Aa
Which DMD treatment to use?
I was diagnosed with MS at the beginning of this month and my Neuro wants me to start a DMD treatment as soon as possible. (Not a surprise...) I have currently refused until I am fully off the prednisolone given for a recent optic neuritis attack, and have been 'clean' for a month or so. (This is so I can tell exactly which drug I am getting a reaction to when I start taking it!)
I also have(had) Sarcoidosis which was diagnosed from a biopsy lung sample in 2006, although the main symptom has always only been ongoing vision problems in my left eye with very occaisional flare-ups in the right eye.
So I have until mid-October to make a decision on which DMD to start and would like some views on your experiences with the drugs. The Neuro is not keen on Avonex (and to tell the truth, I am not keen on the idea of injecting into muscle) but I think I will be fine with the other three - Copaxone, Rebif and Betaseron (called Betaferon here in OZ).
Looking forward to seeing your opinions.
Thanks
I also have(had) Sarcoidosis which was diagnosed from a biopsy lung sample in 2006, although the main symptom has always only been ongoing vision problems in my left eye with very occaisional flare-ups in the right eye.
So I have until mid-October to make a decision on which DMD to start and would like some views on your experiences with the drugs. The Neuro is not keen on Avonex (and to tell the truth, I am not keen on the idea of injecting into muscle) but I think I will be fine with the other three - Copaxone, Rebif and Betaseron (called Betaferon here in OZ).
Looking forward to seeing your opinions.
Thanks
Thank you for all that info. I have bookmarked all those sites and will spend the next couple of weeks going over them all so I can get as much info as possible to make my choice.
Yes Mike, we do have the RebiSmart here in Australia, it's one of the flyers that the Neuro gave me, although she didn't have anything on the drug itself so I emailed the company and they are going to send me some stuff in the mail also.
I kind of like the sound of an autoinjector while I am getting used to the idea of giving myself shots, and until I get reasonalby proficient at it, and it's probably something my son can also learn to use (on me) a little easier and looks a little less 'scary' than actually giving me needles in those hard to reach spots.
Thanks for all of that, I am going off to start on my first article.
Just what one needs of their 50th birthday.... lol
Cheers
Donna
Yes Mike, we do have the RebiSmart here in Australia, it's one of the flyers that the Neuro gave me, although she didn't have anything on the drug itself so I emailed the company and they are going to send me some stuff in the mail also.
I kind of like the sound of an autoinjector while I am getting used to the idea of giving myself shots, and until I get reasonalby proficient at it, and it's probably something my son can also learn to use (on me) a little easier and looks a little less 'scary' than actually giving me needles in those hard to reach spots.
Thanks for all of that, I am going off to start on my first article.
Just what one needs of their 50th birthday.... lol
Cheers
Donna
I use the autoinjector on various settings depending on area I am injecting for my copaxone. Haven't had any real problems.
Good luck.
Julie
Good luck.
Julie
If you want to really think through a lot of the DMD details, I recommend you go to
http://www.msdecisions.org.uk/
It takes some time, but it discusses all the options.
Another recently unveiled site is through MS Active source, put together by the maker of Avonex and Tysabri. It has some very good links about treatment options, although its content is weak in some spots
http://www.msactivesource.com/multiple-sclerosis-treatment.xml
good luck and remember there really is no wrong choice.
Lulu
http://www.msdecisions.org.uk/
It takes some time, but it discusses all the options.
Another recently unveiled site is through MS Active source, put together by the maker of Avonex and Tysabri. It has some very good links about treatment options, although its content is weak in some spots
http://www.msactivesource.com/multiple-sclerosis-treatment.xml
good luck and remember there really is no wrong choice.
Lulu
Hi Donna
I use Rebif and I inject with the 'Rebismart injector'. It's an electronic device that holds 3 shots (one weeks worth) in a cartidge.
I know it's available here in Canada, and in the UK, but I'm not sure if it's approved in Australia yet, so I won't elaborate on it, I'll just say it makes injecting a little easier for me.
Good luck with your decision.
Mike
I use Rebif and I inject with the 'Rebismart injector'. It's an electronic device that holds 3 shots (one weeks worth) in a cartidge.
