Tecfidera and PPMS

[J-Bo]

Hi all,

I was diagnosed with PPMS in August of last year. My MS doctor has convinced me to try Tecfidera and Ampyra. I haven’t gotten official approval from insurance yet for either of these drugs and I understand that neither are approved for the type of MS that I have, so it might be an uphill battle.

Anyway, here is what I’m wondering at this point: what is the evidence that neither of these drugs is effective for PPMS? Does clinical data exist that proves they don’t? Or is it just that they’ve never tested them for PPMS, so there’s no evidence that they do?

I’ve searched high and low for an answer, but have never found one. I’m hesitant to ask my doctor because I feel like this is already on a wink-wink-nod-nod basis, and don’t want to force him into acknowledging that he’s prescribing medications that aren’t approved for this use.

Any enlightenment on this would be much appreciated!

[Kimba22]

Hi J-Bo,

There have been no studies conducted (yet) showing possible effectiveness of Tecfidera for PPMS. So, basically, no one knows for sure. None of the current DMT's (Disease Modifying Therapies) have been proven effective for PPMS thus far. But, there is a current study testing the effectiveness of Gilenya for PPMS.

Ampyra is a symptom management drug, which can be helpful for any form of MS. Unfortunately, it doesn't help everyone. You'll only know if it helps you by trying it. I hope it does!

Best wishes,

[J-Bo]

Thanks, Kimba. From what you're saying, it sounds like I'm not wasting my time trying these. And it's not like I'm doing anything else useful to help myself at the moment so why not? One thing at a time, though--have to see what happens with insurance. If I really had to I could swing the Ampyra cost, but not the Tecfidera.

[whatismyname]

i'm ppms. have been taking aminopyradine (ampyra) since 2006. you can get it from compound pharmacies for $40-50 delivered and it is the same thing as ampyra if that helps your costs any. i believe it helps me with overall strength/coordination.

am likely about to start tec also per my neuros advice, but i am not expecting much.

[J-Bo]

Thanks whatis

The free trial supply came Friday, and I started it yesterday. I don't expect it to do anything instantly, but yesterday my legs felt heavier than ever but that's just one day. Certainly I need to at least give it a few weeks.

The Tecfidera was approved with $45 copy (whew!) and is due for delivery tomorrow. But I think I might wait until next weekend to start that so that I have a clearer idea of which med is causing which effects.

[misslux]

I'm also PPMS and on 4-aminopyridine andit definitely helps me with movement and a little with fatigue and spasticity. I'm not on any DMTs.

[whatismyname]

hi j-bo. do you have an update on your experience w/ tec and ampyra? i'm especially curious about the tec as i never did start it due to having a sensitive gut. i've heard that stomach issues are a problem w/ tec and i need to avoid that. did you start it? how's it going? thanks!

[J-Bo]

Hi whatismyname,

I did try if for about six or seven months. It didn't give me any stomach problems, but I definitely had the flushing. Usually about twice a day, I'd feel like my face had a bad sunburn for a few minutes. So that wasn't too terrible. But my WBC went way down, and when I was facing a hip replacement last October, I was afraid to keep taking it. I haven't gone back on it because I felt like my MS was getting worse even when I was on it.

Right now I'm trying to get into a trial for ibudilast for PPMS (https://clinicaltrials.gov/ct2/show/...udilast&rank=6) but so far, that's proven to be a challenging effort. My hometown health system is seemingly refusing to send my records to Cleveland Clinic, even after six or seven requests.

[jreagan70]

My hometown health system is seemingly refusing to send my records to Cleveland Clinic, even after six or seven requests.

Every state medical board has statutes requiring that medical records be sent/released on a timely basis. Perhaps a phone call to your state medical board could speed things up.