@Ancy

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Ancy

Any advice on Tysabri fears

Hi 👋 first time poster here 😀. A brief (I hope) background. I was told I had tumours on my brain and spine which were highly likely to be cancerous. Cut to 'downgrade' (not my words) to MS. I am under a neurologist who said I need to forget the notion that all the different types of MS were the way to view it. He said hes put me under the bracket of rapidly evolving MS and to start treatment with Tysabri. When I mentioned my worry about PML and wanting to be tested for JC virus prior to any treatment he said being tested for JC virus wasn't something he was aware off. My care so far has made me uncomfortable and I've lost any confidence in being treated and monitored by the team. I had to have 2 lumbar punctures as my spinal fluid was originally lost. I've seen lots about ocrevus and just wanted any advice about requesting that over Tysabri. My only problem with Tysabri is the risk of PML. I have had health anxiety for over 15 years, that coupled with fear of not being monitored correctly is just making me feel lost and alone in my diagnosis.

Stumbler

@Stumbler

@Ancy , well, Tysabri is a monthly infusion, ad infinitum. Or, until the regular monitoring (yes, your JCV status and titre levels) suggest that a change of DMT would be advisable. On the other hand, Ocrevus is half yearly infusions, with clinical trials showing good results.

Ancy

@Ancy

@Stumbler thanks for replying. Yeah, I was curious if everyone (or at least most) people had the JC virus test prior to starting treatment and were monitored regularly. Or how people made the decision to take tysabri over drugs like ocrevus etc just a bit lost 😕

KateB

@KateB

@ancy It does sound a bit incompetent that he wasn't aware of the test. I am also trying to make this decision right now and share your concerns. My understanding is, that if you test negitive then your risk is virtually zero, BUT, you could potentially pick it up after the test. I recommend watching Dr Alan Boster on you tube. He is fantastic at explaining things clearly

KateB

@KateB

@ancy I mean Aaron Boster

Ancy

@Ancy

@KateB thank you I will have a watch. My doc said they would monitor me after a year of being on Tysabri which definitely doesn't sit right with me 🤷🏽‍♀️

wjgregg

@wjgregg

Dear @Ancy, I see that you are U.K. based, so would receive treatment on the N.H.S. I have been on Tysabri for 3 years+, with no ill effects. I cannot recommend it highly enough. I was JC- initially, but turned to +ve last year. Blood samples are taken regularly, to check JC levels (I suspect that is an obligatory part of receiving Tysabri in the first place). The N.H.S. is "clued up" on what is necessary, I have found. My advice is to discuss it fully with your consultant and M.S. nurse, making it obvious that you know what you're talking about, and crack on if you're comfortable with taking Tysabri. Another positive with Tysabri is, as fas as I'm aware, there are no problems with taking vaccines (which looks like they are going to become an increasing feature of our lives). Good luck with whatever path you choose. Best wishes, Jon

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JamesC83

@JamesC83

@Ancy That is alarm bells that you’re neurologist isn’t aware of the JVC test. Doesn’t sound like a good neurologist I’m afraid. They should be doing that as part of the essential monitoring. But Tysabri is a brilliant drug - I had those fears but you soon forget about it when you realise how good a drug it is. I think you need to speak to another neurologist though, particularly an MS specialist. Tysabri is preferable to Ocrevus at the moment because of issues with ocrevus and coronavirus vaccine. Where are you based? My MS specialist neurologist at the RBH is very good and is very knowledgeable on Tysabri etc. Don’t know if you can get a referral?

