Oh Hobs if only we could all be that strong. Firstly Rachael is not well enough just now to go to the gym, she was several weeks ago but due to a bad reaction to her Rebif she is in another relapse, the 5th in about 6 months. She has just gone through her 3rd round of steroids in 5 months. Secondly her step dad is usually a very strong man but due to circumstances beyond his control at work he was feeling very down and anxious about his team and about losing his job. Like any illness he does not choose to feel this way or want to feel this way, he cannot help it, Rachael’s diagnosis on top of this is too much for him to cope with. Thirdly my other daughter is struggling with personal issues that would just normally make her upset but with the worry of her sister it is too much for her, she is still very young and is scared so I completely understand her wanting to run away and hope it all gets better, I don’t like it but I understand. Fourthly the adults in this house have read up on MS and learned a great deal in a short space of time and I have to say I have found nothing, absolutely nothing to be positive about regarding the progression of this disease. No one can tell me how bad or how little this will affect Rachael but what I have seen and read in Rachael’s notes and heard from the MS nurse regarding putting Rachael onTysabri is not something I can be positive about. She has very aggressive MS with significant lesions, she is going for another MRI in a few weeks to see what is happening in her brain as she is going from one relapse to another. When my daughter asks me what is happening to her, what her future holds, how will she manage, will she ever meet someone and marry and have children I am very positive about what her future life will be. That is to her face, inside I know it could be a very different story and that is why I liked these boards, it was somewhere to come and vent my frustrations, my fears without being judged. Without my family being judged. That is until now, you have judged my family very harshly without knowing all the facts. These boards cannot convey what is happening in everyone’s lives. People post when they are upset, scared, confused or in the minority of cases when something good is happening. It was a safe place to post. I will not have my family judged by someone who does not know them and sit back and say nothing. I assume you have no idea the level of fear when your child is ill and you are told that the next step in treatment could actualy kill them. Yes, I know it is 1 in 400 but for me those odds are too close for comfort. My family is a strong unit and will be again, we just needed some support to get us through this very difficult time.
Hi Hobs is being totally insensitive and obviously doesn’t understand what you are going through. We are here to be able to express how we feel without being judged. Take care
Have you considered a family therapy session? Sometimes knowing you’re all in the same boat and feel the same can really pull everyone together. At the same time you all get the time to let everything out. Sending much love and luck to you and your family xx
You should be positive about this. It may seem drastic but it works. There is a youngster on the UK Tysabri users facebook site who was diagnosed at 5 years old and is now on her 31st infusion. UK Tysabri users (Natalizumab) | Facebook
I have been on Tysabri for 5 years, dx 21 years ago but can trace first incident back 40 years, to me and many, many others this has proven to be our saviour - not only with the reduction in relapses [two in 5 years] but also in regaining some previously lost facilities.
When Rachael comes back from this awful spell she will be able to continue with her life. She shouldn’t give up on education, career, love, marriage and children if that is what she wants.
That is my personal comment but as a Moderator if you are upset with any post report it - although it probably helps you to vent when you answer back!
Best wishes
Liz
Hi Liz, I do feel a bit hopeful when I read up on Tysabri and what it does for people, have even spoken to someone at the Rehabilitation Centre when Rachael was in getting her last steroids but the little voice in the back of my head won’t quit with the 1 in 400 die, what’s to say she is not the 1 in 400. I also know that when she starts college next year that she will be meeting new folk and hopefully will kiss a few frogs before meeting her prince but again that little voice keeps nagging away saying what if she is not well enough to start college, what if she does meet someone and they can’t handle her illness. I try to quieten it but it keeps up a running commentary. I hope that as time goes on I will be able to shut it up and feel as hopeful as I make out to her I am. And a post upsetting me won’t make me report it unless they are being deliberately abusive and I don’t think Hobs was, I just think he was insensitive and harsh. Thanks for reply. Linda x
Hi Jennifer, have pm’d you. Linda x
Where are you getting the 1 in 400 from? It isn’t a number I’ve come across with Tysabri. The major issue with Tysabri is the possibility of PML but that is only if the person is positive for the JC virus - which can now be checked with an easy blood test.
Fortunately I am JC negative but I know of a lot of people who are JC+ who won’t give up the Tysabri to go back to where they were. They get MRIs every 3 months instead of the one a year for the negatives.
