Forum

DMD Treatment Help Needed.

Hello Everyone I had an appointment with my consultant to talk about DMD treatments he has give me the option of two DMDs Rebif and Tysabri i was wondering if anyone is on any of these and if so how are you finding them. Many Thanks Dave

Hi Dave

I’m on Betaferon which is similar to Rebif I think. Injecting every other day and I use an Autoject so I don’t have to see the needle going in.

I’ve been on it for about eight years and it really does reduce the frequency and severity of relapses. I have less than one a year now and even that is over much quicker and I can get back to work. There were some fluey side effects to start with but paracetamol took care of that.

I opted to go for one that is injected under the skin even though it’s more frequent. just because I didn’t like the sound of injecting into muscle. But I know others have found Avonex very successful so it really is personal choice. You can always change if it doesn’t suit you.

Good luck with whatever you decide.

Dave, Tysabri is meant to be a wonder drug. I’m on rebif personally. I think Tysabri is only offered to patients with rapidly evolving highly active RRMS. If I were you and my neuro thought I had that, I’d be straight on the Tysabri! You need to think about what’s best for you and the nature of your MS. It would be good if you got a response from somebody on it :slight_smile: good luck, Suz xx

Hi Dave,

I was on Avonex (thats the once a week injection)

It didn’t work for me but it works great for others as does Rebif everyones different what works for 1 may not work for another I was just having relapse after relapse every 4 or 5 weeks and was going downhill very fast I was on it a year but I was lucky to get the chance to get on Tysabri in August 2008 its been great no side affects for me (I used to be very Tired for at least 24hrs after the infusion) but after I was on it 2 years that pasted.

Best of all I’ve never had a relapse and Its got me out of a wheelchair and living an almost normal live again.

That didn’t happen over night I was a long road but I got there.

Personly If your neuro thinks you need it I’d crab it with both hands but thats me only you can make that choice for me it was easy I’d nothing to lose.

People say if I got Tysabri to begin with I’d never had to go through what I went through, You might think I’m odd or something but I’m glad I went through what I did I know how lucky I am now and so thankful for Tysabri I’ll never take anything for granted and I just make the most and enjoy what I have now I know how bad MS can be and for me anything is worth the risk holding that back as long as I can.

And the bit that really makes it worth while for me Is seeing my yearly MRI results and seeing there’s no more lesion’s since starting Tysabri and the report always says there’s a marked improvement every year.

Mark.

I did copaxone and Tysabri and the only one I felt better on was Tysabri and alot of people will swear by it.

Also its once a month infusion so maybe more convenient.

If your body accepts tysabri then all well and good, for me I had more energy and less relapses and my immune system hated tysabri.

Good luck though.

Sorry Dave, I meant to say that I have been offered Tysabri but have turned it down while the Betaferon is still working. The moment it stops I would start Tysabri without hesitation as the results sound better.

Hi Dave

I’ve just had my 5th infulsion of Tysabri and (hate to say it, feel like i’m jinxing myself!!) feel great.

Last year I was in a wheelchair, no - very little - control over bowels/bladder, no sensation anywhere below the collar bone, couldn’t use my hands, brushing teeth, eating etc…life was not a happy one.

I had been on Rebif which seemed to work well for 3 years before, anyway it stopped?

I seemed to start recovering from this epic relapse, but still couldn’t walk very far; probably about 50metres? Now I can manage round the supermarket unaided and even went to a few shops in town yesterday, no crutches. It sounds silly but it was MOMENTOUS! A bit of freedom!

Oh yes, and from August I could drive again, no hand controls or anything!

I really seem to be doing well on it and I know I’m nowhere near the only one! It comes with risk, obviously, but in my mind driving or crossing the road is a far huger risk (have you seen my driving lol??)

I have no side effects, don’t feel tired or anything? The only problem I have is they struggle to get the line in sometimes but that’s just my lack of veins!

Good luck with whatever you decide!

Donna x

Hello Dave. I was on Avonex for 10 years or so and it worked well for me for most of that time, then started working less well, and I have been on Tysabri now for the past 6 or 7 months and am (touch wood) doing well again now.

All I would say is that, if your neurologist is steering you in the direction of one option rather than the other, there will probably be a good reason for that, based on his judgement about how your MS is behaving.

Whatever you end up taking, I hope it does a good job for you. It is a good feeling, once you have started treatment, to know that you are taking positive action to keep your MS in check.

