Hi guys, Rachael had the MS nurse today to check her bloods as she started Rebif a couple of months ago. I took along a list of symptoms and side effects she has been suffering with for the past couple of months/weeks. The list contained 23 different things. She read through it and asked some questions then decided she needed to speak to neurologist. After speaking to neurologist it has been decided that Rachael is having another relapse and then is 6 weeks she can have an MRI to see what is going on. They took bloods to check for JVC as they are now thinking she may be better of on Tysabri. She told me that the worse case scenrio is that if Rachael shows signs of JVC and they decide to go with Tysabri anyway as her MS is extremely active there is a chance that she could get a brain infection with at worst leads to death and at best will leave her disabled. WTF! I burst out crying and can’t stop and am now panicking. Rachael had a wee cry and then decided she would not discuss it or worry about it till she has her MRI and then we will talk about her options. I don’t know what to do, I have one thing running constantly through my brain, “where do we go if Tysabri does not work”? I can’t let myself think of the worst but it’s there at the back trying to break through and I know I will be done if I let it in my head. I can feel my heart beating and feel I can’t catch my breath. What do I do? Linda x
Oh meant to say she is starting steroids on Monday.
Linda,
This is worst case scenario - absolutely worst case. Remember when you started on here you were reading everything you could get your hands on and were scaring yourself into ill health. Hun, you are doing it again.
The thing is that they are doing something about it. I can’t tell you not to worry because of course you are worried and scared as any mother would. But Linda, if you become ill then how will Rachael cope. In this instance I think you have to follow Rachaels lead. You can’t do anything until you get the results.
My heart goes out to you hun - you and Rachael have been through so much and it sems so unfair that its still ongoing. But you both are strong and you will cope.
Let us know how you both get on - take care of yourself and Rachael. God bless. Lots of hugs
Kelly xxx
Hi Linda, now listen…if they do find Rachel is susceptible to the JCV thing, then refuse the tysabri. That`s what I would do. Isf she isnt, the tysabri could be just what she needs to get her onto a more even keel, eh?
luv Pollx
Don’t panic.
Tysabri is a very effective drug for damping down highly active and aggressive RRMS. After a torrid time, I started on Tysabri over two years ago and so far it has been doing a good job - touch wood. Lots of us on these boards are on it.
Most people start Tysabri only when they have tried one of the first line DMDs (like Rebif) and it has not done the job. Some people go on Tysabri straight away. It tends to work better than the first line DMDs, but it is also more risky, as you have found out. That is why it is only used when the first line DMDs have not kept a person out of MS trouble, or if the person’s MS is clearly so active that it makes sense to miss the first line DMDs out altogether
The thought of PML gives everyone the heebie-jeebies - of course it does. If your daughter has not been exposed to the JC virus, her chances of getting PML would be very low indeed. If she does test positive for exposure to the virus, and is therefore theoretically at a somewhat higher risk, they will explain all that to you carefully so that you can decide how to proceed and what alternatives are available.
There are people on Tysabri who are JC+ and who take the drug anyway because it has made such a difference to their quality of life that they would not be without it. Other people make different decision. There are no right and wrong answers. I started on Ty before virus testing was available. Quite honestly, I didn’t care - I would have tried anything. BTW I was JC negative when last tested, but that was ages ago and the tests are getting more sensitive all the time so who knows? Life is full of risks, and we cannot eliminate that. At least a person has the option to choose whether to accept if offered Tysabri with the small but serious risk that it carries for vulnerable groups. Highly active MS offers no such option, and its risks are clear and present - or that was how I chose to think about it.
I am so sorry that you have yet more shocks and difficulties to face together. It must be heartbreaking for you. Hang on in there - there are good and effective drugs available to help keep MS - even very lively MS - in check, and more on the way all the time. With luck, things will come along to help your daughter in the years to come that we cannot even imagine yet.
I wish you both well.
