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DMD confused
Hi,
I've just had my follow up appointment with my consultant after second MRI, two of the lesions clearing up but a few more in place.
My consultant has said that he is now able to prescribe a DMD. After explaining about them and telling me the ones he's recommending I have & having bloods done he sent me home with more information to read and a decision to make........which one to choose?
The two main he has said to look at are Tysabri & Lemtrada. He said rather than go low and work up, to go straight for Hi.
How do you, firstly, decide whether to go on them, then thinking what happens if i don't want to go on them, to deciding, if I do, which one to choose, I've read a lot of the information this morning and to be honest I'm a little scared. He's advised me to take a bit of time to think about it.
Because I'm still new to all this, it's more about not knowing what to do & being confused.
I would be so grateful for any advice.
Hope all are well.
T.
I've just had my follow up appointment with my consultant after second MRI, two of the lesions clearing up but a few more in place.
My consultant has said that he is now able to prescribe a DMD. After explaining about them and telling me the ones he's recommending I have & having bloods done he sent me home with more information to read and a decision to make........which one to choose?
The two main he has said to look at are Tysabri & Lemtrada. He said rather than go low and work up, to go straight for Hi.
How do you, firstly, decide whether to go on them, then thinking what happens if i don't want to go on them, to deciding, if I do, which one to choose, I've read a lot of the information this morning and to be honest I'm a little scared. He's advised me to take a bit of time to think about it.
Because I'm still new to all this, it's more about not knowing what to do & being confused.
I would be so grateful for any advice.
Hope all are well.
T.
I understand the confusion! I just posted a question myself about DMD's. My neuro was adamant that i should try Tecfidera (which i did but couldn't last out the side effects) so now we'll try Gilenya, these are both tablet forms. I feel confused about it all but i don't feel i need to choose a drug as my neuro seems confident with his recommendations so i feel confident to follow them.
The first year is such a roller coaster, as soon as you think your over the first hump another one comes out of nowhere. I hope you find some clarity about which one to take, I'm afraid i don't know much about the injectables (although i will if i can't handle these tablets too). Best of luck.
Jane x
The first year is such a roller coaster, as soon as you think your over the first hump another one comes out of nowhere. I hope you find some clarity about which one to take, I'm afraid i don't know much about the injectables (although i will if i can't handle these tablets too). Best of luck.
Jane x
1 Comments
Hi Jane,
Thank you so much, it is a scary thing to be dealing with but on the flip side it's hopefully going to help, that's what I've got to keep thinking as I choose now I suppose.
My neurologist has put two main of the high ones on the table but he has favoured one of them more, but that is if I go straight for the high. The only one he didn't favour for me was the low option.
At the moment I'm very much just getting to grips with the side effects of the first meds.
I hope you are well.
Take care. T
Thank you so much, it is a scary thing to be dealing with but on the flip side it's hopefully going to help, that's what I've got to keep thinking as I choose now I suppose.
My neurologist has put two main of the high ones on the table but he has favoured one of them more, but that is if I go straight for the high. The only one he didn't favour for me was the low option.
At the moment I'm very much just getting to grips with the side effects of the first meds.
I hope you are well.
Take care. T
All the information is scary. You have to remember when they do clinical trials they have to list every illness a participant gets even if it had nothing to do with the drugs. It is all benefit:risk ratio.
The second thing to understand is slowing progression is key with MS. You can have progression with or with out symptoms. You can't wait until you have damage and then get on a DMD and go back to the way you were before the damage.
They did not have DMDs when I got MS in the 1960's. All of my MS symptoms are permanent, I got so many permanent MS Symptoms as a child that I do not know what is abnormal. To me double vision is normal.
I am now going on my 6th regiment of chemo. Most of the chemos have not had that bad of side effects as were listed. No body in there right mind would sign up for these side effects. They are worse than MS drugs but then my cancer is worse in some ways than MS.
Also choosing a DMD says this is a really serious illness I am facing. That has a lot to do with DMDs being scary. It is no longer theoretical..
Alex
The second thing to understand is slowing progression is key with MS. You can have progression with or with out symptoms. You can't wait until you have damage and then get on a DMD and go back to the way you were before the damage.
They did not have DMDs when I got MS in the 1960's. All of my MS symptoms are permanent, I got so many permanent MS Symptoms as a child that I do not know what is abnormal. To me double vision is normal.
I am now going on my 6th regiment of chemo. Most of the chemos have not had that bad of side effects as were listed. No body in there right mind would sign up for these side effects. They are worse than MS drugs but then my cancer is worse in some ways than MS.
Also choosing a DMD says this is a really serious illness I am facing. That has a lot to do with DMDs being scary. It is no longer theoretical..
