Hi there, I had posted this in Newly Diagnosed, but was advised that possibly I could get more advise in here? Any help and advise would be very gratefullt received. x
Hello, I was wondering if anyone could give some advised on being treated with Tysabri?
My daughter (she’s 21) was diagnosed 2 weeks ago and has decided to be treated with Tysabri. We have all the booklet and the doctor speak and we spoke to a lovely MS nurse, but I was just wondering about just normal things really. How would a simple cough or cold affect her? She wants to book a holiday to America next year, will there be any restrictions on her? She’s going back to work on Monday, who have been very supportive, will she have to be careful if anyone she works with has a virus of any kind?
I know these probably seem like silly questions, but this is very new to us. The doctors originally thought she had optic neuritis, but her latest attack put her in hospital for a week with a three day course of steroids and physio. This has all happened within 6 months. She had her first attack in May, secong in June (both in her eyes) and she has now been diagnosed with rapidly progressing relapsing remitting MS.
maybe your daughters ms nurse could answer your questions regarding infections and travel.
its a brutal thing for a 21 year old to be diagnosed with but tysabri is said to be very good.
i’m sorry but i’m 54 with rrms so dont have first hand experience but i’m sure that some of the lovely people on here will be able to give you more help.
take care of yourself because you will be getting a lot of stress
Thanks for that. We are just trying to find our way around so to speak. She had a letter this morning saying that she will be contacted by various people like physio and occupational therapy, so now we should get some good advise. We just thought if we spoke to people lving with MS and being treated with the Tysabri, it would give us some more useful, day to day advise.
I am sorry to hear your news. MS does take a time to get used to, in all sorts of ways.
Unfortunately I can’t answer your questions as my experience of MS has been very different to your daughter’s. However, I have heard some very good reports for Tysabri.
I do agree with Carole, your daughter’s MS nurse would be a good source of information. The MS Society Helpline on 0808 800 8000 might also be able to help with some of your questions.
thanks for the advise, I think she’s going to contact them anyway, as we’ve been reading about flu jabs and things like that which we’re going to try and sort out.
I think the hardest thing we are finding is, learning to adapt so quickly. A month ago, she was just waiting for her neurology appointment, with no symptons except for her eye problems from May and June, and then in the space of the last month she has an attack which was so bad she was hospitalised and subsequantly diagnosed, treated with steroids and Tysabri, its been such a whirlwind.
I have been on tysabri for nearly two years now, it has stopped me relapsing and I feel that it has given my body a chance to recover and repair itself to some extent. I don’t think tysabri makes you any more prone to catching things - however do make sure your daughter gets a flu jab, my GP does mine, as catching anything can make MS symptoms worse, I always feel awful when I catch a cold and dread to think what flu would do to me!
At my hospital they plan ahead for the whole year and give you all the infusion dates in advance so that you can fit holidays around them. I think they can juggle things a bit if you really can’t avoid a clash - I believe they let you go as long as 6 weeks between infusions if necessary but won’t let you have one sooner than 28 days after the last one.
Thank you so much for that information. I read it to my daughter and husband and we all feel a little better for that.
Since she was hopsitalised with the last relapse, everything has moved on so fast, but everyone we have spoken to or that Katie, my daughter, has been treated by has been so nice, so helpful. She is coping so well with her newly acquired lot and we are so proud of how she is dealing with it all. She’s so young and life is complicated enough without all this.
We are just trying to find how people deal with things from day to day from other MS sufferers, we have read the booklets and spoken to doctors and nurses, but thought it would be best to speak to people with first hand experience so to speak.
So sorry to hear this about your daughter - l was 35 when l was first diagnosed - that was 30yrs ago. l have never taken any of the DMD’s as l have secondary progressive ms. For the last 5yrs l have been taking LDN and a highdose vitamin d3 10,000ius daily. plus vitamin b12. Both of which - people with ms are usually, for some reason very deficient in. You only have to google vitamin d3 deficiency ms - vitamin b12 deficiency ms for information.
l have a daughter who is nearly 30 - and l have always worried that she might develop ms - she does take vitd3 - which is the best l can do for her.
Don’t stop her doing any of things she wants to do - tell her to go for it.
The risks for PML are discussed quite specifically. It is part of the pre-prescribing appointment and the patient has to sign to say the risks have been discussed.
There is now a blood test for the JC virus which is done every year to check if negative/positive. If positive there is more discussion with neuro to decide whethet or not to continue.