Ancy

@Ancy

@wjgregg thanks for the reply, I have an initial meeting with Ms nurse in a few weeks so hoping that she is able to discuss my concerns 🤞🏽the drop in relapses with tysabri definitely makes the drug look promising. I know my consultant is very busy but at times I feel like he thinks I'm being a slight nuisance when I want to know and understand more what's going on with me. 🤦🏽‍♀️

Ancy

@Ancy

@JamesC83 thanks for the reply, yeah I was slightly confused when he said they would only check me after a year or so with Tysabri. He is an MS specialist so confused again as guidelines say to check titre level of JC antibodies prior to treatment but I guess its impossible to keep up with all guidelines for drugs. Hoping my MS nurse can squash some fears. Ideally I'd like to transfer my care, I live in Bucks but would travel basically anywhere for care I was confident in 😨

zuric

@zuric

IMO Tysabri should be the first line defacto treatment for MS. I spent many years trying various first line drugs such as copaxone and Tecfidera that had little impact. Long term the damage caused by relapses during this period probably had the most detrimental impact on my health. I have been on Tysabri for around 2.5 years with zero side effects and no relapses. I remember PML being a big issue for me, it was a scary decision to make especially having a young child. However they stretch my dosage out to every 6 weeks, this significantly brings the risks down to a negligible level, I don't worry about JC anymore as I know it's unlikely. I originally tested negative for JC however about a year ago tested positive. They do bloods regularly before the infusion and an MRI every 6 months. I couldn't recommend it enough, I just crack on and live as normal a life as i possibly can.

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KathrynH

@KathrynH

I tried all the first line drugs (Betaseron, Avonex, and Copaxone) and continued having relapses. Finally went on Tysabri once they understood the JC virus connection. I tested negative before I started. I have been on for nine years - because I have been on so long, I am getting some general immunosuppression effects, and they now test me quarterly for JCV (I am in California). Tysabri changed my life. I no longer use a cane. I have not had a relapse in 8 years. My vision loss stabilized. I have less fatigue. It is a fantastic, brain preserving drug (yes, I stopped having measurable brain volume loss as well!). It absolutely should be a first line drug. And give me a monthly infusion over self injecting any day! I like my infusion center nurses. Get familiar with this site https://multiple-sclerosis-research.org - they are brilliant and kind and you are UK, you can quote them to your neurologist, who clearly needs remedial education! Good luck!

RoxanaM

@RoxanaM

@Ancy, you definitely need to change your neurologist. PML was the first thing that my neurologist told me when we discussed about Tysabri. I had to choose between Tysabri and Ocrevus. I was diagnosed in September 2020 .. bad year for me 🙄...or a blessing😅..can't decide 😅. Eventually I did choose Tysabry ..even if I am a bit scared of PML ( in few days I will have my JCV results 🤞)..but I'm positive about the decision I've made. Unfortunately they don't test for JCV previous to the treatment..they do it when you have the first infusion. I did ask why they don't test before so we will know what are the risks..and they told me they need to wait for NHS funding ..being an expensive drug and the test will be made overseas ( if I understand well) 🙄😅.. I understand that Tysabri is the safest drug you can be on considering taking any vaccines including Covid-19, that's cheer me up 😅🤞. I have just 24 days on Tysabri ..and I feel great ..no side effects...my MS nurse told me will take some time untill all my simptomes will wear off as I just started treatment..but they are almost gone ..I feel like myself again ..I can do activities with my 4-year-old .. I hope you will be ok ..and this treatment will help you ..think positive.

Ancy

@Ancy

@zuric thanks for your reply :) it does seem like a pretty good drug, glad you've had no relapses or side effects. That is fab 🙌🏽

Ancy

@Ancy

@KathrynH thank you for your reply!! Ah that is fab with the results you've had from it, also thank you for popping that link it i will refer to it at my ms nurse meeting xx

Ancy

@Ancy

@RoxanaM thanks for replying :) ah I'm glad you're feeling like yourself again. I will definitely query them over the non testing prior to treatment because the gov website and most UK ms websites say you get tested prior to treatment (also to help patient feel a bit more in control with decision making) but I imagine I'll get the NHS funding point as their answer 😪 X

RoxanaM

@RoxanaM

@Ancy, this was what they answer when I asked ...I don't know ...maybe because of Covid ??! Maybe you will be luck and be tested before 🤞😅.. Merry Christmas btw 🎄🎅⛄

Ancy

@Ancy

@RoxanaM ahh maybe covid but I think I will end up with NHS funding being mentioned 😶😶fingers crossed 🤞 Merry Christmas to you too ☺🎅🏻

