I’ve been really lucky for the past 22 years since diagnosis - occasional symptoms, but a more or less routine life. My consultant told me I had ‘benign’ MS, and I guess I’ve managed to look the other way for a long time… Since the autumn, though, not so good - had a week of steroids in Sept (and I can’t even remember why), and at Xmas, when my left arm stopped working, another week - the treatment really knocked my system around (kidneys didn’t like it, I’m also Type 1 diabetic so blood sugar went wild). My arm came back, but past few weeks I’ve not been able to walk properly, using a stick to get to the end of the garden path, not able to drive - or work (self employed musician). All a bit shit really!
At my last check up, the MS nurse seemed keen for me to go onto Tysabri - which I wouldn’t agree to without researching. I came back and did that, but was overtaken by this relapse, so haven’t seen her since (not able to drive up to the hospital which is 35 miles away). A letter now from the consultant also keen that I agree to Tysabri, although no scan yet to assess what’s happening up there - do any of you have advice? I feel pushed into this - and what happens next? I’ve read that after two years, this treatment will be pulled for risk of brain infection then what. Should mention that I have been on Avonex for several years, until now.
I’m feeling alone with all this. My husband’s a sweety but doesn’t want to face what’s happening, and I don’t want to worry my kids, one at uni and the other about to take Alevels. Would really appreciate your thoughts, please? Thanks! Amanda
I am very sorry that your MS has reared its ugly head in such a nasty way. When the things you love (like music) are also the things that earn your living, and MS cuts the ground from under you on both counts, that is just unbelievably tough. Every good wish for a good and quick recovery from all that.
Medication. I was on Avonex for years, but then my MS got aggressive too and now I’m on Tysabri. Things didn’t happen quite so fast for me (actually, i probably persevered for the Avonex for a bit too long, but there’s no point in worrying about that now) and Tysabri has calmed things down again for me, which is a great relief. It’s a big decision, always. Not entirely new territory for you - you have already been through it once, deciding to go on Avonex in the first place - but it is always unpleasant to have to look your MS in the face and think about your treatment options afresh when it becomes clear that things aren’t going so well.
It is no wonder that you feel as if control is being wrested from you, but I would suggest that the main culprit here is your MS rather than your medical advisors. They are trying to help you. Your MS is a mindless disease process and it wouldn’t care less even if it had something to care with. Because there is so little point in directing our frustration and anger and grief at MS, I sometimes think that we unconsciously redirect some of it to innocent bystanders - long-suffering loved ones, the unsuspecting person at the call centre who chosen the wrong day to take 45 minutes to pick up and, most of all, our medical advisors, because they can’t cure us, dammit, and why the Hell not?!!! I’m rambling, but I’m sure you know what I mean.
You have a lot on your plate at the moment. All I can suggest is, take it slowly, don’t let anyone rush you, and decide at your own pace what you want to do. I hope it all goes well.
I’ve been diagnosed relapsing/remitting for 7 years and like you was given the option of Avonex or Tysabri at first. I went with the Avonex because my neurologist is very thorough about explaining potential risks and the mere mention of ‘brain infection’ screamed bad choice to me, as a recently divorced single mother of a young child even a minimal chance of that happening was too much. Unfortunately Avonex didn’t reduce my relapses at all and last year it got so bad I gave in and went with the Tysabri. I spoke to a lot of other pople on the treatment and each one was either no longer relapsing or had their relapses significantly reduced so for the majority of MS sufferers it looks like a much better choice than Avonex. Unfortunately it didn’t work for me and after a miserable christmas where I was left in a wheelchair and had to have a stairlift installed I got desperate enough to try another new treatment, Campath. Third time lucky hopefully
I guess its just a matter of deciding if your at a point in your illness where you can say that your current treatment is not working well enough to enjoy the quality of your life and that of those around you, for me I could see that it was taking too great a toll on my ability to care for my daughter the way she deserved and the side effects of all these new treatments can’t be worse than what we’ve already been through. the incidence of brain infection is pretty low but they test your blood regularly to make sure your not at risk both before and after treatment has started
Just remember your not alone in this, there are some great places to go to speak to people that are going through the same s**t you should be able to get a list of places from the MS Society or your MS nurse. Most of these places can arrange for a volunter yo drive you as well. I have been where you are, trying to cope alone, and I found a place called The Haven which practically saved my life.
I was in a fairly similar situation a few years ago. It turned out that I wasn’t eligible for Tysabri because my MRI scan showed no enhancing lesions, but I’d already decided I wasn’t going to go on it unless I had loads of new lesions, which I didn’t. The reason I wimped out (in advance!) was PML, the brain infection. However, they didn’t have the JC virus blood test then and I think I would have chosen differently if I had been eligible and my blood test had been negative.
The two year thing isn’t so cut and dried any more. A lot of hospitals have you sign a waiver so you accept the risks of continuing beyond that, but if you are JC virus negative, there is negligible risk of PML regardless of how long you’ve been on it. If you are JC virus positive, I think they switch you to Gilenya, but different places may do different things.