There have been some good discussions on the board about these kind of decisions, by the way - worth doing a search on the EL board search facility, if you have not already done so.

Alison

x

Hello Dave,

I have been on Rebif for several years and have found bit very useful. I never had any of the side effects, though I know that some people can suffer with this. I usede to have two relapses a year but the Rebif took this down to one every other year, and even these single ones were less of a problem. I find the injecting very easy, and really the only bad side is that I am covered in red bruises from the injecting, but this is not a problem. Good luck with the drug.

Yours,

Moira

Hi. I was asked to go for another mri with dye injected to see if i was eligible for the tysarbi. I declined upon reading the side effects and pml risk. I decided to opt for rebif which i am waiting to be delivered. I was only diagnosed mid july but have had 4 relapses since dec/jan so thats why i was offered the tysarbi and the consultant said i could always opt for it at a later date if needed. Karina x

Hello Everyone Thank you all so much for your support and info on treatments it’s been really helpful but after a long week of reading and thinking. I have made my mind up i am going for the Rebif so wish me luck. Thanks Again Dave

Hi. I’ve not Been on here in some time. Always forgetting my password. I’ve had a rocky first year after diagnosis but have always tried to stay as positive as I can. After seeing my nurse again June and then sept it appears I’ve had another couple of relapses whilst on rebif 22. I didnt realise they were relapses as I just get on with it and still go to work everyday. I got a bit of a roasting off my consultant for not trying tysarbi. He said my relapses are to do with my spinal cord and I won’t go in to detail but omg he really went mad as he said my ms isn’t the worse he’s seen but I’m now bordering on severe and it’s worrying as the relapses are more to do with damaging my spinal cord. My nurse was trying to get me on gilenya but after seeing a consultant at Salford gilenya was not even mentioned. It looks like its tysarbi for me, I’ve already had my rebif dose upped to 44. I’m still a bit apprehensive but after speaking to my nurse I feel a bit better about it. I can go on tysarbi for 18 months then drop back to rebif, have tests every 6 months for jc and am now waiting for MRI with dye to see if I’m suitable for it. So here goes…

I take the view that you go with the lowest-risk thing that works. For me, once my MS upped its game after a long time on Avonex, that meant Tysabri. It’s never nice to be told that your MS has been promoted to severe, but so it goes. I’m just glad there was another, stronger, option to reach for when the first line DMDs were no longer doing the job. Sounds like you are getting a pretty clear steer from your doc about what they think you need. I hope it all goes OK for you.

Alison

x

Hi Dave

I didn’t fit criteria for Tysabri as I have probably had MS too long, the good thing about Betaferon is they keep you on it even though you are technically S/Progressive as like me, you can still have relapses. I have found that since being on it. My relapses are very much milder but it doesn’t seem to help with progression of the disease which I believe Tysabri does.

Wendy x

Anon 07 Aug 2015, I agree with Alison. Your post was brought to my notice but I think because I had read the original thread. Nevertheless, to reply to your post, since Gilenya has failed you it seems time to move on to something more effective. I’ve read a lot of good things about Tysabri, Alison is a good example but other posts on here and info on the Barts MS blog. Tysabri is scary but not really to me with good monitoring which I feel pretty certain you would get - talk to your neuro/nurse. The same Barts MS blog has a lot of information on the risks too. I would worry with NO medication. Leaving MS unchecked - the Gilenya is likely to have been some help but not enough to stop the relapses.

Many Thanks to alison100 and Vithfari xx Your feedback helps xx Not sure how my post ended up on an old thread!

You can tell I am new to the forum!

1 Like

Am I the only person in the world who has been on Tysabri and deteriorated big time? Four years ago, when I was on no DMT and walking with one stick, my consultant said “if we do nothing, in five years you’ll be using two sticks, and in ten years you’ll be in a wheelchair. So we’re going to do something.” The something was Tysabri, which I started in late September 2011.

But, ha ha, two years later, I was using two sticks and now I can only walk very short distances and use a wheelchair or scooter when I’m outside my home. My bladder control is much better than it was four years ago, however, and when I had Trigeminal Neuralgia in May, it only lasted a couple of months.

I am so sorry it hasn’t done the job for you, Sewingchick.

We all hope for the best with a new medication, particularly one we are told is top-of-the-range and which comes with risks that we are prepared to accept in return for a good result. I am sorry that things have not gone as you had hoped.

Alison