KellyV

@KellyV

Hi, I’m on tysabri for 6 months now, I have been tested for JCV, I see my neurologist every month if I go in for my infusion. Just had my 6 month MRI scan, everything seems normal at the moment. I don’t have any side effects. I’m happy with tysabri. Hope it will do it’s work for a long time.

zuric

@zuric

@Ancy i'm not sure if this helps at all but there are lots of other groups that are at a higher risk of the JC virus such as those receiving organ transplants, on specific cancer treatments, people who have rheumatoid arthritis etc. If you opt for a 6 or even 8 weeks dosage as opposed to every 4 weeks the risk of actually getting PML is reduced by 88 - 94% making the actual risk of getting it negligible, I seem to remember it being like 0.1% (I would double check this, but it's low). 6 - 8 week dosage apparently does not decrease it's effectives. To put this in perspective I went for a colonoscopy recently (nothing serious). On the paper work I signed there was a 1 in 200 chance of it rupturing my bowl. Point being there are far more dangerous things you're likely to come up against in day today life than getting PML, although it does sounds scary, and put me off the decision for a while! But I will be honest relapses are far worse and usually in my case permanent. My MS nurse told me she has been giving it out for 15 years and never had a case of PML. Anyway good luck!

Joajoa

@Joajoa

I wonder if the testing for JC virus is NHS dependent. I’m in Scotland and they tested and waited for results before they put me on tysabri. I am positive, but chose to go ahead. I’m glad they tested before the first infusion, good to be fully informed

Ancy

@Ancy

@KellyV thanks for the reply, ah that's good. Good luck with it x

Ancy

@Ancy

@zuric I think because PML came up when searching about Tysabri I have got absolutely petrified reading about it 🤭🤦🏽‍♀️the 6 week dosage sounds like a good shout, will definitely discuss with my ms nurse when I meet her 😊 very true about coming up against dangerous things in life in comparison to PML. Thank you again for your messages

Ancy

@Ancy

@Joajoa ahhh very possible about it being nhs dependent, I hope my trust does the testing prior 🤞🏽

zuric

@zuric

@Ancy It's the most scary thing when deciding to go on this, however I think it's one of the few symptoms people experience and it's rare, so far touch wood I have had zero side effects which is rare with almost any drug. I have a 3 year old child as well so it took a while to weigh up the decision but in the end I deemed the risk negligible comparatively to the almost certainty of further progression. Some info below for you to look at, also if you're deciding on a diet the book Healing Multiple Sclerosis really resonated with me. I found it recently after reading new research papers that suggest fungi entering the blood stream and into people's brains with MS's may be the cause, but you have to do what's right for you and go with how you feel. Anyway I don't usually post on theses forums so will probably be my last post, best of luck. https://mstrust.org.uk/research/research-updates/191209-tysabri-dosing-interval-pml#:~:text=Overall%2C%20the%20studies%20do%20suggest,appear%20to%20increase%20with%20EID. https://pubmed.ncbi.nlm.nih.gov/29859870/   https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5650687/#:~:text=Many%20links%20between%20fungi%20and,conditions%20linked%20to%20fungal%20infections

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Ancy

@Ancy

@zuric you're a star thank you for posting those links and for the recommendation of the book. I have gone with the OMS diet but I am quite new to this so will see how it goes. I hope the drugs side effects stay far away from you, best of luck to you too 🙌🏽

KateB

@KateB

does anyone know how many people have actually died of PML from taking tysabri? (just to help me and others put it in perspective)

cameron

@cameron

Changing teams is permitted under the NHS England Charter (not in Scotland, I believe). By transferring from my local team (who were disastrous) to a London hospital, I came under the care of a specialist MS consultant and a specialist MS support team. It was my GP who saw how the land lay - how upset I was, how many questions were unanswered, how the general attitude was just not good enough and suggested the move. If you lack confidence in the treatment you're getting, I recommend telling your GP with a view to moving your care. Being seen by a team that deals exclusively with MS, whose consultants are involved in MS research and are training up the next generation of neurologists is the gold standard! PM me if I can help.

