Treating symptoms

[jeanne]

I'm wondering what everyone with ppms is doing, if anything, to treat or deal with their symptoms.
Since learning that i have ppms i've had neuros tell
me about different drug options for MS and their effectiveness with ppms which i've tried to weigh
the pro's and con's of. I haven't really felt there was anything that i wanted to try.
I would like to hear about how people are treating their symptoms. ampyra? expensive-right? gilenya? trial-right?
Thanks
Jeanne

[mtnwillow]

I am taking Avonex. We know it's not approved for PPMS but my neurologist says it may help. Other than that I treat symptoms, muscle spasms, nausea, tremors, fatigue with Rx meds and supplements. I no longer go to PT but do my exersises (stretches) at home. Like most PPMS's I try to reduce stress, stay cool and eat healthy.

When I eat low fat, meat and dairy free I feel better. But sometimes when I feel very sick I eat what my system allows (milkshakes)

[HopeforDeeDee]

Gone from RRMS to Secondary Progressive

I was dx 8 yrs ago. First started on avonex for about 4 yrs. then went to rebif briefly. Then moved to tysabri for 2 yrs. It wasdiscontinued. Started ampyra with no benefit. Then neurologist said there ewas nothing for me to take so off MS drug for awhile. Took fingolimod but never reached therapeutic dose. It was discontinued. Started tysabri again but it was not helpful. Did a steroid monthly for 3 mos. Now neurologist is recommending cytoxin. I am not sure about it. It is a cancer drug and I am wondering what the side effects will be. Has anyone been on cytoxin to help address this?

HopeforDeeDee

[barba]

cytoxin

I did cytoxin for about 6 months a few yrs back. Did not notice any difference but also did not have any bad side effects other than being somewhat tired the next day or so. The MD was very careful to premedicate to avoid any nauseau and it seemed to work. I understand it has been helpful to those in France so good luck.

[Madison_s_Dad]

PPMS RX's

I started with Avonex for about 3 months then got a new Neuro. He stopped that because he didn't think would do any good. I'm now on Baclophen for spasticity, Low Dose Naltrexone (LDN) to slow the progression, Aminopyridine and Gabapentine for neurological pain. I take Maxalt for cluster headaches. I've also started taking Marijuana to reduce the intense night spasms and for neck and back pain.

I was on various narcotics which were stopped when I started the LDN.

All in all, I would think that things are going ok but the MS clinic i visited 6 weeks ago don't seem to think so. I've got black spot lesions and I guess I'm progressing too quickly. I'll be starting steroids this week then chemo in 3 weeks (for 3 years if all goes well) so we'll see how that goes.

34 - Male - Dx'd September 2010.

[JudySz]

I love the sx medicine cause I do not like t hurt. I take baclofen, neurontin, tramadol, and ampyra. I seem to be bettr. At least I do not feel so bad. I am also on Rebif cuase neuro thinks it might help. If I h ad to give up any drug, it would be the Rebif cause I do not see an miimediate benefit from it. I am finally lon the right dosage of my meds and I feel pretty good.

JudySz

[jeanne]

Thanks for all your feedback! I really appreciate it.
Ampyra kind of interests me but i hear its super expensive.

[empirerecs]

Jeanne -

I'm on Gilenya, but only about 4 months. Seems to be going well, not getting worse and I know it can't cure me or reverse what I have so I'm thinking nothing new is pretty good. I'm still RRMS but my friend is progressing - the neuro gave her a whole new name - I think it's the next couple levels put together. She has done several rounds of chemo and it has helped her.

Madison's Dad -
I'm very sorry to read your post. My heart goes out to you and I hope the chemo works for you too.

[jeanne]

Thanks empirerecs. always appreciate the feedback.

[laura g]

If Ampyra seems to be of interest , give them a call . Their patient assistance program will work with you and your insurance carrier to help defray the cost to you.

[sich59]

I take 20 mg of Ampyra and 4.5mg of LDN daily. Every month I get infusions of cytoxin and solumedrol. Plus I take 5000mg of Vitamin D3 daily in addition a teaspoon of fish oil (anti-oxident) Vitamins B, C and a lot of calcuim.

Does any of it make a difference? I think the vitamins do. As far as the meds are concerned, I believe they do and maybe that is all that matters. I know that when I stopped the monthly infusions for a period of time last year, my symptoms were worse. So while they might not make things "better" I do believe they slow the progression.

Now if I could only stick to an exercise regiment.......

[Kippy]

I take Lyrica for neuropathy symptoms, Amitriptyline at night for sleep and symptoms, and Ampyra, but have just started reducing that last one. I think it was helping, but now that I'm taking it only once daily I don't notice a difference, so maybe it was all in my mind.

I was diagnosed in Dec. 2007 and have progressed, but am still walking. I attribute that to exercising, pacing, and attitude....and good friends and hubby.