Criteria for Starting DMDs

[Sarahsmom46]

Dear Dr. Kantor,

What criteria do you generally use when deciding whether to put a patient who is not "classic MS" on a DMD?  This is probably an individual decision depending on the doctor and on the particulars of the patient, but is there a general rule of thumb when you are making that decision?   Thanks.

Julie

[Dr. Daniel Kantor, MD]

I strongly believe that every single MS patient should be on some sort of DMD, they should know which one, why and what the alternatives are.

There is great risk in not treating MS and although some people may do OK without them, it is currently impossible to predict whom they are.

[Dr. Daniel Kantor, MD]

You make an excellent point.

The 4 injectable and 2 IV DMDs are FDA approved for the treatment of RRMS.

While there have been many research trials for the treatment of SPMS and PPMS, unfortunately progressive forms of MS are very difficult to treat because they are not very inflammatory.

I speak for myself when I say that we try to use off-label medications, such as immunosuppressants and anti-cancer drugs, as well as LDN (low dose naltrexone).

Also, I want yout to know that your doctors fight for you and yell out forthe development of DMDs for the treatment of progressive MS. While there are many newer medications being developed for RRMS, there are only a few being developed for SPMS and PPMS.

I still believe, however, that you should be aware of your treatment options.

[Irene5353]

What if you had been put on Copaxone and had taken it for 6 or 7 years,  you went off it because of skin reactions and then tried to resume it but because you had a new doctor, after your doctor had retired, in the same clinic he wanted to hold off with a prescription for the DMD that had cut flares in half for so many years.  Then 7 months later when you called due to another flare in the same year, the doctor told  you he did not think you had MS and you should not be on DMD.  I used to work in a research lab and there is nothing very scientific about this method.  I have had many lesions sited and signs but the last MRI was clear after the lesions that were on my MRI for so many years disappeared.  Now I am really tired of even thinking of neurologists but I do need to care for myself.  I am really, really puzzled and I think that is very normal in this circumstance.  Is it common for neurologists to differ so radically from one another?

[doublevision1]

When you say that you think every single MS patient should be on some sort of DMD, do you mean to include those with SPMS and PPMS?  

If so which DMD's should be used in such cases?  I am unclear as to how such patients are typically treated.

[Sarahsmom46]

You make several good points and thanks for sharing your experience.  I can't imagine regretting anything more than for a doctor to label me as "mild" or benign MS and hold off using DMDs. As Dr. K. said there is no way of knowing if or for how long symptoms will remain mild.  Personally, I would be very upset if in one year of waiting and watching that I get much worse and then have a doctor say "well, maybe we should have started you on them last year".  You can't get that time back that DMDs could have helped.  

Thanks again for sharing your experience.  You have quite a history with this disease and that helps us newbies a lot.  

Julie

[jed9999]

Hi--I'm the one new around here who has had MS 36 years and have not been treated with DMD's. BUT--I sort of slipped into not taking one because I had already had MS about 15-20 years before they became available. And thoise years were manageable with sensory symptoms alone for the most part. I do think if at all possible everyone with MS (along with their doctor) choose one that is palatable and "get right to it" after perhaos waiting and seeing what the first 6mos to a year brings, oif inital symptoms are very slight.  It only makes sense to me to protect ourselves for the future.

That said, I am one who especially hates the "Benign" diagnosis----there is very very little about MS which is benign! Add it all up and I doubt if it EVER is Benign. MS is a hideous disease which has the potential to affect evevy single aspect of our lives.
Take away a neuro's judgment, concentration, ability to speak and walk, sex life, energy levels, composure and self-esteem and ask them is it's benign for them!!!

My former neuro called my 36 year old MS Benign because I could walk (but not far and not well.) She said I didn't have enough going on to make it less than Benign. Now a few months later after a long lasting infection, I can barely stagger from room to room at times and always use a cane. My, how categories can change when you're not having fun. What's an injection when it can even potentially protect us from tragedy? (oops-it's bedtime and I hate to go to bed agitated. lol) Cheers! Jane

[Lulu54]

The diagnosis of "mild" and "benign" MS has all of us on the forum aggitated because it seems that there is no way of really knowing that the disease has stayed in that form until our death.  Yet doctors are using those labels, especially in the UK.

[Dr. Daniel Kantor, MD]

Every probable MS is different because there is a different probability.

I don't know how you predict "mild" MS -- so how do you know if it will stay mild without a DMD?

[Eyesnlegs]

and 'mild MS' should that be treated too?

Pat

[Sarahsmom46]

What if your patient was identified as a "probable" MS?  Would you treat a probable patient with DMD?

Julie