Liz
Linda, I would say if Rachael is approved to take Tysabri then it can only be a good thing for her. I know of a lady local to me who had relapse after relapse within a 9 month period and it got so bad that she couldn’t walk, talk, go to the toilet or eat properly. She had an emergency mri and her ms was very aggresive so the consultant said her only hope was going on Tysabri, this was 2 years ago and when you look at her now you really wouldn’t know there was anything wrong with her, she lives life to the full, is fully mobile, has 3 young children and sometimes she gets a little bit tired. Tysabri has been a wonder drug for her, she had the test beforehand which sees if you have the faulty gene (?) that increases the danger of Tysabri. Her test was negative so she had no qualms about starting the drug at all. It was a no brainer for her as she was having no quality of life at all beforehand. If this drug can give Rachael the boost she needs that would be great. The one thing I can’t understand is that she’s had so many courses of steroids in such a short period of time, I would have thought that was pretty unpleasant on a persons system. I was told by my nurse ( maybe incorrectly ) that a consultant usually doesn’t like to prescribe a high dose of steroids more than once a year. I do hope that things get better for Rachael and you all as a family.
Hi Linda, I too have been reading all your posts and my heart goes out to you and your daughters and husband. Life can be so hard at times but you sound a strong lady and I am sure you will get through this episode. I agree with you about our children, I have three that are all grown up , two of them with children of their own but I still worry about them. As they get older there problems seem to get bigger!! and I too have often wished they were all little again but then I would have to go through the ghastly teenage years again. Lol. I really hope things improve for Rachael and perhaps going on Tysibiri would benefit her, I can understand it must be a hard decision. My thoughts are with all your family, keep strong and try to keep smiling. Love Karen x
Hi Liz, I got this information from someone else on the boards who was posting about Tysabri and posted a link to a blog (MS Barts blog). Fudgey37, thank you for your post as this give me great hope. You are right I think about the amount of steroids but Rachael has just been getting relapse after relapse, not getting any time in between one before a new one starts so the neurologist probably had no option but try steroids to give her some relief. I don’t know how they know it is a new one, think it is something to do with either sensations or numbness in another part of her body which let’s them know it’s another relapse and not just the same one going on. Karen, thank you for your kind words. Would not wish the teenage years on my worst enemy, teenagers can be very hard to deal with. Thanks again guys, with hugs Linda x
Hi there, I agree absolutely with Liz’s posts regarding Tysabri - it’s made a huge difference to me (on it 4 years now) and I haven’t had a major relapse since I started it. Yes, there’s always a very, very tiny risk of PML developing and yes, I’m JC positive (ie riskier) but that’s never made me want to stop it. Nobody in the UK has died from Tysabri related PML (there’s one discredited death report in the UK) - they also monitor you very closely - I have 6-monthly MRIs and all the normal Tysabri blood tests and I can talk to an MS nurse and consultant at my monthly infusion if I want to. When I look at the PML risk levels I always look at the big number that AREN’T at risk (in your example the 399, but like Liz I know that this level is very worst case scenario) and it’s a ‘no-brainer’ to me - keep going and remember what it was like before!! On another point, can I ask how Rachael herself is dealing with her family falling down around her? I ask because I find myself thinking back nearly 30 years to the big tragedy of my life - one of my twin daughters dying during their birth. All I can remember about that time is my husband and I internally dealing with our own grief but having to look after my mother-in-law who was running around wailing and asking to see OUR doctor about medication for her as she was so distraught - as you can probably see, even now I still feel that she hijacked MY personal tragedy. It’s a point for all of you to be considering carefully maybe? Anyway, I’m sure you’ll all be OK - it’s a big shock to the system but things will get back onto an even keel - different maybe, but closer to normality. Take care Jackie X
Hi Jackie, I absolutely agree with you about someone hijacking a personal tragedy, I guess we have all been there or saw someone do this. Rachael just thinks her sister is working and being selfish by not coming around and knows that she is avoiding coming to the house to avoid debt collectors, she does not think it is to avoid her. She is not aware of my husband being off sick from work, she just thinks he is on holiday and is worried about his job. I would never allow anyone to make her feel worse or to jump on her illness bandwagon. I have broad shoulders and a ready smile for whenever Rachael is about, she rarely see’s me without a smile, joke or hug for her. I am still researching Tysabri and there are some sites I wish I had not stumbled across as they are freaking me out, think they are more medical sites rather than ordinary people sites. Am trying to stay away from those. I have about 4 weeks or so before Rachael’s next MRI to do some more research then talk to Rachael about where she wants to head with this, as she is 16 the hospital treat her like an adult and leave the decisions up to her but I would hate her to research it herself and come across some of the things I have so I keep trying to head her off at the pass and tell her to come to me if she has any questions and I will research it for her and let her know. Thanks for reply. Linda x
The main concern in your house at the present time is Rachael. Yet your elder daughter and your husband have pushed their issues/problems to the top of the ‘agenda.’ Your husband has to seperate the work concerns from the home concerns (having time off with his job under threat is not a good idea.) Your daughter should be supporting you and Rachael. It is almost as if Rachael is going to be blamed by your daughter for her financial problems and your husband will do likewise regarding his job. I have nothing but admiration for the way you are coping with what is a deeply worrying situation, a situation you can’t resolve.
