Last reply 6 days ago
Confused about treatment

Hi everyone, I got diagnosed with relapsing and remitting MS just yesterday and I’ve been told we need to start treatment so it’s a good idea to decide what I want to go with. My options have been narrowed down by the MS nurse and neurologist to 3 based on the severity of my MS (I’ve had about 4 episodes in the past year, maybe more) and the symptoms I’ve been experiencing. These are Mavenclad, Ocrevus and Tysabri. I’m leaning more towards Ocrevus and Tysabri (both infusions) as they seem to be more effective at the moment as Mavenclad is a fairly new drug. I have read about them both and both have their pros and cons but I’m just hoping someone can maybe give me some insight into them based on personal experience maybe? Thanks in advance!!

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patirl
1 week ago

Hi @aansy sorry to hear about your diagnosis but there is a good life after this. I am 23 years down the ms route and was on tysbri for three years of that. I stopped because any good effects were gone for me but two other women that I met through having infusion were having great results 10 years on. But ocrivus sounds good and I would love to try it but very hard to get here in Ireland. Best of luck in your journey😊
Patricia


aansy
1 week ago

Hi @patirl – thank you for your message. If you don’t mind me asking, do you feel tysabri helped your symptoms while you were using it? I guess everybody experiences different symptoms but I’m desperate for a treatment which will help me recover from my existing symptoms which are becoming quite problematic in my daily life. After 3-4 minutes of walking, sometimes less, my legs just struggle to walk/lift/bend and I end up dragging my feet. Praying for a miracle treatment!


patirl
1 week ago

Hi @annsy
When I was on tysbri felt very well about two days after infusion and at last few days of month would know was due infusion because tiredness would be there. The reason I stopped was feeling good stopped and back then there were more risks attached to tysbri. There is great news about positive results for cure it will come we just have to keep well and don’t let it get to you. Bound to be so confused with new diagnosis of ms but you will find a way to live with it and find treatment for your it’s a lot of trial and error but you can get used to it. Just keep on trying there will be bad days but they pass its up to you once you keep positive. Ms treatments are improving. If one doesn’t work try other one.
Best Luck
Patricia

Sent


itsmewithms
1 week ago

I was diagnosed in 2005 and have been on Copaxone and Rebif with a change to Ocrevus this fall. You can use the little magnifying glass in the upper left to search for past discussions on most of the available DMTs. The two you have mentioned have had much discussion. While you are having an episode you may also be given a steroid infusion to shut down the impact quickly.

Sounds like you are lined up with good medical advice and this is a great forum to ask for personal experiences as you have- good luck! This is a global forum so you do have to watch that with responses as the same treatments aren’t available everywhere or universally preferred.


hlywln94
1 week ago

@aansy when I was first diagnosed I went straight onto Tysabri and it worked a treat but everybody is different. I’m not longer on it due to being high risk for the brain infection and could only have it for 18 months. If your low risk you can remain on it by the sound of things. But yes thumbs up for tysabri from me.


scotlass
1 week ago

I’ve been on Tysabri since August. I’m happy with my choice of treatment despite risks. I’ve read many posts over the past few months about the positive effects of this treatment. I’m not due for my next MRI until June time but what I do know is some of my symptoms are less intense and less problematic.
I feel very tired about 4-6 hours after the infusion and sleep for a few hours, quite tired remainder of that day but I feel great the following day and thereafter


lisa_morghan
1 week ago

Hi yes the Copaxone 20mg either daily or 3x aweek its a injection it easy to give auto inject you keep medication Cold its what saw the least side effects !!! Check out Copaxone 20mg – 40mg


fingersandtoes
1 week ago

Hi aansy, wow, I was diagnosed exactly two years ago today and I have to say, the treatment options available keep improving. It took nearly five years for my diagnosis and the lucky part of that was if I had been diagnosed straight away I probably wouldn’t on Tecfidera, which is what I’m currently on (and currently happy with).

Hopefully your doctor told you to check out the MS Trust website to read up on your options. I would also check out an American doctor on Youtube – Dr Aaron Boster. He has a few videos on different treatment options. He’s on Twitter too.

The thing I hadn’t considered when I started on Tec was the taking it twice a day, every day. You can never really put MS out of your mind. I had a couple of injectable options or Lemtrada, which is currently under review and not available as a first treatment. Lemtrada sounded full on and risky and I would have had to take a lot of time off work, so I decided against it. Five years of monthly blood tests didn’t sound great either! BUT the upside was after two treatments a year apart you might not need any more treatment!

That’s the advantage of Mavenclad too. I think given the option I would choose that. The chance of never having to take another MS drug. And if it doesn’t work, you can move on to something else.

But Ocrevus sounds more effective… all things to weigh up!


aansy
1 week ago

Thank you so much to everyone for your responses. It’s definitely helped me towards making a decision and I will take every bit of advice on board. I guess I need to continue doing my own research (also will be looking into Dr Aaron Boster on YouTube) and once I’ve made a decision I’ll see how I get on. Worst case scenario, if one treatment doesn’t work well for me I can always try something else. It’s so lovely to know there’s an MS community on here who are willing to support one another and share advice!


dominics
6 days ago

@aansy – I take Ocrelizumab and am due my third infusion Jan 2020. It has been completely hassle-free. I have had – twice for 24h – mild flare-ups of pre-existing psoriasis. Small patches and both times it went within a 24h period.

If I had my time again (this is my 4th med in 26y) I’d go down the hit it hard and as soon as possible route. I have ended up on Ocrelizumab. If it existed when I got diagnosed, with what I know now, I’d be on it (or Cladribine) from the outset.

The injectables are all far less effective than either of the two I mentioned.

The aim is to take you as far as possible whilst increasing the time to and reducing the severity of the disability that we all face.

It is a weird thing to choose a drug based on its ability to prevent future events, but that is medicating MS for you. The options that appear the ‘safest’ are far far less effective than modern drugs. I remember when the injectables came along (I have had beta-interferon and glatiramer acetate) and they were viewed with great caution. Nowadays they are thought to be ‘safer’. It is time on the market and the patient-years on the drug that makes everyone breathe a bit easier.

Good luck.

Best,

Dominic

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