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Tysabri?

Hi all,

have finally made an effort to get on the new forum! Got my password and set up now (I think...) - haven't been on since the changes.

Just had my 6 month check up.  Neuro thinks I am having one mild relapse a year while taking beta-feron. I thought this was good news, but she asked me if I wanted to start taking Tysabri - I'm very confused.

Then she seemed to back-track and said I would have to have had two relapses that required treatment with steroids to qualify. Which I haven't. Why would I be offered Tysabri if I didn't need it yet? I don't know what to make of what she said  - she seemed to be offering it and not offering it.  I thought it was normal to have relapses on betaferon - I mean we have no idea if it works anyway!!! I might be better off taking nothing at all - who knows! All the questions that I had when I first considered taking Avonex have resurfaced leaving me feeling a  bit down. Well - I have got MS. Par for the course you might say...Tysabri though - blimey - so weird to be in a position where I  need to contemplate taking a drug with potentially fatal side-effects.  Thing is, I feel really well at the moment, so this has come as a bit of a shock...

Wondered if others could let me know the point at which they changed from beta-feron to Tysabri? I'm at a loss here!  I need to clarify this with my neurologist, but worrying about it in the meantime!

Thanks very much,

Fizz

Hi Fizz,

I was on Avonex for almost a year before I started Tysabri but Avonex wasn't working for me so thats why I started Tysabri I was having a relapse every 4 or 5 weeks so I was really happy to get the chance to start Tysabri I started in August 2008 and so far I've never had a relapse.

Anyone that knew me before I started Tysabri think its amazing the way its worked for me,

I've no worries about the side affects I'd would be more worried about the route my MS was taking.

I have a couple of friends who went straight on Tysabri not long after they where diagnosed I don't know why they where offered it.

Mark x

I got put on tysabri straight from the beginning, i hadnt been on any other treatment, i was diagnosed and told this would be the best drug for me, seemingly i had been having a mega relapse, i couldnt walk, was physically disabled, but the reaction to tysabri has been incredible, i can walk 'normally' again, to look at me you wouldnt think there was much wrong, its given me a total new lease of life, the best thing i could have taken, sure it does come with scary side effects but its all bout weighing the negatives/positives.

Tysabri , from all accounts, seems to do an excellent job. It’s efficacy far outstrips that of the other DMDs- however you have been left with some very confusing mixed messages. Have you been offered Tysabri or not? It is usually prescribed for those suffering a more aggressive " rapidly evolving" form of MS. You don’t sound as though you fit this category. Another dialogue with your Neuro is called for to clarify the matter- it sounds to me as though you need to explore the reasons you were offered this - if in fact you were offered it!! Sorry if this sounds muddled but Good Luck with it whatever the outcome. Roger

Having re-read your post, I think your Neuro was alerting you to the " big guns" which are in reserve if your ms changes and gets worse. You still need to clarify this though. R

I was on Avonex for 10 years and having the occasional mild relapse for most of that time but then for the last couple of years settled into a pattern of rolling back-to-back relapses from about October to February and they were nasty ones, leaving significant permanent damage.  The second year this happened, Tysabri was mentioned, and I had an MRI to see whether there were active lesions, but we had left it until my winter relapse routine had quietened down, so there was nothing lighting up, so we left it.  This year the same routine happened and this time the MRI showed the active lesions and the decision to go on Tysabri, while I thought it through carefully and all that, was actually quite an easy one.

If i were you, I would be puzzled as well.  When I waw relapsing mildly occasionally on Avonex, I thought I was doing OK, and so did the neurologist.  I completely share your views that it is by no means obvious that the drug is not working (and how do we really know anyway?) etc.

The thing that struck me when I read your post was that it takes a real dimwit of a neurologist to subtly undermine the efficacy of a perfectly good drug by lodging in the patient's mind the worry that it might not be the right one.  These people are all highly intelligent, but that doesn't mean they have much sense, does it?  Maybe I'm being totally unfair?

This is complete guess, but I would put money on there being quite a lot of variation in prescribing practice for Tysabri.  And why not?  Neurologists are the experts, and why should they not bring to bear their personal judgement and experience.  If it was just a matter of tick-box prescribing, you or I could do it, and save the nHs a lot of money.  So I expect that some are inclined to be more interventionist and others more inclined to wait and see.  I must say, yours sounds like she's the worst of both those worlds!