So I guess I’m saying why not get the blood test and take it from there?
Hi, I am like Karen and not eligible for Tysabri but I can sympathise with your dilema. Because I can’t take any of the standard 4 DMDs due to allergies and I am not eligible for Tysabri I have been left with no choce but the newest experimental drugs. I was on an experimental form of chemo for one year’s teatment but can no longer have it as it was pulled from the market for safety reasons and I am now on a new oral drug that is not available yet in the UK, called Aubagio.
It is scary because the long term risks aren’t entirely known and I do feel a bit like a guinea pig but the way I look at it is that the way my MS was going I was heading for complete dependence on carers and severe disability rapidly and like you I am a single mum and need to do the best I can for my daughter.
So I decided the risky unknown of taking new drugs was better than the definite disaster of leaving the MS untreated to gallop on mercilessly. Do talk things over with your MS Nurse and don’t be rushed into it; it is a big decision but getting the MS under control is worth a calculated risk in my opinion.
I have been on Tysabri for 3.5 years and since starting it I have had no relapses. Prior to starting it I was on both Betaferon and Rebif respectively. Whilst they slowed down the severity, they didn’t slow down the rate of relapse. I was averaging 3 relapses a year which is why I was moved onto Tysabri.
Since starting Tysabri I have completed an Access to Health Studies course and I applied to the local to do a p/t OT degree course. I didn’t get on it as they said that my qualifications could be better and that I didn’t have the relevant work experience. I am now studying Sociology and Psychology AS/A levels and I am hoping to start doing voluntary work at a local hospital hjome for retired veterans working with their OT dept by running a group for residents there as well as some other roles within the organisation, with a view to getting n the degree course. I have also started playing wheelchair basketball as I am one of the 10% of MS’ers who don’t get the chronic Lassitude fatigue. None of this would have been possible without me being on Tysabri.
The one major side effect to Tysabri, as has been mentioned, is PML. This is a very rare condition caused by the JC virus and there is a test available to see whether you have it or not. I dont have it and as result my chance of contracting PML is 10000:1. IF you are JCV positive and have been on it for over 2 years it falls to 1 in 217 or 0.46%. IF I was positive this wouldn’t stop me from taking it as the benefits FAR outweigh the risks. Tysabri has given me a quality of life that I thought I would never be able to have and I am so grateful that I was eligible for it as I wouldn’t be doing what I am doing now. IF you can get your head around the slight PML risk then this treatment is something that I would recommend to anyone.
Hi B and Andy - thanks so much for your replies - I think I’m about there on making the decision, just waiting now to speak to dhe consultant. Their people skills are rubbish, lol - and I’ve worked in the NHS, appreciate the pressures they’re under - what’s made the difference is speaking to people who KNOW what I and they are talking about!
I’ll keep you posted on outcomes, in case it’s useful to someone else needing this info - but again, thanks so much, all who’ve replied, it makes such a difference
Hi peeps. and I hope you’re all doing as well as possible? I dropped off the radar because of a really horrible rebound relapse when I came off Tysabri - limited my walking and frightened me. I decided that I’d rather be on Tysabri and available to my family than in the relapse, and thank god, after a five month break, things are steadier again. When they’d tested my titre level, I was a low positive, which is what triggered the decision - fear of JCV - but since then I’ve had another test which came back negative (apparently it’s rare but does happen!).
So now I’ve not worked for over a year, and am having to regroup as someone with RRMS, who needs to figure out what the rest of my life will be. I guess it’s almost exciting, except that we’re so broke financially - and even that doesn’t matter so much in the grand scheme etc etc. Your help in supporting me while I figured out what to do was fantastic, thank you so much.
And on a mundane level - does anyone know if Tysabri is yet being infused at patients’ homes? I read somewhere it would be an option - the 60 mile trip every month knackers me!
I am JC positive and worry about PML but I chose Tysabri and at the moment I’m feeling a little better.
I did ask about the potential of having home infusions. I was told it may be something that may be available in the future but at the moment I would have to go to hospital. I’m fortunate that my hospital in Kent is only half a mile away from my house.
Who knows, with all the medical enhancements, we may be able to have our infusions at home soon.
Crumbs - I am sorry to hear that you have been having such a torrid time.
I haven’t heard anything about home infusions. On the face of it, it doesn’t sound terribly practical. Having a nurse sitting on every patient’s sofa for two hours minimum (1 hour infusion, 1 hour obs) before travelling on to the next patient? He/she would do 3 a day max unless the patients were all next door neighbours! Maybe they could leave the patient to do his or her post-infusion obs? No, that wouldn’t work - if it could be assumed that the patient would be well enough to do her own post-infusion monitoring rather than on the floor in fits then what would be the point of doing them in the first place? Etc.
I don’t know. Personally I would rather go to people who cannulate all day long, even though the trip knocks me out for the day too and my journey is only half yours!
then what. Should mention that I have been on Avonex for several years, until now.