I've been offered Tysabri or Mavenclad? - Advice Gratefully Accepted Please

Everyday living
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Hello, I was diagnosed with RRMS on 21st December 2020.

I just had a really helpful 1st visit with my MS Nurse this week, and feel like I have a lot more info and a plan going forward now, and I now know that the 2 lovely MS Nurses are just at the end of a phone or email, should I need them, that in it’s self is such a relief after a year of worry.

After hearing my symptoms, the Nurse says that I have been relapsing quite often this past year and although I felt better for the couple of weeks before Christmas, come Boxing Day, I started relapsing again with burning soles, bladder issues and joint pain and, of course, disturbed sleep because of this.

I started 5 days of methylprednisolone steroids today.

The Nurse has told me that I qualify for DMDs and has advised me to chose from either Tysabri or Mavenclad.

Please could anyone who’s tried or is on these give me some insight?

I’ve used the search box on this sight but all the results that come back are from 2011/2012, so I was hoping for some up to date experiences from anyone taking these DMDs please.

Thanks for your time :slight_smile:

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I am sorry that you have an MS dx. It sounds as though your MS is pretty active, and so they are offering you two of the most effective disease-modibying drugs. It sounds like excellent news to me that you have the opportunity to take one of the drugs that really can stop MS in its tracks (as Tysabri has done for me for 10 years), and that you are doing so before MS has much chance to cause you trouble. That’s really good.

Tysabri has been a wonder drug for me. I had been on Avonex (one of the less effective injectables for 10 years before that, and the Avonex had stopped working. I wish I had started Tysabri earlier - it might have spared me some permanent disability that I accumulated later in my spell on Aavonex, but there you go. I am glad to be on it now - I have had 10 relapse-free years and feel so much better in myself - and I’m glad that you too have an chance to get started on Tysabri or one of the very effective alternatives.

A useful piece of information before starting on Tysabri is your JC virus status - the nurse will probably have talked to you about that. If you are JC+, you have more chance of getting the brain infections PML if you are on Tysabri for a couple of years. In your shoes, I would want to know my JC virus status before deciding, as being JC+ might incline me more towards Mavenclad, all other things being equal. But you won’t know until you’ve had the blood test.

Good luck.

Alison

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Thank you for this Alison, that’s great to know how much better Tysabri has made you :slight_smile: That is the drug my Nurse said is her preference for me of the two. I had wondered if I could ask to have the JC Virus test before I decide between the two and was thinking about emailing the nurse to ask. I’ve also read that about 80% come back with JC+ and most still chose to go ahead with it anyway as it’s so effective and the safety and monitoring if you are JC+ is very good, would you agree with this? I am leaning towards this one though. When you first started it, did you have any of the side effects mentioned? And having been on it for 10 years now, do you have any liver problems from it? Also, can I drive straight after having it as I don’t have anyone who could take me for treatment?

Thank you :slight_smile:

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Hi YorkshireMix, hope you had a lovely Xmas and new year. I like you have been offered a choice of the two but had actually been doing really well so I queried whether I needed them or not as I’m concerned about liver damage my medical journal so far has been intense with opioid based meds and I’m so put off to keep taking them but how to u ‘adult’ without?! Then Xmas day struck and I relapsed, the shortest I’ve had actually it lasted 6 days before I started to improve so. Now I’m adamant I’ll be choosing one of these. Can I ask how u have got MS nurses? Is that you health centre or specialist who got you that service? I’m stuck ringing my GP who after 6 years of been unwell I can honestly say could retire on me! Xxx

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You might think of joining the UK Tysabri FB group - there’s good support on there lots of people to ask about things. It’s a private FB group, but not properly confidential like this one, of course, which might be a consideration.

I have never had any side effects, really. A bit tired for the rest of the day, but nothing to signify. LFT and other routine blood-work has always been fine so far. Oh, and I have always driven myself to hospital.

I’m sure you’re right about monitoring for JC+ patients, and it is always worth remembering that the first two years of treatment carry very low PML risk anyway. But PML remains as serious a matter as it ever was, and, while the risks are now much better understood, they haven’t gone away. The test wasn’t widely available when I was starting, so while PML was known of, I didn’t know my JC status before starting, and wouldn’t have cared if I did, mainly because there just weren’t any highly effective alternatives, and I needed something strong, and fast. Things have changed there, and it is good that there are alternative menu options, whether now or at some future point when Tysabri is working well but PML risk profile suggest a swap to an alternative.

Good luck with whatever you decide. I think your inclination to ask for a JC test makes good sense. There are no right-wrong answers, but everything that helps inform the decision process is good.

Alison

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Hi Alison, that’s great to know I can drive there now :slight_smile:

May I also ask re: Covid, if you have to shield? Are you classed as clinically vulnerable when on Tysabri as it says ‘increased risk of infection’?

Thanks again :slight_smile:

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Hi

Sorry forgot to mention I also had methpred iv for five days then oral which I’m still taking

decreasing 1mm a week.

