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Primary Progressive MS
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An_204810 posted:
I have recently been diagnosed with Primary Progressive MS. Although there are no drugs approved to treat this type of MS, did anyone try any drug anyway? If so, what type of response did you have? Thank you.
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moonlight1228 responded:
Hi, I have PPMS too. I have not tried any of the treatments but would love to hear of anyone that has and if they have noticed a difference. I met an older man that has ppms at a meeting and he has been injecting Ribif for 10 years (I think that is what he said) and hasn't worsened. He is using a scooter, foot brace, walker but doesn't seem to be that much worse in getting around then I do at 46. I am guessing he was in his 70's. So maybe that is working or maybe that is as bad as he will get? I don't know. With our type there really isn't an easy way to track things. I have the prescription for the "waling" drug but have not started taking it yet. I had a fall and dislocated my shoulder & now have frozen shoulder so want to have that all fixed (I hope the MS let's it get fixed) before I try the new drug so I can get a good base for monitering my walking and any symptoms I may get from taking the drug. I do know that we are so along with the ppms type since it is so uncommom. All the support groups, info, meds, etc seem to be for the rrms. I have been to the info meetings and it just doesn't do me much good because no one can relate or provide answers. When I meet others with MS it is always the RRMS type and they ask me what drug I am injecting. No one understands that his is not for the PMS type. They tell me I am so lucky to have MS in this day because of the drugs available. Huh. Wish that were so. PPMS seems a hopeless type to meet. Live for today but prepare for the worse because it will most likely come. My biggest concern is being a single mom to an 8 year old boy with no one to take care of him when that happens. Good luck and feel free to write me. Selena
 
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swampster1952 replied to moonlight1228's response:
Good morning Moonlight,

The "walking" drug you are referring to is Ampyra. It is not a disease modifying drug (DMD) but a symptom modifying drug.

I have been on it for about 3 1/2 months and have not noticed any improvement in my walking. I will probably stop taking it next month when I see my MS doctor.

I am secondary progressive, not primary progressive. I am on Tysabri and have been for 43 months. This drug has slowed down the progression of the disease for me.

good luck with your MS,

Dave
 
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moonlight1228 replied to swampster1952's response:
Thanks for replying Dave. Yeah, just couldn't remember the name of the drug. I know it is not disease modifying thus the reason I haven't jumped right on it. Wish it was. Sorry it hasn't improved your walking. I am not a big drug person so am going back and forth with even trying it. I am told that none of the disease modifying drugs work for my type. I guess the bright side is I don't have to inject myself right? I am glad the Tysabri is helping you and others that are on it. Good luck with your MS too. Selena
 
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donsmith41 responded:
have had ppme for 5 years would like to talk with others about ddos and donts.to better work with my condition. thank you
 
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Happymspage responded:
PPMS is thenworst kind of MS Most of us end up needing wheelchairs. instarted using a scooter in the second year after diagnosis. without one .I just get very tired early in the day.. but don't let a wheelchair stop you from having fun.I have traveled much about the world in a chair.I'm planning a cruise in Jan.of 2014 of 10 days and have already reserved a wheelchair accessible room. I just suddenly needed a wheelchair one week and my doctor wrote the scrip I was more active once I got it as before my walking distance with crutches and braces was very short in distance and very quickly excusing. many of us had to have our homes regard for a wheelchair. Richard
 
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avahoney19 replied to swampster1952's response:
Hi Dave

I also have secondary progressive, I apparently made the fun transition from RRMS to Secondary Progressive in early 2013. I have not taken any disease modifiying drugs while having RRMS because I did not know I had MS. I was diagnosed with MS in May of 2013 due to my symptoms escalating and progressing in the January/February timeframe of this year. My Neurologist does not feel I am a candidate for disease modifying drugs as I have moved out of the Relapsing phase of the disease. I hate to take these types of drugs if the benefit doesnt outweigh the risk, but at the same time I am worried that not taking a disease modifying drug will cause me to progress faster and that would be bad. I am aslo positive for the JC virus so I am not sure Tysabri would be safe for me. Any thoughts would be greatly appreciated.

Michelle


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