Alex
1 Comments
Hi Alex,
Thank you for the information & advice, my first thought after reading a little about what my nuerologist offered was 'oh, this is scary' it's when you have all the possible things that you could deal with.... My neurologist was so lovely explaining everything and he's also advised me to take a week or so to make a decision.
I can only imagine what you are going through, dad went through chemo & the list of side effects are scary! I do hope you are ok Alex,
Take care. T
Thank you for the information & advice, my first thought after reading a little about what my nuerologist offered was 'oh, this is scary' it's when you have all the possible things that you could deal with.... My neurologist was so lovely explaining everything and he's also advised me to take a week or so to make a decision.
I can only imagine what you are going through, dad went through chemo & the list of side effects are scary! I do hope you are ok Alex,
Take care. T
Impressive that your neuro is willing to push for the most effective DMDs for you! Mine really didn't give an opinion. It was 100% up to me (like I have any clue about these things....).
Good luck with your decision. Let us know what you decide & how it is going for you.
Cheryl
Good luck with your decision. Let us know what you decide & how it is going for you.
Cheryl
1 Comments
Thank you Cheryl.
my neurologist did go through the low, medium and hi's, took out the low's straight away then as much as the medium were still on the table he favoured offering me the hi's. (I'm the same, not having a clue.) Big decision making now. Hopefully I'll make the right decision. Hope you are well. Take care. T
my neurologist did go through the low, medium and hi's, took out the low's straight away then as much as the medium were still on the table he favoured offering me the hi's. (I'm the same, not having a clue.) Big decision making now. Hopefully I'll make the right decision. Hope you are well. Take care. T
Hi, Thank you both so much for the information & advice.
I've made phone call today to arrange meeting with my MS specialist nurse to go through any concerns I have.
Lots of reading & gathering information for me!
Thankyou both again, much appreciated. Take care
T
I've made phone call today to arrange meeting with my MS specialist nurse to go through any concerns I have.
Lots of reading & gathering information for me!
Thankyou both again, much appreciated. Take care
T
As Immie mentioned, both Lemtrada and Tysabri are monoclonal antibodies (MAB). Both are delivered via IV infusion. Tysabri is given monthly. Lemtrada is given over 5 consecutive days and then not for another year. I get a 3rd MAB called Rituxan. It’s given via IV every 6-12 months.
All 3 of these drugs are a step up from the typical first DMDs like Copaxone, Ribif, Avonex and Betaseron. Rixtuxan may be two steps up. This is what your doc may mean when it’s best to start low and leave room to move high. I started on Tysabri. After 20 monthly infusions it stopped working so I moved up to Rituxan. That was 2 years ago and the Rituxan is still working.
None of the DMDs are without risk. In some cases the risk is serious. The frequency of administration is another factor to consider. The deciding factor may be efficacy. These are all things that you should talk about with your doc and then make the choice that works best for you.
Kyle
All 3 of these drugs are a step up from the typical first DMDs like Copaxone, Ribif, Avonex and Betaseron. Rixtuxan may be two steps up. This is what your doc may mean when it’s best to start low and leave room to move high. I started on Tysabri. After 20 monthly infusions it stopped working so I moved up to Rituxan. That was 2 years ago and the Rituxan is still working.
None of the DMDs are without risk. In some cases the risk is serious. The frequency of administration is another factor to consider. The deciding factor may be efficacy. These are all things that you should talk about with your doc and then make the choice that works best for you.
Kyle
They're both monoclonal antibodies, which is a class of drugs both Kyle (kwarendorf) and I are on (though we're on ones you've not listed here). This is the newer, more effective generation of drugs to modify MS. It's my understanding that both are given via monthly infusion? In these senses, they're fairly similar in terms of how they work and how you take them.
If I were in your shoes, the thing I'd be thinking about is published safety and efficacy data; compare and contrast. I'd likely go for Tysabri simply because it's been on the market for a longer time. There's likely more awareness of risks and there may be some more longitudinal data coming out. But this is just me teasing out what would be going through my head in your situation.
It's a tough, important decision which DMDs to take. It's definitely mentally exhausting. But on the upside, many many people can only wish their neurologists are on board for more aggressive treatments from day one.
If I were in your shoes, the thing I'd be thinking about is published safety and efficacy data; compare and contrast. I'd likely go for Tysabri simply because it's been on the market for a longer time. There's likely more awareness of risks and there may be some more longitudinal data coming out. But this is just me teasing out what would be going through my head in your situation.
It's a tough, important decision which DMDs to take. It's definitely mentally exhausting. But on the upside, many many people can only wish their neurologists are on board for more aggressive treatments from day one.
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