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Tysabri blind trial

Hi there, I have just had my second infusion of tysabri or saline as I am on a double blind trial but to be honest have been worse since I started it !! I wanted to ask if anyone else had experienced this ? I do not want to say I’m definitely on tysabri but after the first one I was shattered, headaches and a lovely cold sore, second one two days ago and am just as tired but now my nose/sinus is really bothering me and if I move my head to quickly my head feels dizzy. Do you not feel better after tysabri or does it take a while if it is that I’m on.?Just I really don’t know If it is but wouldn’t like to think that I’m feeling like this for something rather than just being unlucky !! Any help much appreciated !! Xxx

I’ve been on Tysabri (‘Rolls Royce’ of MS drugs, according to my neuro) for about 18 months and have felt bad for four or five days after taking it for most of that time. So I would say there’s a bit higher than evens chance that you’re on the real thing. I’ve talked to 10 or 12 people who have been on the drug for years (one had been on it for 7 years) and some of them had seen big improvements in their condition, but it had taken years. How long is the trial? In the past few weeks I have stopped suffering from the urge incontinence that has plagued me for four years. I’m really hoping the improvement is a Tysabri effect (but I always have been a great optimist). One final thing, people can get bad rebound relapses if they stop Tysabri. I think the standard thing in trials is to give you the chance to stay on the active drug and you want to do that.

I’ve had six infusions of tysabri. I usually get a bit of a headache the day after hut it only lasts a day.

I’ve had 12 infusions and always feel extra tired for a couple of days afterwards and sometimes a bit dizzy but it all settles down within the week. Strangely enough a runny nose is listed as a possible side effect so I would think you probably are on the real thing. After 12 infusions you are given an MRI and I had my full scan done a few weeks ago and am now waiting for an appointment with my neuro to discuss the results, it will be interesting to see if the drug has any effect on a nasty brain lesion which was very active prior to starting the treatment. I hope you are on Tysabri Anon because it will give you the best chance of staying relapse free, fingers crossed for you. Sx

I am not sure I have anything worthwhile to contribute. My experience after 30 infusions is that I have never had any reaction to the drug and it took 6 months to slow down my relapse rate. I have been stable for 2 years. It has only been the last few months that I have felt fatigued in the few days before my next infusion.I know it is being tested for secondary progressive, and I really hope it works for you.

All the best

Peter

Thanks guys , I have secondary progressive so I am hoping it is as that’s our little bit of hope until they can get anything else to work. !! I am really hoping it is and if it is I’m hoping to feel better soon as I feel miserable at the moment !!! Margaret xx

I hope so too. It’s a long horrible road.

Good luck with it Margaret. x

I’ll be going for number 60 now in the 4th May I used to get really tired for almost 48 hrs after my infusion I would say drink plenty of water at least the day before your infusion that should stop the headaches. The drug its self for me as been amazing its got me out of a wheelchair and walking unaided and best of all I’ve relapse free since I started it in August 2008 my MRI’s have shown real improvements for the first 2 years and they been stable since.

Now I get my infusion and pop into the gym for a few hrs straight after the Tysabri gives me so much energy now I fill fitter and healthier even then before I’d MS :slight_smile:

I’d stick with it I have friends how felt worse when they started Tysabri and thought about giving up but glad they didn’t 1 it took about 2 years to feel the full affects of it and I know of another who was in a wheelchair and on Tysabri for around the 3 year mark before she was out of it and walking. I was out of a wheelchair and walking with a crutch in 3 months after 7 months I didn’t even need that unless I go for a walk round town or something or I’m out for a few hours or if I’m out for the day or away on holiday I’ll use me wheelchair Tysabri isn’t a cure but its the closet thing and the best thing out there for now

I would have been more than happy if it just eased my relapses and give me some chance of fighting this MSonster I was relapsing every 4 or 5 weeks but its done more then I could have ever dreamt off :slight_smile:

Mark :slight_smile:

Ive not had any relapses since i started tysabri but ive only felt very slight improvements so its encouraging to hear from people who have been on it longer and who have had real results. Hope it continues

Jamie

Sorry to hijack this thread, especially for something essentially disgusting but I wanted to share something I am excited about. After more than a year on Tysabri, today I did a poo that was a 3 on the Bristol Stool Scale. For those not up with this (you lucky things), if your poo scores a 1 or a 2 on the scale, you’re constipated. This is the first time in a year, or longer that I managed anything higher than a 2. I’m putting it down to the Tysabri, completely (I’ve been on 3 tablespoons of linseeds a day for ages to get from a 1 to a 2.

Ha yeah i had constipation before i started on tysabri. Im now pretty regular.

It’s shape rather than regularity that defines constipation. Little pellets are a 1 on the Bristol Stool Scale. Round balls are a 2. If your stools look like this, you are constipated even if you’re going once a day.

No theyre quite the opposite to pellets. In any case its good that things are improving for you.