AAN recommends not prescribing ABCRs for progressive MS

[agate]

So far as I know, the prescribing information for the ABCR drugs still states that they are only for the treatment of RRMS--though as I recall Betaseron might have been also listed for progressive forms of MS.

But quite a few neurologists, including a couple I have had, have been prescribing these drugs regardless of the type of MS you have, maybe on the theory that doing something is better than doing nothing. Now they're being advised not to.

Anyway, the American Academy of Neurology (AAN) has come out with 5 recommendations for neurologists, including a recommendation not to
prescribe the ABCR drugs for progressive MS.



An abstract in PubMed, February 23, 2013, gives information about the American Academy of Neurology (AAN)'s "Top Five Recommendations in the Choosing Wisely campaign promoting high-value neurologic medicine and physician-patient communication." The AAN published these recommendations recently in collaboration with the American Board of Internal Medicine Foundation and Consumer Reports.

"A Choosing Wisely Working Group of 10 AAN members was formed to oversee the process and craft the evidence-based recommendations. AAN members were solicited for recommendations, the recommendations were sent out for external review, and the Working Group members (article authors) used a modified Delphi process to select their Top Five Recommendations."

Recommendation #4 states:

Recommendation 4: Don't prescribe interferon-β or glatiramer acetate to patients with disability from progressive, nonrelapsing forms of multiple sclerosis.

The abstract can be seen Only registered and activated users can see links., Click Here To Register....

More information on these recommendations is Only registered and activated users can see links., Click Here To Register....

[stillstANNding]

This is interesting. I am surprised but need to read the whole thing to see if they had a "why.?" My stance would be "why not?"

Thanks for this Agate- I'll read it soon.
ANN

[Virginia]

Like Ann, my question is "why not". Also, while I may be secondary progressive, before I was put on a DMD I had a number of bouts with optic neuritis. I have not had this since and thank God all the time for that. So as long as my Neuro will let me have Rebif (as much as I hate taking it) I will continue, if for no other reason than I believe that it has saved my eysight so far.

[agate]

This is the explanation that is given:

Interferon-beta and glatiramer acetate do not prevent the development of permanent disability in progressive forms of multiple sclerosis. These medications increase costs and have frequent side effects that may adversely affect quality of life.

My guess is that they're bending over backwards to make everything "cost effective" now that the skyrocketing cost of medical care is being discussed so often.

If you're willing to put up with the reduced quality of life that you might have as a result of the side effects, I have a pretty good idea that the neuros will go right on prescribing the ABCR drugs for anyone with MS who wants them.

[jendie]

I'm grouchy about this topic because neuros decide that patients should take things because they should be on SOMETHING.... my neuro pushed meds that I am allergic to because of this thought process.

[agate]

I'm grouchy about this topic because neuros decide that patients should take things because they should be on SOMETHING.... my neuro pushed meds that I am allergic to because of this thought process.

How nice to see a photo of you!

I agree that neuros are too eager to prescribe but I've heard that this is a problem doctors have. They almost feel like failures (I guess) unless you can leave the doctor's office with a prescription in hand. They feel as if they "ought" to have something to offer you.

I wish they'd rethink that idea.

[markaf]

I was SPMS at DX's 12/20/2003, I'm male and 60 yrs old now and damn tierd of sticking myself every day! my wife thinks that going off is a big risk, but why do it if it don't help. i see my MS Doc 4/1 i will ask him about this.mark

[agate]

Hi markaf and WELCOME to this place! This MS board has existed longer than any MS board that I know of, and on the Internet that's an achievement, I think.

Neuros seem to go by the MRIs. So if you haven't had an MRI recently, when you mention going off the DMD, you'll probably find yourself getting an MRI--to see how you've been doing on the DMD.

Many neuros will probably still want their SPMS patients on a DMD in case it might do some good. There's some evidence that a DMD just might help to slow progression even in people with SPMS.

You hope things won't get worse, and if they do but you're not on one of the DMDs, you might always wonder if your MS wouldn't have progressed so fast if you'd gone with the DMD. So you take the DMD just so you'll never feel that way. You'll know that if you get worse, at least you've been doing what you can.

--Except that there's also some slight evidence that in some people with progressive MS, taking a DMD can actually make the MS worse.

So what it comes down to is that it's your choice. If you don't mind taking the DMD and it's not hurting your financial situation or anything else that much, you could consider just staying with it for whatever good it might be doing.

Good luck with the doctor. I'd be interested in knowing how this turns out.

[markaf]

hello agate, i've been a member of BT a long time(fall of 2002). i miss the old days of BT,my MS took a bad turn downward about 3 years ago,but thanks to my wife i'm OK.mark.f

[Jeanie Z]

:) I have now been on a 4.5 mg capsule of LDN nightly for 14 years. I have had NO new symptoms and NO further progression since going on the LDN.

I was on Betaseron for over 5 years and on Avonex for 2 years and continued to go downhill on both. I had to hunt for a doctor willing to prescribe LDN after my doctor retired but I found one and have been able to stay stable with LDN.

The site for info on LDN is Only registered and activated users can see links., Click Here To Register... and click on the MS link. I printed that out and took it to my doctor and because it is such a small dose he let me try it. You need a RX and you have to have it made by a compounding pharmacy.

I wish I had found LDN before I was in a scooter, but I am happy to be staying where I am. I have had MS since I was 18 but it was not diagnosed for years. I am now 71 and I changed to secondary progressive in 1992.

With my Mother (12/17/12) and my husband (2/1/13) dying within 5 weeks of each other I am going through a lot of paperwork, sorting, etc. and I doubt that I could handle all of it as well as I am without the LDN.

Good luck with your doctors appointment. Jeanie :)

[SalpalSally]

Jeanie, are you sure it's only 14 years. I went on LDN in 2003
and it will be 10 years in April. I thought you had been on it
for 7 yrs or more, when I started.

Like you, I was SPMS when I started LDN and, like you, I
haven't progressed since then either. If I get sick, I heal
faster too, and just have an all over feeling of well being.

[Jeanie Z]

:) Sally you are right I think I started LDN in 1995 which would be 18 years on it. It works for me and I will never quit taking it. My memory is fuzzy right now with so many things on my to do list.

I printed out the info at the MS link at Only registered and activated users can see links., Click Here To Register... and took it to the doctor and he said since it was such a low dose he'd write the RX. I fax the RX to Only registered and activated users can see links., Click Here To Register... and they ship overnight. I get 90 days worth at a time to save on shipping charges. Jeanie :)