I know it's available here in Canada, and in the UK, but I'm not sure if it's approved in Australia yet, so I won't elaborate on it, I'll just say it makes injecting a little easier for me.
Good luck with your decision.
Mike
No problem -
Use this link...Once there you will see a box about the middle of the page with a list of the meds. Look below that box and you will see 3 links - Click the 2nd one titled "The Disease Modifying Drugs." It's a pdf, and brings up a great brochure of some comparisons.
Though it won't give you 1st hand patient experiencs like we do, it proves good facts on each.
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
Though it does take time to decide - it's time well spent. Because if you feel confident in your decision, you will feel comfortable and confident in taking the meds and stick to them.
-Shell
Use this link...Once there you will see a box about the middle of the page with a list of the meds. Look below that box and you will see 3 links - Click the 2nd one titled "The Disease Modifying Drugs." It's a pdf, and brings up a great brochure of some comparisons.
Though it won't give you 1st hand patient experiencs like we do, it proves good facts on each.
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx
Though it does take time to decide - it's time well spent. Because if you feel confident in your decision, you will feel comfortable and confident in taking the meds and stick to them.
-Shell
Well that's more real-world info than I had before! Thanks to all of you as it helps to hear what other users like and find convenient.
I am tending towards either Rebif or Copaxane as the Betaferon just seems such a hassle to mix up (I watched the DVD they gave me...) even though it's only taken every second day.
I think I would rather go 3 week/workdays and sleep in on weekends or just go for every day (or night, as some seem to do).
Do any of you use the auto or cartridge injectors or do you prefer the manual approach?
On another note, I saw my opthalmologist again today, and he is very happy that everything has cleared up in both eyes, and we expect the vision to come almost totally normal again after I finish coming off the current prednisolone course. I have noticed it improving over the last week which is good.
He seems to think the sarcoid has cleared up of it's own accord which it is wont to do sometimes, and that is a good thing, although he is reserving the right to say that the eye issues might have been MS-related all along as it has always been lurking in the background as a possiblity.
@shell - yes I would very much like to see/read something on the needle comparisions etc if you can find the link - not that I'm a sook or anything uou realise - just sayin'...... LOL
@Bob - I am definitely going to start the treatment in October when I see my Neuro again and while I knew it wasn't going to happen overnight, it's good to find out just how long it does take before I can expect something to be happening. Since Prednisolone does not agree with me much, I would like to be able to differientiate between the side effects of that and the interferon - at least in the beginning.
Thanks to you all for your warm welcome, I have been reading the forum posts with interest and realise how lucky I am to be mobile and still in control of all of my limbs (at this stage anyway).
Cheers
Donna
I am tending towards either Rebif or Copaxane as the Betaferon just seems such a hassle to mix up (I watched the DVD they gave me...) even though it's only taken every second day.
I think I would rather go 3 week/workdays and sleep in on weekends or just go for every day (or night, as some seem to do).
Do any of you use the auto or cartridge injectors or do you prefer the manual approach?
On another note, I saw my opthalmologist again today, and he is very happy that everything has cleared up in both eyes, and we expect the vision to come almost totally normal again after I finish coming off the current prednisolone course. I have noticed it improving over the last week which is good.
He seems to think the sarcoid has cleared up of it's own accord which it is wont to do sometimes, and that is a good thing, although he is reserving the right to say that the eye issues might have been MS-related all along as it has always been lurking in the background as a possiblity.
@shell - yes I would very much like to see/read something on the needle comparisions etc if you can find the link - not that I'm a sook or anything uou realise - just sayin'...... LOL
@Bob - I am definitely going to start the treatment in October when I see my Neuro again and while I knew it wasn't going to happen overnight, it's good to find out just how long it does take before I can expect something to be happening. Since Prednisolone does not agree with me much, I would like to be able to differientiate between the side effects of that and the interferon - at least in the beginning.
Thanks to you all for your warm welcome, I have been reading the forum posts with interest and realise how lucky I am to be mobile and still in control of all of my limbs (at this stage anyway).
Cheers
Donna
Hello Handymaam!
