Last reply 1 month ago
Natalizumab advice ?

Heya I’m really nervous to post this however I need really honest advice/help/information. I’ve been on so much medication for my ms and personally I think it has made my MS worse and my mobility has been really badly effected. Because of this I’m terrified of taking anymore drugs however my ms doctor has recommended IV treatment and I’ve been thinking about Natalizumab.. but everything I read is negative. Has anyone ever taken or on Natalizumab? What is your honest opinion on it and if Natalizumab isn’t right what other IV treatments are good? Thank you and thank you for being honest. I need the good, the bad and ugly side of Natalizumab. Natalie x

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gijs
1 month ago

Tysabri? You only read negative opinions? I, personally, love it. No – to minimal side effects, great recovery from symptoms, once a month treatment, am happy with it.

Of course, the decision is yours and should be consulted with your neuro after deep personal consideration 😉


criswell
1 month ago

I think it is a good drug and have been on it for 4 years.Haven’t had any exacerbation of or changes to my MRI in that time and had zero side effects. I did have more retinal thinning on my last OCT scan so my doctor suggested I might want to try Lemtrada but I would rather stick with Natalizumab for now.


stumbler
1 month ago

@natty15 , you can find all the previous posts on this treatment, by selecting the “Tysabri” link, which has been added automatically to the foot of your post above.


natty15
1 month ago

Heya thank you so much everyone for replying back. I’m sorry about the confusion. I’ve only been told the drug treatment by the name Natalizumab. I think I’m just a nervous wreck because of pre treatments and probably wasn’t a wise idea putting into Google. Gijs and criswell do you think it’s actually made a difference to your ms?


gijs
1 month ago

@natty15 no idea, hard to tell. All I can say – im symptom free after Tysabri. Neuro says its possible (especially if your MS is ‘young’), due to neuroregeneration, but steroids could work their magic with delay. Hard to say. Would love to get Ocrevus (once every six months), but neuro recommended Tysabri, so here I am.

What I can say – there are no side effects, I feel great and am closely monitored for JC virus ( I’ll also have a yearly LP to look for JC virus as well, which was a surprise for me, but what can you do 😉 ).

Hope to stay on it for a long time.


natty15
1 month ago

@gijis thank you for the help and information. Natalie x


rachschader93
1 month ago

I took 1 infusion of tysabri. It neither helped nor hurt me. I had 0 symptoms from it. I only took 1 infusion and moved which made it difficult to see if it helped any. I would be more afraid of the rebound effects than becoming jc positive. Good vibes your way.


natty15
1 month ago

@rachschader93 thank you for replying. I’ve been on so much dmd’s it’s unbelievable. I honestly feel like it was the worse mistake of my life. Before I started my ms was fair. Walking miles, walking full time, mental health was great and I was able to cope. Now my life is a complete nightmare and that’s why I asked this question.. as I’ve made a balls up with my life previously I don’t want to do it again.m Are you on new IV treatments or you not taking dmd’s? Natalie x


rosiemcgx
1 month ago

Hi @natty15

Sorry to hear you’ve had such a hard time with dmd’s so far! I’m new to MS, was only diagnosed in April and have had 5 Tysabri infusions so far. I’ve had zero side effects or problems with it so am very happy with my choice. Like others have said above I hope to be on it for a long time as it seems to be the best fit for me xx


rachschader93
1 month ago

I’m sorry you’ve had trouble with dmts. I am not as I just got switched neurologist to get put on tysabri but now the new neurologist said she wanted to get all of my MRI’s in to give me anything as tysabri was “potent” my next appt she said we would go over everything and we will come up with something.