Alison
Hi guys, thanks for replies. Rachael is having too many side effects with Rebif and relapses so that is why they are thinking the next step is Tysabri. If she has the JCV or develops it while taking Tysabri then where do we go then? What else is left to try? What happens to her then? MS with no drugs to try and stop it’s relapses. I am so scared. Linda x
Hi Linda, just to let you know a bit about Tysabri - its reported to be one of the best treatments to slow progression of MS. The warnings about PML (the brain infection) are relating to the JC virus. It only becomes a risk if the test for the JC virus is positive and the risk is very small indeed but they have to tell you about it before any treatment commences. Im confident that others will be posting to tell their story about being JC+ and being on Tysabri for many years, I have spoken to people in this situation and they have a very positive attitude about the treatment and say it is very good. I started on Tysabri four months ago and tested negative for the JC virus, the treatment seems to be working well and have not had any relapses since. I know its a huge worry for you as it was for me when i found about the treatment but it will sink in and become easier. As im JC - i have less to worry about and I will certainly keep my fingers crossed that Rachael is negative too to ease that worry. Even if she is positive the risk is miniscule and worth still going with the Tysabri option in my opinion. Stay positive for Rachael and yourself, your doing the right thing by asking questions and hope you will come to terms with it all soon, im sure you will. Mick x
Hi Linda
My heart is going out to you (I really don’t know too much about RRMS and DMDs etc.) I just wanted to let you know that you have our support as always and I hope Rachel is being looked after really well by her neurologist and MS nurses.
Fingers crossed it’s nowhere near as bad as your worst fears, I think we all hear some of the bad stuff and panic!
Love & hugs going out to you
Sonia xx
Linda, you`re doing what I do…what if it goes wrong etc? Well as others have said Tysabri is a brill drug…so try to stop over thinking bad thoughts, eh?
Ha, I should take my own advice.
Iuv Pollx
Hi Linda. Last week I was in hospital undergoing my first Campath treatment. There isn’t a more potent treatment option available for MS (that I have been offered anyway)… Tysabri is placed just below Campath. That said, both treatments have their risks- like everything else, but I didn’t have any choice. My Neurologist’s very words to me were, " We need to hit this hard". The Neurologist is offering you the best treatment option available for Rachael’s MS. I met a lovely lady who was receiving her 54th Tysabri infusion. When she told me what life was like for her before Tysabri and what her life is like now, I was completely blown away- truely! She is doing amazingly well. You wouldn’t even know she has MS. Keep calm. Rachael needs your positive energy. Love and hugs from Tracyann xx
[quote=nindancer]
Hi Linda
My heart is going out to you (I really don’t know too much about RRMS and DMDs etc.) I just wanted to let you know that you have our support as always and I hope Rachel is being looked after really well by her neurologist and MS nurses.
Fingers crossed it’s nowhere near as bad as your worst fears, I think we all hear some of the bad stuff and panic!
Love & hugs going out to you
Sonia Totally agree with Sonia - you have my support.
Hey Linda
Let me tell you where I am at. I was on borh Betaferon and Rebif for a year respectively, they only slowed the severity but noit the rate of relapses. After a major relapse that put me in hospital for three days for IV steroids I was then put forward for Tysabri and I have now been on it now, relapse free, for over 4 years.
As for your concerns the PML, IF Rachael is JCV positive thenm this means that she has about a 0.3% chance of developing PML and this would increase if she had had any other immune suppressing treatment that is stronger than Rebif. I refused to take the JCV test as I ain’t even fussed about the risk of PML as it is so low. IF I had worried about and I hadn’t started it, I wouldn’t be were I am right now. I went to see me bro out Down Under in 2010, completed an Access to Health Studies course to try and get a local P/T OT course at a nearby uni. I am currently doing A Levels and will be starting a vocational qualification in Jan for 6 months. To keep fit I play wheelchair basketball as I am one of the very lucky ones who don’t suffer from the debilitating lassitude fatigue.There have been a some rare instances when people are either allergic to Tysabri or develop antibodies to it, but as I said these are rare.
The infusion nurses recently bullied me into taking the JCV test and it came back clear, a recent re-test and it came back positive. My response to this a massive PFFFFFFT! So what I am positive, after the quality of life and the things that it has enable I will be constantly taking that miniscule infinitesimal risk of 0.3% of developing PML. To me it is an absolute no brainer, after being on it for so long and seeing the benefits the treatment have brought me there is no way I will be coming off this treatment UNTIL they tell me that I have progressed to Secondary Progressive and it is no longer working for me.
Yes I know that that it sounds really worrying but the risk is so small and the benefits far outweigh the risk, let Rachael try the treatment even IF she is JCV+, the benefits that it could bring it could be untold, yet if she doesn’t start it she could end up in a very bad place.
I hope that this helps you put your mind at ease a little and that you can think about this logically and realise what benefit it could be to Rachael. I know that is natural for a mum to worry about a side effect like PML, but I, personally think that it could be very detrimental to her if she doesn’t start Tysabri.
