to the best of your abilities.  I'm seriously thinking I might have to just turn up with the baby in the pushchair and hope that they can work around it!