Hi Linda I just want to reiterate how we’ll you are doing and how strong you are, not just for yourself but also your family. But being strong can have its drawbacks and I think it would be good for you to take off this mask, have a good scream, cry, shout, and then be able to put the strong mask back and continue. Yvette x
Hi Linda, This is now a very long thread and I have not read it all, so apologies if what I say has already been covered. Tysabri is also known as Natalizumab and there is a 48 slide presenation today on Barts blog, (type MS blog Giovannani into google and you will find it). The risk of PML is estimated at 1 in 2,500 for the first 2 years of treatment even if you are JC positive. The slide supports Giovannani’s view that with MS you should introduce 2nd line treatments asap to prevent long term damage (not surprising as it is his presentation!). It seems to be the treatment for severe RR MS, and from what you say Rachel falls into this category. I went straight onto Tysabri and after 3 years treatment my EDSS score (used to calculate how bad your MS effects you) has probably moved from 6 to 5 (a step in the right direction). I hope this is of use to you. Peter
Thanks Yvette, I agree with what you say about screaming and crying, frightened to start incase I can’t stop. Peter, think it must be a previous post of yours that came up in a google search of Tysabri that led me to bart’s blog before. Will go in and have another look, I just find it hard to look past the negative as Rachael is so unlucky to have this and what’s to stop her being in the unlucky percentage that get PML. The more I read positive stories the better I feel then I stumble across a negative and I am back at square one. You are right that it is a step in the right direction, do you fee any different and has your relapses decreased in frequency and severity, have you been left with any disabilities? I am sorry if this is too personal, please don’t feel you have to answer if it is too personal for you to post on here. Linda x
Linda, I suppose you have to ask yourself, how do you see this progressing without the intervention of Tysabri? It seems that Rachaels ms is particularly aggressive ( the mri results will confirm just how aggressive ) and if this is the case and you don’t go for Tysabri, can you stand watching Rachael deteriorating so rapidly and then regret not going for Tysabri sooner? I really do not wish to sound harsh and please don’t take offence. I don’t think there is a 100% guarantee that a Tysabri user will not go on to develop PML but the clinicians do their utmost to monitor the patient for any warning signs and the risks are extremely small. You’ll always find a horror story for everything in life but there are also so many good stories. Try not to read everything on the internet, it’ll do more harm than good and send you scatty. Has Rachaels neuro talked about Gilenya? I know that there are side effects with that ( again, you are closely monitored ) but I don’t think PML is involved or how does he/she feel about LDN? That has helped a lot of people who didn’t do so well on the DMD’s. You need to try to look past the negative for Rachaels sake and your own peace of mind. I know it’s difficult as she is so young and life is a b***h and it all seems so overwhelming and unfair but try to give her the best chance you can and if Tysabri is it then i say go for it.
Hi fudgey, I would be overwhelmed with guilt if I did not give Rachael the benefits of any drugs that could potentially help her. I am leaning towards Tysabri being something that could help her and hopefully stop disabilities. No one has mentioned any other treatment yet, maybe when we get to see the neurologist we can ask about the other things you mentioned. And life is a biatch. Linda x
Linda, No secrets here!. I was suffering relapse after relapse before I started Tysabri. I had one a month or so after I started the treatment and ended up in hospital in a local rehab unit, thanks to my MS nurse’s support. That was 3 years ago, fingers crossed I have not had any relapses since, and oddly not even had a cold. I could barely walk a step when I came out of hospital, but now I can walk about a mile and feel much better in myself. In truth, I am pretty much the same every day. It was an easy decision for me, as I was 50 at the time and so the risk/reward allowed me to “take a punt”. As a father of 3, I would not wish to have to go through what you are dealing with. It is certainly worth asking about Campath/Alemtuzamab which is one of the next generation of DMD’s. All I can really add is that if you are going down this route, it seems to be the earlier the better. My best to you both. Peter