I have been on Tysabri for two years now & no relapses in that period & no progression, whereas I had two disabling relapses in the previous year and my MS was rapidly galloping out of control. The risk of PML was fully discussed with me prior to starting treatment. I have an annual blood test for the JC virus to ascertain my exposure which to date has been negative. I also have monthly blood tests for liver & kidney function etc & am very closely monitored for signs of PML or any other potential side effects. I also have annual MRI scans which have shown no change. Tysabri is not a risk free treatment but for me the pros far outweigh the cons. I hate to think the state I would be in now if I hadn’t been given this life changing option. All the very best to your daughter, Lisa. She has been thrown a life line, if I was in her position I would grab it with both hands.
By the way, forgot to say that I work in a big office and I don’t generally get sick any more than anyone else, just if I do pick up a cold or any virus it does tend to exacerbate my MS symptoms but that is normal with anyone with MS. Also, it doesn’t interfere with holidays at all. Try to arrange travels around the scheduled infusions but they can shift them around if necessary or you can miss one if you really need to. I have just been away for three weeks and missed my last infusion, I’m due my next one on Wednesday & am ready for it. Hope this helps.
Does this mean that you’ve been offered Tysabri? It’s amazing. Yes all the risks are explained and we were offered the JC virus test, but we were willing to take the risk for a chance to recover.
Take it. Campath is excellent too. I have a friend whose MS was stopped by Campath and she has gone back to work.
No it’s not something my wife has been offered (and would choose to decline if it was). We have spoken to a couple of people who have been offered this, one was completely unaware of the PML issue (wasn’t discussed) and the other’s Neuro had gone into a great deal of detail.
I was curious more about how the drugs was presented to potential patients.
Hi there Thanks so much for all your comment. Katie had her first dose on 30th November before she was discharged from hospital. Everything was explained about the risks of pml and she had the jc virus tests. She’s opted not to know the results as didn’t think is was worth the extra stress it would put her under, knowing that is. The choice was really a no brainer. We felt the benefits far outweighed the risks. She is returning to work tomorrow, also in a large office, so it’s comforting toknow she won’t be affected any more than anyone else due to the tysabri. Lisa x
Oh sorry. I thought you were asking for you. Why would your wife decline it? We were told that the risk of PML only rises after 2 years? Isn’t it worth a try to get the MS under control? Or does she have PPMS soz.
This thread isn’t the place for my reasons not to take this product. That would be inappropriate.
My wife has had RRMS for 15 years is 6.5 on the EDSS scale, we have found a non drug related treatment that is making her better.
My question was posed as every Tuesday my wife attends an MS class at the local gym where a couple of the members have been offered this product, the information they were provided differed quite dramatically.
[quote=“lisaross70”] Hi there Thanks so much for all your comment. Katie had her first dose on 30th November before she was discharged from hospital. Everything was explained about the risks of pml and she had the jc virus tests. She’s opted not to know the results as didn’t think is was worth the extra stress it would put her under, knowing that is. The choice was really a no brainer. We felt the benefits far outweighed the risks. She is returning to work tomorrow, also in a large office, so it’s comforting toknow she won’t be affected any more than anyone else due to the tysabri. Lisa x [/quote] That’s great Lisa, good for Katie. Getting a diagnosis of MS is a real shock & a massive thing to come to terms with. A really important thing for me personally though is not to let it take over my life. Yes I may need to do things a bit differently sometimes & I do have to plan things more carefully, but I have pretty much managed to keep on doing all the things I used to do pre-MS & I feel much more in control now that Tysabri has halted the relapses & the spiralling progression. Attitude plays a big part. I’m sure with the support of you & her friends & medical team she will be ok. The early days are tough though, don’t be surprised if she has a few wobbles occasionally.
I am sorry that your daughter is ill. An MS dx is a shock for the whole family, and I sometimes wonder whether it isn’t worst for parents than for the person with the diagnosis.
I have been on Tysabri for about 18 months, and have had no relapses during that time. I am very glad to be on it. I have had MS for a little while now and have always taken the view that I’ll go with the least risky treatment that does the job, and that now means Tysabri - I am very glad that it was there when I needed it. I hope that your daughter does well on it.
I don’t think viruses in the workplace etc are more of a problem. The good thing about Tysabri is that (with a bit of luck) it helps a person get on with life with as few restrictions as possible. Travel insurance etc is easy enough to obtain, although it might be a bit more expensive (particularly with having ha a hospital stay). It goes without saying that it is important to ensure that the insurance provider is fully in the picture about history, dx and treatment etc.