Start Medication?

[molliek]

I have recently been diagnosed with PPMS. I know there are no medications approved for primary progressive but has anyone tried any anyway? If so, what type of response did you have? I have alot of weakness on my right side and am just afraid not to do anything. Thank you.

[chrisinpa]

i was kind of in the same boat. i'd take some drug that wasn't too toxic -betaseron or copaxone. what have you got to lose? best of luck.

[tellnhelen]

Difficult to decide

After 10 yrs on meds,I had a major flare that did plenty of damage...changed my life. I felt betrayed by the medicine. They told me I was now SPMS. I decided to try LDN and a rigorious program of exercise, diet and vitamins...so far there's been some progress. I feel I'm not sliding downhill.

[MrsBones]

I have PRMS, so while I'm progressive,I also have relapses. I take Copaxone, but my experience wouldn't mean much here.

However,as long as some inflammatory process is going on (enhancing lesions) the DMDs may help. They might not be as effective on someone with PPMS as someone who has relapses, but there may be some benefit. Worth a try, if it's not a financial or health burden,IMO.

Otherwise, it never hurts to be as healthy otherwise as you could be. Eat well, exercise, quit smoking if you do...that kind of thing.

If I'm not mistaken, there are one or two PPMS members who have tried meds. Hopefully, they'll be able to give more personal experience.

[KoKo]

Hello Molliek

As MrsBones said, there are some members with PPMS who have tried DMD's.

I've had PPMS for 11 years. Not one of my MRI's ever showed enhancing lesions. Because of that fact, my neuro, as well as 4 neuros from Cleveland Clinic Mellen Center for MS, told me the DMD's would not be beneficial.

I initially wanted to take a DMD, but after much research on my own, the reasoning of the docs makes sense to me. I don't really want to spend huge sums of money, putting drugs in my body that aren't going to be beneficial.

But, that's my experience. There may be other persons with PPMS that have enhancing lesions, and therefore may have some benefit from the DMD.

MrsBones said:

Otherwise, it never hurts to be as healthy otherwise as you could be. Eat well, exercise, quit smoking if you do...that kind of thing.

And I agree!

Good luck with your decision

Take care,
KoKo

[sich59]

I've taken both Betaseron and Copaxone and neither did anything for me. I don't think this was unusual but everyone is different. You might want to try it anyway.

Now I'm taking Aminopyradine and LDN and have had better results with these meds than either B or C.

I also take a monthly IV regiment of Solumedrol (steroids) and Cytoxan (chemo).

I was on the fence about how much the monthly infusions were helping, since I wasn't feeling any different. Then I went 7 weeks between infusions instead of the normal 4. By the end of the 7th week I was hobbling around as badly as ever. Things returned to normal for me after the infusion.

So for me, this combination of medications seem to keep things stable and has been doing so for a while now. That's the best I can hope for.

[Grace]

I am PPMS and am on Copaxone... I did have enhancing lesions on my MRI.

[molliek]

I want to thank all of you for your responses. It has really helped. Up until now I have not talked with anyone who has PPMS--felt really alone. It is sometimes hard to read all the materials about help for other types of MS only--although I am glad there is help! Anyway, thanks to all.

[gmurf]

molliek

I was diagnosed with primary progressive back in 2003. I had tried several medications since then with little or no success. I reluctantly started copaxone injections 1 wk ago. I have read and heard from my MS Dr that there have been some improvements seen using copaxone with this form...I will let you know if anything positive results. The pins and needles, drop leg and fatigue have really escalated in the past few months. I sincerely wish you well in this journey.

[JudySz]

I am going to mellen ctr., totalk with them. i was just dx last year and they gave me the rms dx, but since i am getting worse and o not have major flares or relapses, i am now progressive. i was in such shock i did not ask what kind but from my lack of relapses i would say ppms...i was on rebif and stopped last mnth. it was going to cost alot since i was done with my year of only 50 a month. i am going to ask but if it is not helping i feel like koko why put meds into my body that are not helping.

will let you all know what they said

Judysz

[djprieve]

PPMS and my research

I have been having issues for years all thought to be connected to my known advanced disc degeneration disease throughout my spine, which has been deemed inoperable. After visiting several surgeons, I was sent back to my neurologist whom I had been seeing for my DDD for years, a spinal tap, new mri's with contrast and blood work, I was able to find out in 5/2010 that I also have MS with out any doubt.

As I connect all the dots over the years this MS has most likely been progressing in tandem with the disc degeneration disease. I spent months doing my own research, since, I saw no urgency to jump into any treatments since this has been present for quite some time. I do not see in my case that subjecting myself to expensive drugs, without any cure and with many side effects is going to benefit me in anyway.

I do work with a nutritionist who has many MS clients and in addition to my nutrition she suggests, she recommends 2400 units of vit e, 5 grams of lechithin, 2 taplespoons of cod liver oil daily, in the evening before resting and away from any meals to all of her MS clients.

I also continue to search for alternative pain relief and adjust to my new way of life as required.

I am housebound for the last year, I use a walker in the house, I need a wheel chair to go anywhere outside of the house, but at least I have found this message board.

"We are all in this together".......
Peace and best wishes to everyone.


*** Moderator's note - line spacing added to enhance readability. Many members have difficulty with large blocks of text. ***

[demacon]

NEWLY DX WITH PPMS

i WAS DX 3 WEEKS AGO. i KNOW NO ONE WITH MS. I WOULD LOVE TO TALK TO SOMEONE WHO COULD TALK TO ME ABOUT THIS.