I used Avonex for the first year and a half after my diagnosis and was then switched to Rebif when it seemed that Avonex wasn't strong enough for me. It did decrease my exacerbation's from once a month to 3 times in a year but my Neuro decided that that was still too frequent.
Basically, Avonex and Rebif is the same substance. Only Rebif is a stronger dosage done more frequently, three times a week instead of once a week, and is subcutaneous rather than intramuscular.
Rebif takes about 6 months "to soak in" as my Neuro would say :) I do well on it and it seems to keep the exacerbation's at bay.
I do find taking the shots trying at times, only because I tend to get sensitive red spots and it can be hard to find areas to administer a shot. But, in all fairness, I don't use all of the possible areas. I mainly use my tummy, buttocks, and hips.
Take care of yourself and good luck with whatever you decide.
Michelle
I used Avonex for the first year and a half after my diagnosis and was then switched to Rebif when it seemed that Avonex wasn't strong enough for me. It did decrease my exacerbation's from once a month to 3 times in a year but my Neuro decided that that was still too frequent.
Basically, Avonex and Rebif is the same substance. Only Rebif is a stronger dosage done more frequently, three times a week instead of once a week, and is subcutaneous rather than intramuscular.
Rebif takes about 6 months "to soak in" as my Neuro would say :) I do well on it and it seems to keep the exacerbation's at bay.
I do find taking the shots trying at times, only because I tend to get sensitive red spots and it can be hard to find areas to administer a shot. But, in all fairness, I don't use all of the possible areas. I mainly use my tummy, buttocks, and hips.
Take care of yourself and good luck with whatever you decide.
Michelle
Hello! Sorry to meet you this way but sounds like you are getting good medical care doing okay.
I am on copaxone. My neuro recommended it due to no side effects and effectiveness. So far, so good with me.
Agee with Lulu, it's a personal preference so take a look at the literature and then take the plunge.
Good luck!
Julie
I am on copaxone. My neuro recommended it due to no side effects and effectiveness. So far, so good with me.
Agee with Lulu, it's a personal preference so take a look at the literature and then take the plunge.
Good luck!
Julie
Welcome again. We are fortunate that there are drugs to tyr with this dx of MS instead of what it was 20 years ago. And now we have lots of choices, which is great. If the first one doesn't do what you need, there are always other options.
As for me, I am on copaxone. Like Bob said it takes a while for it to start working - my experience was about the 6 month mark it made a difference. I
The final choice is really one of personal preference. They all work pretty much the same for effectiveness.
Good luck with your decision,
Lulu
As for me, I am on copaxone. Like Bob said it takes a while for it to start working - my experience was about the 6 month mark it made a difference. I
The final choice is really one of personal preference. They all work pretty much the same for effectiveness.
Good luck with your decision,
Lulu
In the case of DMDs, there is no good reason to wait. DMDs do not function the same way as IVSM. IVSM suppresses the immune system. DMDs "modulate" (tweak) the immune system. If you were to start Copaxone, it will take about 9 months for it to flip your immune system and start suppressing the attack on myelin.
Bob
Bob
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
Hi Handy. I'm sorry for the dx - both of them. I've only seen one other member here w/both sarcoid, and MS. You are so smart to hold off so you'll recognize the side affects.
I was dx'd in 07, and I'm on Rebif. I do well with it. I use to think injection schedule didn't matter much - just as long as I was on the right med to keep MS in check. I do realize the importance of that now - years later. You will tend to be more compliant with your med, if you don't mind the schedule of it. All I knew was that I didn't want to inject every day.
All the interferons come w/potential for side affects. I find those from Rebif to be mild compared to MS. It's a super thin needle, etc. Have you visited the sites yet and looked at the side by sides where needles are concerned? If not, I'm sure I can dig some past discussions up on that for you.
In the end - I don't feel you can go wrong with an of them. So, be sure to include long-term compliance in your decision making. Those avonvex users on the forum have not mentioned much problem w/the intra-m avonex injection- from what I undestand the needle is super thin too - which is helpful.
Wishing you well w/your decision - oh, and one more thing - you can always switch, if you find one is not agreeing well with you - something else I never thought of when I started.
Thanks for joining us - hope you are feeling ok. I'm sure you contend with alot w/the double whammy.
-shell