Carl.

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I started Tysabri in December and had my second infusion on Monday. So far, so good and haven spoken to the lovely people on this forum I feel it is the correct decision. I wish you all the very best.

Maryxx

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Hello Hayweb, so sorry you’re in the same place as me, it sucks :frowning:

And you’re mirroring me with a relapse at Christmas too :frowning: Glad yours has started to improve. Mine started Boxing Day with Bladder problems (slightly improving), elbow and knee joint pain (now gone) and the absolute worst painful burning in the soles of my feet which is still here and keeping me awake most nights Grrrr!

My journey to the MS Nurse was quicker only because I was pro-active and chased it, which after such long wait times and cancellations for everything non-covid related this past year, I truly believe you’ve just got to take control of your own path and bang on the doors all you can right now.

So, firstly I would advise to bypass your GP, if as I suspect, they are anything like mine, I’ve been with the same one for the last 19 years and he missed THIS, so I feel your pain there! Plus, there is no one more invested in getting you better than YOURSELF, so don’t leave it to others if you can help it. After my diagnosis by phone on the 21st December, the neuro said he would be putting me in touch with the MS Nurses and also starting me on steroids, which he would send out to me to start after Christmas. I had previously obtained the phone number and email address of my neurologists secretary (you can get that from the hospital switchboard) because I had to fight for a diagnosis after my face to face appt with the neuro was cancelled, I begged appointments to give me a phone consult to no avail, so even though the secretary’s answerphone message said ‘if your query is about appointments, please call the appointment booking department’, I ignored it and instead left a message appealing to her to help me get a phone diagnosis before the year was out. She came through for me within a week with the appointment for the 21st, she was so lovely, super helpful and knowledgeable too. So I knew when I got new symptoms on Boxing Day and once the post started coming through again and I had no letter or prescription as promised from the neuro, that I could just contact her again, this time I emailed as it was the holidays on the 30th Dec and explain what the neuro had promised and that I had new symptoms and could I please have the contact details of the MS nurse so that I could talk it through with them. By the next day I’d had a reply, even though she was on actual LEAVE, as was my neuro, she still actioned a letter and the prescription to the Nurses, and they both emailed me and phoned me that very same day, the 31st, offering me a face to face meet just 5 days later, which if you read some of my other posts, I explain how that went - i.e.brilliant! I couldn’t be more grateful to the secretary and the nurses, they were all so understanding and so accommodating and so lovely. So follow my lead and hopefully yours will be just as nice! And … I just got a letter through today from the booking department with my ‘original’ appointment to see the MS Nurse actioned by the neurologist on the 21st Dec. The date for that FIRST appointment with them was in MAY!!! SOOOO glad I didn’t have to wait that long!

I’m with you on being adamant on taking DMDs, I know some people chose not to, and there are worries with the side effects, but I still feel young and if there is finally a chance of having some symptom free years ahead of me after living with this for maybe 22 to 27 years, with NO treatment, then YES PLEASE! I too have had a lot of Diclofenac and Naproxen and Co-Codamol over the years, so I also worry about liver damage, but my feeling there has been helped by the MS Nurse and this forum, I am put at ease that the continuous testing that gets done whilst we are on these drugs ensures that anything untoward is picked up quickly and then we can make informed decisions to change course from there before it gets too bad, so I’m really not going to let that worry me anymore. I’m leaning towards Tysabri at the moment, however I’m going to ask for the JC Virus test first and get these steroids, and the 14 day self isolation I have to also do whilst taking them, over first and then I’ll get pro-active again with the next step - DMDs!

All the best, stay in touch and let me know if you get through to the nurses, I’ll keep fingers and ‘burning’ toes crossed for you :slight_smile:

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Nope. Not ‘clinically vulnerable’, just bog standard ‘underlying health conditions’ for COVID vaccine purposes, like most of us with ‘uncomplicated’ MS. Mind you, I pretty much have been shielding throughout because I’m so scared of being grounded and missing my Tysabri appointment! Not entirely successfully, but that’s another story…

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Ah, that’s good news because I don’t want to have to shield :slight_smile: But yes, that is another worry about having to go into hospital every 4 weeks for it. I’m not one bit scared about getting Covid, rightly or wrongly, I just don’t want it to stop me getting to my appointments! I was also avoiding everyone last year as I just couldn’t risk not being able to attend the precious appointments & MRIs I’d fought for! I got through them all fine in the end with no hicupps, but I do reckon we are still in the running for another year of Covid, so that does make me ponder the ability to get there every 4 weeks without ever having Covid derail it! Have you ever had to miss one then? Not just in this last awful year, but anytime in your 10 year run? What is the protocol when you are ill, not even Covid ill, it could just be bog standard flu or something else? Or how about if you want to go on holiday for a month to catch some winter sun (in the non Covid world of my dreams!)? Or what if you’ve got a wedding or funeral etc? Is it STRICTLY 4 weekly or is there any leeway?

