Does anyone who has PPMS take any type of DMD's?

[grannyhotwheels]

I'm just wondering if any of you who have been diagnosed with PPMS take any of the DMD's?  I've actually talked to a couple of people who do take DMD's... Neither one of them can really tell a difference but it hasn't been a year since they started their meds so enough time may have not went by yet...

My neuro has actually talked to me about this and he said that it's my decision... but that he probably wouldn't do it... Now I'm confused... Could this help me in any way at all?  I know it's to help prevent relapses but what could it do for someone who doesn't get relapses?  Let me know what you think about this...

Thank you and my prayers,
Carol

[jcrain9663]

You asked the 64-million dollar question!

I have searched, and have been unable to find, concrete evidence that taking a DMD alters the disease course for us with PPMS.  The hope is that perhaps Gilenya might prove to work for PPMS, but it will be a while, at least another couple of years, before the evidence is reported in the literature.  

So for now, it's left to the individual patient to decide which way to jump.  Some swear that their DMD of choice definitely retards progression, but I'm on the fence - for now.

[HVAC]

It was left up to me and it was hard choice. I was on Copaxone when they rediagnosed me with PPMS. I figured I have had MS for over forty years and the CRABS have all proven to work in one third of those newly diagnosed with RRMS. That takes my statistics way down. The CRABS and Tysabri faile in trials for PPMS. No drug stops progression, they can only hopefully slow it. They work on inflammation which is what causes relapse in RRMS. PPMS is not supposed to have as much inflammation. I think there must be some. I have never had an attack or relapse since the first episode which landed me in the hospital in 1965. If I were going to be on one I would be on a heavy hitter. The CRABS are not heavy hitters, they are safer. Tysabri does not seem to work well with PPMS. I would go on chemo drug before Gilenya. Gileyna has not been out long enough for me. The chemo drugs were used before the CRABs.

It was a bit scary to make the choice to go with out a DMD. I am progressing slowly. I guess we all have to decide for ourselves. May be you will be of the percentage a drug helps who knows.

Alex

[Lulu54]

Carol, I'm not PPMS but have heard my msologist talk publicly about this.  He says even folks with PPMS should be given a DMD choice - that it only makes sense to throw anything and everything at this MonSter to slow it down.

As for the people who you mention, we don't know where they would be if they hadn't taken the drugs.  This is such a confusing and confounding disease.

best,
Lulu

[anon07072023]

I don't think there are very many PPMSers on here.  
If I am a PPMSer...then I'd probably want to take a DMD if it was offered. However, I think I'd stick to the ones that don't come with the flu-like symptoms. Why make your life more miserable with added symptoms?

-Kelly

[willow2011]

I am newly diagnosed PPMS and have been on Avonex 4 months now.  My neurologist says the DMDs have not been thoroughly tested for PPMS but may still be effective.  Take note that for ins to pay for the drugs your chart must read RRMS.

[grannyhotwheels]

Thank you all so much for your replies on this subject... I feel like I should at least give it a try right?  Who knows I possibly could be in that small percentage that it would help... I'm not usually the lucky one but I could at least pretend my luck had changed...lol

Which one has the least amount of side effects?  I can't really justify adding more problems on top of everything else I deal with on a daily basis... Also if there are not many side effects does that mean it's the least in strength... You know, kinda no pain no gain kinda thing?  

My family is all for me trying one of the DMD's... They want me to try anything that has the possibility of helping me and I do understand where they are coming from... I'm going to talk with my doctor a little more about it before making a definite decision...

Thank you and I'll be praying,

Carol

[anon07072023]

The one with the least amount of symptoms I believe is Copaxone. With that said, you may be right - it also may not be one of the big guns.

[maestro1959]

Hi Carol,

I was diagnosed with PPMS from the beginning.  The neurologist I was seeing only placed me on Zanaflex for spasticity.  He never brought the subject of meds up.

I currently waiting to get into the MS Clinic at Detroit Medical Center.  I am told it is ranked third in the country for its quality in treatment of MS.  So, I am eager to hear what their recommendations will be.  My thinking is that whatever could potentially be of help should be tried.  I must now wait and see.

I truly hope you find the answers for which you seek.

Most sincerely,
Beth