Copaxone for ppms
Common Questions and Answers about Copaxone for ppms
copaxone
Hi Trude! Glad to see you made it home ok! Did you enjoy the rest of your holiday? We sure enjoyed meeting you and I hope that we can be of some help here for you! I am going to send a message to Monotreme...that is whose hubby was just diagnosed with PPMS and ask her to send you a message about the Copaxone he is taking. She may be able to help you out somewhat and at the very least you can swap notes on what is going on ok?
They still use disease modifying drugs for PPMS. There are less people for PPMS studies so its hard to compare them to RRMS studies. People are not statistics. I have a form of cancer which does not respond to chemo. Guess what chemo worked in my case. He is thinking Tysabri to be more aggressive. I have PPMS and I would do Tysabri if I did not have Cancer.
I talked to the pharmacology staff of the Shared Solutions and they were rather pessimistic in the treatment of PPMS with Copaxone. They were very honest with me and talked about three studies on PPMS and Copaxone. At the very most in small studies of less than 50 people, 22 to 25 percent of them showed some disease progression.
If you are diagnosed with RRMS at first it will not hurt because there is little treatment for PPMS. When I was diagnosed with PPMS I was taken off my Copaxone and told basically I would be treated for symptoms only. Since my PPMS diagnosis Fingolimod a new drug for progression has come on the scene. It is in trials for PPMS. I have had PMMS for over forty years and feel the progression is slow so I do not want to take Fingolimid because of the adverse reactions.
There is a trial coming up at Duke for PPMS drug. The DMDs usually have no effect on PPMS so the Insurance Companies use the fact they are not FDA approved for PPMS as a reaon to not pay for them.
RRMS is mostly a disease of inflammation where as PPMS is one of degeneration. In a nutshell it is hard to measure changes in PPMS so trials would take years longer than RRMS so researchers tend to go for RRMS. They measure the relapses in RRMS.
Neurologist do not like to put you in [the PPMS category] because there are no FDA approved treatments for PPMS. Insurance companies do not have to pay for DMDs since they are not FDA approved."
~ "PPMS - how were you diagnosed?"
http://www.medhelp.org/posts/Multiple-Sclerosis/PPMS---how-were-you-diagnosed/show/1235216
This is a good point, which I did not realize.
Does your acquaintance have spine lesions? The usual drugs (Avonex, Copaxone) do not work for PPMS because these drugs work by preventing relapses and in PPMS you do not have relapses.
Was this person offered any treatment? has he thought about LDN if he was offered no drugs and is not on pain meds?
This is what I know about PPMS. Hope it has helped.
She has been on Copaxone 20 mg qd for 13 years. Prior to that she was on betaserone for 9 months but developed autoimmune hepatitis. Over the last few months, she noticed increase weakness in her right hand and was treated by a neurologist with a course of Solumedrol which initially improved movement in her fingers, but it did not last. She also had an MRI which he told her showed no new lesions.
Wow! What a relief for both of you to get the searching over and be able to move onto the the next steps. I suspect, knowing Craig, that he is not taking this well. I understand. No matter how much you want to stop the doubting and how much you hate the dismissiveness, once you hear the words you can't help but, be angry and grieved. I also bet that this places into sharp contrast the neuros that blamed Craig for his own problems.
You got some good answers about Ampyra. Ampyra vs. DMD is a false choice since Ampyra is a symptomatic treatment. You can choose both.
I do have a few thoughts on the the PPMS question that might (or might not) be helpful.
1. IMO those categories are more arbitrary than the new patient lit makes them sound. RRMS, SPMS, PPMS and PRMS were created by taking a survey of MS neuros.
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