Andy
Hi Linda, If JVC is weighing on your mind, you could ask about copaxane too. When avonex stopped working as well for me and I started having reactions to it, they switched me to copaxone. Apparently it works differently in the body than the other 3 drugs so might work when rebif and avonex don’t… I know in some places, parts of Canada for example, you have to try both an interferon and copaxane first before they will put you on tysabri… For this reason. So if you are both really anxious, you could discuss this possibility with the neurologist. Just a thought. Hang in there and healing vibes to Rachel x
Thanks guys, trying to take deep breaths and relax but so far not succeeding too well. For a few minutes I forget and have the feeling of doom in my stomach and wonder why then it hits me again. I just can’t get the phrase “it can lead to death” out my head. My beautiful daughter could die from her treatment. I know logically that it is a very very low percentage and I hope my logic will kick in some time soon and take over my fear. I will certainly ask about Copaxane when we are there on Monday for her to start her steroids. Linda x
I really feel for you. What you want - of course - is a risk-free option that will allow you to protect your dear daughter from all harm - but no risk-free option is available. You are caught between a rock and a hard place: the frightening real risks of very active MS -v- the small but also frightening theoretical risks of medication to help. It is an awful burden for a person to bear. You hang on in there. You will get to calmer waters where you are able, with advice from the experts, to stand back and think about the options and help your daughter to do the same. I hope that you grind through this latest round of troubles without too much wear and tear - you will get there.
Alison
Hi RachelsMum, I totally understand your concerns re Tysabri! Having had to make that decision myself recently… all i could hear was ‘severe disability or death’ I didn’t want to hear the benefits, or didnt want to know much more, I just went into to total shock-mode…why would I want to put myself in this position? It took me a good while to get my head around it all, even to ‘consider’ reading about Ty. The figures they quote were all a blur, i tried to put it into perspective by 1in 1000 or 1 in 400… for pulling a ball out of a ball-pool you have got no chance but winning the lottery you think 1in 400 is great!depends how you look at that one- but as we learn knowledge brings confidence and it is REALLY important to consider the whole picture. Please do read more about Ty there is lots of factual literature available-because of my relapse rate my neuro kinda ‘told me’ i was going on Ty - i was like - hang on a minute this is my decision but he is a helluva knowledgable fella. My MS nurse answered tonz of my questions (a whole A4 page actually)…sorry to go so much but I really felt for you cos was right there where you were. I have just had my 7th infusion (just a baby eh), I am JC positive,(did you know if your daughter is JC- that can change to + they test it annually) that thought doesnt leave me ANY day but the benefits from the Ty are great. I have a MRI 6monthly and get a phcall everynight b4 my infusion from the MS nurse clarifying any changes…if JC+ they seem to monitor you a little closer. If you want to PM me and ph for a chat PLEASE DO if i could help you in any small way. Sending you huge hugs to help you and Rachel make your own decision xxxxxxxxxxxxxxxxxxxxxxx
MS nurse just phoned. The bloods and urine came back negative for infection so Rachael is going in this afternoon to start steroids for the next 3 days. I asked about the JC virus and she said that the neuro decided against checking for that just now and would wait for results of MRI in about 6 weeks or so. Also, on reading about Tysabri, I read that you have to be 18. Rachael is only 16 so would she be able to get this? Has the MS nurse and neuro forgotten how young Rachael is or can they start you on Tysabri even if you are so young? Linda x
Hi again Linda.
Just wondering, maybe this question has already been asked, so forgive me if that is the case…also if my questions offends you.
Does your GP know the anxiety you are going through? It is by no means any wonder that you are worried sick about your daughter. But perhaps you need something to take the edge off your level of anxiety, eh?
luv Pollx
Hi Poll, have not told or saw my GP to discuss me. I feel such a fraud even thinking of me as Rachael is going through so much, I don’t want to try and make this about me. Whatever I am going through with worry is nothing compared to what she is going through so I won’t even consider trying to get help for me as I just need to get a grip and man up. Oh and btw, I am not easily offended so don’t worry about asking anything. Linda x
[quote=“Rachaelsmum”]
Hi Poll, have not told or saw my GP to discuss me. I feel such a fraud even thinking of me as Rachael is going through so much, I don’t want to try and make this about me. Whatever I am going through with worry is nothing compared to what she is going through so I won’t even consider trying to get help for me as I just need to get a grip and man up. Oh and btw, I am not easily offended so don’t worry about asking anything. Linda x
[/quote] You are not going to help your daughter by neglecting or down-playing your own health and welfare, rachaelsmum - please do not let yourself be drawn into trying to strike that sort of deal with Fate. That isn’t the way it works. In fact, the demands you face at the moment make it particularly important that you look after yourself, the better to support your daughter. Please give yourself permission to accept that you need to keep your own show on the road. A chat with the GP on your own account might be no bad thing. Alison