Vixen

@Vixen

Hi @ancy, glad you've had lots of good advice here. You most certainly need to change neuros, if not hospitals. I mean, was there an enquiry into how your spinal tap sample was lost? That it led to a second lumbar puncture is reckless! I'm also not sure that to tell a newly-diagnosed young woman that she has 'rapidly evolving' MS is at all helpful, unless the neuro feels he can isolate the start date for your condition??? Keep asking questions, and make sure your voice is heard. You have lots of support on Shift at the very least. You've been through a terrible time of it and need to be helped by your team to make decisions and start treatment. And yes, the Dr Aaron Boster Youtube clips are invaluable, he puts such a positive an chirpy spin on things. All the best, post any updates or questions :-)

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Eliot-S

@Eliot-S

Hey @Ancy I’m with @Vixen , change neuro! My husband had to wait for his JCV results before he could start treatment (we’re in Wales). He is JCV + with a middling titre and had blood tests every 6 months and MRIs once a year from the start. We were terrified about PML, but he was so desperate he took the risk (we were told that no-one on Tysabri in either Cardiff or Swansea had ever contracted PML). He’s off it now. It took so long to get diagnosed that he’s moved on to secondary progressive and feels there is no longer any benefit to keep taking a risk for (he doesn’t have attacks and felt no improvement from the infusion). He had no ill effects from Tysabri, Ocrevus on the other hand... He opted for Ocrevus first due to the better safety profile, but it made him soooo sick. He flushed red all over, got scaley red blisters, cold sores within an hour of the infusion and over and over for months. Spasticity and pain in his legs was terrible and he could hardly walk. His immune system was screwed. He was ill so often and once caught a mystery illness that wiped him out for 3 weeks. He had a fever of 40, shook and coughed constantly; We were both so scared! BUT, no one else at the hospital had a reaction like him. He is 60 and we’ve since read that age should be considered when prescribing, but his neuro at the time was very head strong, blasé and set in her ways and dismissed our questions on the matter. She did a lot of things that made us very uncomfortable, but we felt awkward speaking up and she reacted with disdain when we did. My husband eventually made up his mind to change neuro. After writing to the hospital to state this he received a letter informing him that his neuro was no longer an employee. We believe a long history of bad practice finally caught up with her. Always speak up. Take a list of questions/notes/facts with you and if you are lucky enough to have a friend/loved one, ask them to accompany you as back-up. Write a letter so your concerns are on file. Good luck.

mcknighm77

@mcknighm77

Hi I just had second infusion with ocrevus. so far so good. I was nervous because after being diagnosed PPMS in 2016 i tried ocrevus in 2017 but had palpitations so i refused to continue with this medication. Meanwhile, I changed neurologist and he’s so patient and encouraged me to try ocrevus again. So I did. So far so good 😊 But ocrevus has been linked to breast cancer. So I worry about that. Good luck with your decision. Remember, your not alone. We just have to be our own healthcare advocates😉

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VickyS

@VickyS

Hi, my experience seems similar to yours I was diagnosed initially with a brain tumour. Thankfully the biopsy came back with no cancerous cells. After lots mote investigations I have been diagnosed with an active MS and prescribed Tysabri. I've had the blood tests prior to me being allowed to have my first infusion and it has come back as positive so have the JS virus, can't have Tysabri due to the risk of PML. I've now been offered Ocrevus or Cladrebine. Hope this helps x

amym

@amym

Hi, I don't know about your query, but I do know I was told anxiety can be a part of MS so also ask for a referral for that. Dealing with my anxiety has really helped me deal with my MS.

Ancy

@Ancy

@VickyS omg! So glad they came back non cancerous :) ah ok fair enough, I am awaiting my JC result but have had first infusion last week. Have you swayed more to one of the drugs you've been offered or unsure? X

Ancy

@Ancy

@amym good shout 😃I have been referred for neuro rehabilitation but will ask about anxiety help x

VickyS

@VickyS

Hey, I'm still trying to weigh up my options. I'm also having some CBT for coping with worry. Hope your ifusions go well x

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