natty15
1 month ago

@rosiemcgx thank you for replying. Where you given other choices of IVs before? What made you pick this one? Xx @rachschader93 my neurologist is useless tbh. I feel very uncomfortable talking to him as I feel like he puts you down. I feel bullied into treatments and why I ask help from him I have to fight him on everything. where I live we very limited on resources. Lack of support, 1 ms nurse 1 neurologist.. xx


rachschader93
1 month ago

The other neuro did that as well. My new neurologist i feel is caring and listens to me. I think she has my best interest at heart. She is very knowable and experienced. She’s great. You can ask for a referral to a new dr. Tell them there is alot of personality conflict and you don’t feel comfortable seeing him. That is how our works in the US but I’m not sure of other places. I’m sorry your having a hard time. Remember you have to be your own spokes person. Only you know what goes on with your body. If your not comfortable I would recommend a switch.


criswell
1 month ago

Hi natty,all I know is that I haven’t had any new lesions or new symptoms since I have been on Tysabri. I did have some retinal thinning on my last OCT scan so my doctor told me that means that Tysabri isn’t totally controlling my MS and he suggested Lemtrada. I am not sure I want to change because I am not sure that Lemtrada will do anymore than Tysabri and it carries significant risks especially since I have had MS for about 50 years and I am over 65 now. I actually feel fine now and I live an active lifestyle(biking,going to the gym and doing yoga). Not sure my immune system would rebound easily from a change in medications.


brando
1 month ago

problem with looking online is you will only find mostly negative reviews most of the time, because most people satisfied with the drug dont really wanna waste time saying how amazing a drug is.

I have been on tysabri for 10+ years and been symptom free for the entire period if this drug had nothing or everything to do with it I wouldn’t change it.

Tysabri is a

Excellent drug when you’re jc negative.

but its good drug when jc positive.

most health professionals are aware of the issues with this drug and being jc positive so actions plans have been made to address this where when it first came out there was none.

best of luck

Brando


rosiemcgx
1 month ago

@natty15 I was given a choice of all of the treatments available, including Lemtrada but I decided to choose Tysabri because me and my husband are hoping to have a baby in the next 18 months and Lemtrada would mean putting that on hold for a longer time than that. My neurologist gave me the option of hitting my MS hard and fast so that’s another reason why I chose the Tysabri over some of the other meds. I hope reading everybody’s comments is helping a little 🤗


natty15
1 month ago

@rachschader93 the US sounds epic to live in especially with having so much control over your MS. I’ve asked for a 2nd opinion to be told no. With where I live in Scotland like i said the opinions, professionals, resources are so short :/ thank you for your help I think I’ll try approaching my ms nurse again to get another opinion. @criswell, thank you for answering. Wow you have done amazing with your MS. What is your sercet to being so positive and any tips on a healthier lifestyle? @brando thank you for answering. Where you on any treatment before starting tysabri? If you were do you feel any difference with your MS? @rosiemcgx thank you. I’m pretty much in the same boat with my partner and wanting kids and think that’s why else I’m kinda worried about picking the right treatment.. I had a wee peak at your profile and I noticed you live close by. Sorry for being nosey and I hope you don’t mind me asking but how do you find your neurologist? As I said I don’t feel comfortable talking to mines and talking about treatments and it sounds like your had excellent advice. Natalie xx


sherryak
1 month ago

I was on Tysabri for a while & loved it. I was sad to have to stop taking it because I started testing positive for the JC virus. Everyone is different, but Tysabri gave me back music – everything no longer sounded like easy-listening elevator music. I loved getting music back. And my balance improved a little as well. Not everyone will be able to pinpoint improvements & it won’t help everyone the same. But it helped me & I am so glad that I picked that one. I take Lemtrada now, but it’s Tysabri that made me feel like some things had actually improved for me. Good luck picking (& finding) what’s right for you!


stumbler
1 month ago

@natty15 and @rosiemcgx , please ensure you don’t names names in a post on Shift.MS. It is an open public forum and we need to avoid legal issues.

Names and opinions can be passed by Personal Message. 😉


brando
1 month ago

I was on Betaferon before I went to tysabri, for roughly 3 months and i didnt enjoy it but i still did it.

I didnt notice any difference just the results of me not getting anymore symptoms. once starting tysabri.

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