Anyone NOT on DMDS, as a choice?

[readingteacher]

I've had such a difficult time with: a few relapses in the past two years while on Copaxone, insurance denying me the chance to try Gilenya, and (now) constantly feeling sick while taking Betaseron (for the past few months). I decided that, not only do I NOT want to be on Betaseron any longer, I don't want to be on ANY DMDs for at least awhile.

I don't see my neuro again until October (thought it was September, but I saw the reminder online today that it was October). I left a message for him, today, that I was stopping Betaseron because the side effects were just too much for me. The nurse on the phone asked me if I wanted to ask him to put me on something else. I responded that I just wanted to NOT be on any DMDs, at least until my next appointment with him. I felt like my body needed a break.

I've seen, at times, that some of you on the message boards have, at the bottom of your posts, a remark that you do not take any DMDs. Just wondering how well you have been coping without taking anything, other than meds for sx?

[SNOOPY]

Hi readingteacher,

I don't use a DMD...by choice

Just wondering how well you have been coping without taking anything, other than meds for sx?

I am on one prescribed medication and it was not prescribed for MS although I can take it to help with certain MS symptoms (leg pain). I rarely use the medication for this as I tend to just deal with it.

Exercise has helped (me) quite a bit in dealing with this disease and symptoms.

If you chose not to use a DMD please give though to this question:

If you have an exacerbation or progression will you have regrets about NOT using a DMD? If you can go DMD free and be okay with whatever the disease does...or doesn't do then don't use a DMD.

If, on the other hand, you will second guess not using a DMD the you probably should keep using one.

You can always re-start a DMD at anytime.

[readingteacher]

Thanks, Snoopy!
I truly appreciate your input.

[laura g]

I made a choice not to take any of the DMD medications once I was diagnosed with secondary progressive . I can honestly say it was the right choice for me and I am only on Baclofen to help with spasticity .
When I was on Avonex , I lost a day due to severe side effects and couldn't tolerate Copaxone . I just didn't want to keep trying different meds so I stopped and have had no regrets .

[BigA]

I did want to suggest Avonex exactly because you only lose one day. Actually, it was two I the beginning, Saturday and some of Sunday, but it got better in a few months. However, I had bad side effects for 2 years - but just on that one dedicated day. It sucks, but it's a little insurance and does get better eventually. Maybe faster than my 2 years.

[Bob698]

Just understand that you have to build a tolerance to Beta (as with the other injectables). It kicked my behind for about four months before we signed a truce.

I had a really cool nurse explain to me that it might hit me hard but it was important to stick with it as long as I could.

There were many times I wanted to quit but I'm glad I didn't. I've had really good results with Beta.

Just stopping DMDs entirely leaves you open to further nerve damage and progression, so please weigh the possibilities carefully.

[SNOOPY]

Just stopping DMDs entirely leaves you open to further nerve damage and progression,

Unfortunately, nerve damage and progression can happen even if you use a DMD.

There are no guarantees in this world of MS, regardless if you use or don't use a DMD.

To use or not to use a DMD --- roll the dice, it's a crapshoot.

[abeautifullife]

You have tried Copaxone, no dice, insurance said no to Gilenya, and then have tried Beta with terrible side effects. Can you apply for an oral med again through insurance? My insurance rejected my request for Tec because I hadn't tried Copaxone and an interferon yet and shown that they did not work. It seems like the injectables aren't working for you - can you appeal to insurance again to get the company to cover an oral form now?

[22cyclist]

I would also like to suggest that you try Tysabri if you are JCV-. It is easily tolerated, no side effects, and it actually makes you feel better. I have gained back some of my losses after starting Ty. I am less dizzy, have better balance, and can walk better. It also has an 80% efficacy as opposed to Tecfidera which has a 50%, and Copaxone which has a 30%. It is worth a thought.

Good luck with whatever you decide!

Lisa
Moderation Team

[gbash]

For me, there's not enough benefit to the DMDs to get me to put up the shots, side effects, and cost. At best, they only slightly slow down the progression.

[Bob698]

gbash, honestly- I had a lot of progression and nerve damage before I started my DMD. I've had no signs of progression or further damage since I started taking it.

We're all different but the meds out there are about all we have to really fight the disease.

MS has already taken enough from me. I'm not in a hurry to give it another chance.

[BigA]

Unfortunately, nerve damage and progression can happen even if you use a DMD.

There are no guarantees in this world of MS, regardless if you use or don't use a DMD.

To use or not to use a DMD --- roll the dice, it's a crapshoot.

Have I understood you correctly? While I agree that the DMDs may or may not work, I don't agree that since there are no guarantees, it's the same as not taking them. It's like saying that you can still die in a car accident not wearing a seat belt, so it's ok not to wear one.

[BigA]

I would also like to suggest that you try Tysabri if you are JCV-. It is easily tolerated, no side effects, and it actually makes you feel better. I have gained back some of my losses after starting Ty. I am less dizzy, have better balance, and can walk better. It also has an 80% efficacy as opposed to Tecfidera which has a 50%, and Copaxone which has a 30%. It is worth a thought.

Good luck with whatever you decide!

Lisa
Moderation Team

The percentages you mention are only a reduction of relapses against placebo in their individual trials. It does not speak to disease progression, although it is likely that it effects progression.

The switch to Tysabri should not be taken lightly and the amount of disease activity considered against the risks of tysabri, and the possible rebound effect when forced to stop.

I'm happy I started a DMD. Disease activity in the first years can have an impact much later in life. I recommend finding something, with Tysabri as a last resort.

[Bob698]

Just one more thing for readingteacher.

Two months on Beta is a very short time to understand if its working or not. It usually takes six to eight months of doing your shots every other day to figure out if the med is right for you. You should build a tolerance to Beta before this period is over and the shots won't be as bad as they are now.

I know it stinks right now, believe me. I wouldn't wish this stuff on my worst enemy but I also know it works for me. It just takes time.

You could try working on how you premedicate before your shot to cut down on the side effects. I'm five years into Beta and I still take 400 mG of Advil an hour and a half before I do my shot.

[22cyclist]

Thanks BigA, I should have clarified. Ty is not the big bad monster people make it out to be. As long as you know your JCV status, and your JCV index number you can make an informed decision whether or not to stay on Ty. There are medications that they can use to treat the rebound effect. The benefits are that in most cases you have little to no relapses, little to no changes on your MRIs, you have more energy, and little to no side effects from the once per month infusions.

I am not at all forgetting about the risks associated with Ty because they are big (PML and Death), however, if you know your risks and can manage them, its better. Ty is definitely not for everyone. BigA I understand your reluctance to recommend it to anyone except as a last resort. I was like that for a while until I was on it for a year. Now I think a little differently. I guess it is an individual thing and a personal decision like all DMDs are.

Lisa
Moderation Team