Hi everyone, MRI results are in and showing more lesions which are active at the moment. She is having a relapse and so has to start steroids again on Monday and the MS nurse says it looks like Tysabri is the way forward and we can talk about it on Monday with neuro. L x
Sorry the MRI shows more lesions but at least you know now exactly what is going on.
I really hope the Tysabri slows it all down for her. Also hope the steroids kick in quickly to help her feel a bit better.
Take care of yourselves and let us know how it goes on Monday. I will be thinking of you and yours.
Is not good news about the MRI hun but Shazzie is right in that at least now you know.
I know you have probably done all the homework you need on Tysabri but maybe you should write it all down and have a list of questions for the neuro on monday.
Let us know how you get on. Hugs for you both.
Sorry, I know the MRI result is not good but at least it isn’t a tumour which was one of your fears. You can, at least, put that one to rest now hun.
Tysabri is scary I know, but it isn’t good for Rachael to have steroids so frequently either so if the Tysabri can put a stop to the relapses it could be much better for her long term health.
I hope that when you speak to the neuro you can have a full and frank discussion and he can explain things in a way to help you both decide what is the best course of action for Rachael’s future. The aim is to stop the relapses so the disease doesn’t progress rapidly and she can avoid major disability for a long time to come (or hopefully for the rest of her life). Don’t forget they are always working on new drugs too, so there may be an option for her to switch from Tysabri in a few years.
Hi guys, thanks for replies. Tracey - am glad there was nothing more sinister in her MRI just sorry it is more lesions. She alo has a app to speak to counsellor in a week on Monday so hopefully get some stuff off her chest. After speaking to MS nurse about Tysabri it is definately looking at the best bet as she is relapsing so often and so far so lucky has not been left with anything too permanent but all that can change in a heart beat. They also check her bloods every month to see if the JC virus in present and if it is they flush her system of the Tysabri which allows the body to fight the virus in the usual fashion. Lx
It wouldn’t hurt for you to speak to the counsellor too, Linda, separately if possible. I know you are doing your best to be strong but you are all in this together and it has been a bumpy road. Would be nice for you to offload too with someone who isn’t emotionally involved. I know you can do that here and that’s what we are all here for but sometimes talking face to face with someone really helps xx
Linda, I was interested that the MS nurse said they would be monitoring for the JC virus each month. I have been on Tysabri for 3 years and have regular blood tests. I was surprised to get a call from my MS nurse earlier this year to say that they wanted to test for the JC virus. I thought they had been doing this regularly, but not so. A new blood test was done and a courier collected it and the blood was sent off to Denmark for analysis as there wasn’t a UK lab that could do the test. It came back JC +. It might be worth checking this out with the nurse as I would not want you and your daughter to be under the mistaken impression that this was being done. Peter.
Hi Peter, he took bloods yesterday and explained they would be being sent off to Denmark to be checked for the JC virus, in the hospital they checked for normal virus markers which there was none. Now I am doubting whether I heard him say that they would check every month for the JC virus, sure I did but now not 100%. Will check that out on Monday while at neuro. Thanks for pointing that out as the thought they were checking her every month was giving me some mental relief that they would find it really quickly. L x
Sending some positive thoughts over the Tysabri and hope the steroids kick in nice and quickly
Agree with Tracey, please look after yourself
Hi I know that more lesions isn’t what you wanted but in some ways as they are there is an explanation for how things have been going for Rachael. Let’s hope if you decide to go down the tysabri route this makes a real difference for you all. Hope the session with counsellor helps her too and more are available if she needs them. Take care and sending you hugs Barney
Just back from neuro appointment, he decided that as she was just getting over the shingles it was better than she did not have more steroids as it may inflame the shingles virus again. He is applying for Tysabri and hopes to get her started on it soon, he did say she can come of the Rebif right away. He also showed us the MRI scan which was lit up like a Christmas tree, when I asked how many new lesions she had he said it did not matter how many it was more that she had new active lesions since the last MRI in May, is this true, does the amount of lesions not matter or was he fobbing us off? Peter, I asked about checking for JC virus and he told me it was every 6 months not monthly that they checked it so it was just as well you noticed my assumption. Her results are not in yet, hope to get them in the next couple of days to find out if she is JC+ or JC-. Fingers crossed for JC-. L x