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HI

Would appear that a message I sent you yesterday seems to have disappeared into the etha .

I was diagnosed end of July and started on meth pred which I still take decreasing by 1mg a week.

I saw a neurologist end of September who told me I have RR MS I’ve yet to see any change although

my eye sight is a little better.

I have been told by my MS nurse I am going to start either Ocrevus, Tysabri, Lemtrada which are all infusion but as of yet

I have know idea which one or when.

Regards

Carl

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I week here or there shouldn’t make much difference. If I’m away for Ty week, it has always been possible to have one 3 week month and one 5 week month to get back on programme. That was pre Covid world of course, and that has brought some changes. Last year, some Tysabri centres moved to 6-weekly instead of 4-weekly without the option for Covid reasons. As I understand it, most people are fine on that regime. There was no disruption to service where I am, but I made the mistake of moving to 6-weekly unilaterally because I was afraid of Covid. It was a bad decision - half way through my second 6-week gap, my MS, which has always been very active, started breaking through, and I got back on 4-weekly in a hurry. And yes, I have has some disruption to schedule owing to my OH self-isolating (although well), and the nurses, very sensibly, telling me I must not go near the hospital until I had done the same and also had a negative test. So yes, COvid disruption is a real consideration in the short term. With luck, it shouldn’t be a concern in the longer term, though, and it’s the longer term that you will be wanting to think about.

Alison

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Hi Carl, it ended up in my private messages … I sent you this reply …

Hi Carl, sorry you’re in the same place as me, it sucks but I’m glad you got some help from an MS Nurse, I found mine so helpful too.

I think I am leaning towards Tysabri. The hospital trips every 4 weeks don’t bother me as I work for myself so can manage to work around them. The chances of PML are 1/1000 so much lower than many other side effects and I’ve read that even those who test positive for the JC Virus still opt to go ahead with this because the results are so good and the chances of PML so low, plus you are constantly monitored for safety if you do test positive.

I understand your concern about your immune system as it does say that it gives increased risk of infection, I’ve asked Alison on the thread I started about that as she’s been on it for 10 years, but she hasn’t got back to me yet, keep an eye out for her answer to that to see if it helps you and perhaps speak to your MS nurse again to be sure. The other thought is that with COPD aren’t you already shielding anyway with Covid, so I would presume you would continue that whilst covid is still about, which I honestly reckon will still be all this year, so perhaps factor that in with your decision.

I’m just on my second day of the methpred, tablets taste awful but otherwise no problems so far, I was supposed to have iv like you but the neurologist didn’t want me in because of covid. Still I was told to self isolate anyway for the next 14 day due to their potential to lower our immune system! How have you got on with the treatment? Do you feel any better? I’m told I will start to feel ‘incredible’! I’m hoping that’s true and I finally get a reprieve from 4/5 relapses in less than 9 months! But at the moment I can barely sleep because the soles of my feet are BURNING, so painful :frowning:

Stay in touch and let me know if I can help or what you’ve finally opted for.

All the Best

YorkshireMix :slight_smile:

P.s. Alison has answered that question now, have a read above at her answer.

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You’ve been so helpful Alison and put my mind at ease on some important Tysabri questions, THANK YOU SO MUCH!

If I think of anything else, I’ll drop you a message.

Take Care x

1 Like
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Hi Mary, I could swear I answered your post yesterday but it’s disappeared!

Thanks for your reply, I presume by ‘so far, so good’ you are referring to no bad side effects yet, which is great. But how are you feeling MS wise? Any improvements yet, or is it too soon?

Many thanks :slight_smile:

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I definitely agree… it really is a fight to get help! I also fought for years after being told I had fibromyalgia. I fought for testing and got my diagnosis just before Christmas. I have been on oramorph, naproxen and tramadol for a very long time and had to insist on regular checks of my organ functions. Being on 25 when I got unwell they insisted I’d ‘be fine’ and luckily I am suffering no side effects of the drugs (touch wood). I don’t no where your hotspots are but an amazing Xmas present I had last year was inflatable leg splints. The kind an ambulance uses int he field when a leg needs securing or a cast. The pressure they put on helps my legs and feet as that burning pain is my worst enemy! I also use sunbeds to help with whole body aches and pains and it’s a great relief. Heat and pressure for me are my cure for a short part of my 24 hour drama! You sound so positive it has made me smile! So thank u for that xx

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No major changes. As my neuro says it won’t undo anyhting that’s been done but hopefully will slow down any further progression.

Mary

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You are very welcome.

A

x

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Hi

Thanks for your reply.

The one thing I’ve learnt is we are all different and how something effects you is not how its going to effect me.

I haven’t noticed much change in my symptoms the tremor and unsteadies are still the same my eye sight is a bit better though this is from July 20.

My wife suffers with hot feet at night and she uses Magicool spray, get it on the internet.

Regards

Carl