Help Please PPMS Need Advice

[Longtrain]

Hello everyone,

I was diagnosed back in 2006 PPMS when I could barely walk. Started Copaxone and steroid infusions and it was like night and day. However, had to stop Copaxone for about 16 months. When I got back on Copaxone I was also getting monthly "booster" steroid infusions. Have now had to stop steroids because of reactions - body telling me its had enough. That was 18 months ago or longer and my walking has deteriorated. Neuro wants me to switch to Tysabri or Gilenya. I'm JV positive and 57 with 4 beautiful granddaughters, so I'm just not wanting to take that risk with Tysabri. Was ready to make a change to Gilenya and now my neuro is telling me there have been cases of PLM with people on that too.

What am I supposed to do? Neuro has told me Copaxone not doing the job and she doesn't want me to go further downhill. Neuro can't tell me if either drug will help with my walking. She just says its time to move on.

Are there others out there in MS world making these changes? I would appreciate hearing from any and all. Thanks so much!!

[SNOOPY]

Hello Longtrain,

I was diagnosed back in 2006 PPMS when I could barely walk. Started Copaxone and steroid infusions and it was like night and day.

When you refer to steroids and Copaxone as "night and day" do you mean your walking improved? Is it possible you were Relapsing/Remitting rather than Primary Progressive? The treatments for MS are usually not prescribed for those who have Primary Progressive as they have not been shown to be beneficial for Primary Progressive MS. Usually health insurance companies will not pay for MS treatments if a person is Primary Progressive.

What I wonder is if you started out as Relapsing/Remitting and have now transitioned to Secondary Progressive.

Has your Neurologist recommended or have you tried working with a Physical Therapist(PT)? Physical Therapy can be beneficial in improving or maintaining mobility. Physical Therapy doesn't help everyone but you won't know until you try. This is also something that you would need to continue and incorporate into your lifestyle.

[jreagan70]

Hi Longtrain:

It's really hard for anyone to give you advice about MS meds because, as the other poster pointed out, the situation as you've described it is a contradiction.

There are no medications, FDA approved or off label, that have shown themselves to be effective for PPMS. So either your MS isn't primary progressive, or your neurologist wants you to be on risky medications that will be of no benefit to you.

If you can give us more information about your situation, there might be more helpful things for folks to say about it.

[perkylady]

Hello everyone,

I was diagnosed back in 2006 PPMS when I could barely walk. Started Copaxone and steroid infusions and it was like night and day. However, had to stop Copaxone for about 16 months. When I got back on Copaxone I was also getting monthly "booster" steroid infusions. Have now had to stop steroids because of reactions - body telling me its had enough. That was 18 months ago or longer and my walking has deteriorated. Neuro wants me to switch to Tysabri or Gilenya. I'm JV positive and 57 with 4 beautiful granddaughters, so I'm just not wanting to take that risk with Tysabri. Was ready to make a change to Gilenya and now my neuro is telling me there have been cases of PLM with people on that too.

What am I supposed to do? Neuro has told me Copaxone not doing the job and she doesn't want me to go further downhill. Neuro can't tell me if either drug will help with my walking. She just says its time to move on.

Are there others out there in MS world making these changes? I would appreciate hearing from any and all. Thanks so much!!

You may want to read Ben Carson's book, "Take the Risk" which asks the question... by avoiding risk are you also avoiding the full potential of your life?

[hunterd]

I wanted to address your questions, but everything I thought of was covered by Snoopy.great advice

[Gertrude]

How did you get drug therapy with PPMS? I can't get any help from my neuro but Baclofen that doesn't help, just leaves me sleepy, or in the case of a higher dosage, zombie-like with pain. I'm tired of pain in my legs, torso, shoulder. Waiting to get Sativex or other drugs in clinical trials.

[JerryD]

I am PPMS since diagnosis in 2009. I didn't take any DMD until about last year, 2014. I have been on Tecfidera for about 6 months to a year. It isn't approved for PPMS but my neurologist feels that it can be of benefit. I don't know if it helps anything but at least I am trying something.
The alternative is 'do nothing'. I wish that I could help you with the decision but any suggestion that includes the possibility of PML makes me nervous. I would try to use any of the oral drugs that has no connection to getting PML.

[Longtrain]

First off, my symptoms started around 1996 and never went away, that's why I was diagnosed PPMS. All my MRI's were inconclusive for 10 years and finally when I could barely walk, and after 4 neurologists, I was diagnosed.

I was told that the reason DMDs are not prescribed for PPMS because there is no way of "monitoring" the effectiveness. MS is a progressive disease whether you are R&R or PPMS. I thank God that my first neurologist started me on Copaxone. The steroid infusions started a little later and that was when my walking got better and yes a difference of night and day.

I did have to stop both Copaxone and steroids for about 16 months and that's when my walking deteriorated. When I began treatments again, walking got better. MRI's never "changed", so my reasoning is that Copaxone helped in the respect of no new lesions.

I guess I'm asking "what therapies" are helping with walking?!? And who is on Gilenya and Tysabri and what is it doing for you?!? And yes I've had PT but couldn't continue due to missing too much work.

[SNOOPY]

Hello Longtrain,

I guess I'm asking "what therapies" are helping with walking?!?

There is a medication: Ampyra, which might help with your walking.

Information about Ampyra:
http://www.nlm.nih.gov/medlineplus/d...s/a611005.html

And a Thread about Ampyra:
http://www.msworld.org/forum/showthr...n-about-Ampyra

And yes I've had PT but couldn't continue due to missing too much work

This is only my opinion but if you are concerned about your Mobility you make time for PT and exercise to see if it helps. PT offices usually keep long hours to accommodate those who work, for instance the one I go to is opened at 7 am and closes at 6 pm.