I do think it might be worth your having another chat with her to get this straightened out in your head.  It is important for us all to feel that we're doing the right thing, drug-wise. 

Alison

x

Thanks very much for your reply. I’m really pleased to hear that Tysabri is working for you so well. I do understand that for some it is a great choice and you have obviously made the right decision. I have been left confused that I am taking the right drug for me, as to date my MS is mild, and I am still coming to terms with the fact I have MS. Thanks again - it’s good to hear positive things about Tysabri.

Hi Alison

Thanks for you reply - I think you hit the nail on the head when you say that ‘common sense’ was lacking in my neurologist’s approach as she started thinking out loud about the pros and cons of beta-feron versus Tysabri in relation to what might be best for me at the moment (she is actually a really nice lady). Is this about bedside manner? I do need to talk to her to clarify this - you are absolutely right that we all need to feel that we are doing the best thing we possibly can drug-wise! If only for any placebo effect that might be taking place! I’m please to hear that you decision to take Tysabri was an easy one when you had considered everything - thanks for sharing that.

Fizz x

Thanks for your reply Roger - yes, maybe she was. I am going to contact her this week and get some clarification on this. I don’t seem to fit into the rapidly evolving MS category - and she even said that I didn’t - and then gave me a hand-out about Tysabri. Yes, maybe she was preparing me incase my MS does get worse. Perhaps I am finding it difficult to accept that it is perfectly possible that it will get worse - but equally, I have had mild symptoms for 7 years, and there is evidence to suggest that if symptoms are mild for many years, that it may not get worse. Who knows - anyway, what I want to establish is if there is any evidence that taking Tysabri now will protect me in the future - I’m not sure there is. This is not an exact science by any means!

Thanks for your reply Roger - yes, maybe she was. I am going to contact her this week and get some clarification on this. I don’t seem to fit into the rapidly evolving MS category - and she even said that I didn’t - and then gave me a hand-out about Tysabri. Yes, maybe she was preparing me incase my MS does get worse. Perhaps I am finding it difficult to accept that it is perfectly possible that it will get worse - but equally, I have had mild symptoms for 7 years, and there is evidence to suggest that if symptoms are mild for many years, that it may not get worse. Who knows - anyway, what I want to establish is if there is any evidence that taking Tysabri now will protect me in the future - I’m not sure there is. This is not an exact science by any means!

Thanks for replying Mark - it’s really good to hear that Tysabri has worked so well for you and that you have been relapse free since 2008 - that’s great news. It sounds as though your MS was very active before you started - do you mind me asking if the relapses were mild or quite serious? I wondered if whether having a mild relapse (ie not requiring steroid treatment) or ones that do, would have any bearing on whether Tysabri would be offered or not.

Hi Fizz,

My MS was classed as agresive relapse remitting.

Almost all of my relapses where quite serious and required steroids at my worst just before I started Tysabri I couldn't walk I was in a wheelchair my bladder bowels speech breathing and fatigue was a nightmare I only had the use of my left arm I needed help to get washed and dressed and someone to cook for me I ordered and electric wheelchair cause I couldn't use a manual one and because of all those steroids and not being mobile my weight ballooned to almost 23 stone.

But thank God I never needed to use the electric wheelchair and sent it back I started Tysabri and got the use of my right arm back again within a month or 2 then I could walk again :) that took about 7 months in time everything came back again I still have to use a catheter and if I'm walking about round the shops I use a crutch but most of the time you'd never guess there was anything wrong with me as I got more mobile I lost weight 10 stone I did put on about a stone and a half again but I go to the gym now a few times a week if I get the chance I've been toning up and building muscle just getting my strenght back I just weight a bit heavier because of that but I feel healthier and fitter and have more energy then ever If I didn't go to the gym I find the fatigue creeping up on me again.

I got all my MRI reports from when I was diagnosed and they always showed my MS was getting worse and getting more lesions before I started Tysabri but the ones I've had done since starting Tysabri have shown my MS to be stable and everyone has shown improvements there less lesions then there was before I started Tysabri.

 

Mark x