13th March 2008
Dave, first of all welcome...we are glad that you came to us for information; however it appears that you have your info confused..either that or their is confusion in terms being used.
Let me give you some infromation and you can take this back and verify what you said vs what Im telling you.
MS does NOT always progress...the first and most common stage, which over 90% of people have, and this is what you are describing your wife to have, is relapsing remitting MS. Sounds exactly like what your wife has been dealing with all these years...the key to this is that the disease can actually not have any real symtoms or very minimal symtoms- for very long stretches of time...then, all the sudden something happens. This something, is known as a relapse or excaberation. It is defined by a set of new or reoccuring symptoms which last longer than 24 hours and do not go away on their own.
Now,it is possible that your wife could have had primary progrssive MS; however it doesnt fit....this form of MS is much more progresssive and she would have had many issues throughout the last few years which would have really been obvious. Im sticking with R/R as what she was originally diagnosed with.
That being said, she doesnt necessarily have SPMS now. And, she probably doesnt.....however, if she does, doctors probably wouldnt be talking about the disease modifying drugs. THey arent approved for SPMS. ITs possible that a very small percentage of docs would try to us a DMD in order to slow down progression, but again, they arent suposed to work for SPMS.
My guess is that your wife is finally getting more active in her MS in general and her R/R has started "up" again....this being said, using DMDs (avonex, betaseron, Rebif, copaxone) would make perfect sense...too bad she hasnt been on them already, it might have prevented this- but that is a very personal choice.
Now, Dave, I could be wrong here. I know of one person with SPMS who is taking Rebif, and truthfully we cant tell if it is helping her or not. She is constnatly having issues, but she has other health issues which complicate the MS as well....but her doc has her taking Rebif simply because in his opinion "it cant hurt". It really cant....but will it help?
Methotrexate is not approved for MS ; however it is being used in small doses for other autoimmune diseases...I personally wouldnt want that in my body as it is closely related to Chemo.
I take Rebif, and Rebif and Betaseron are both interferons. Interferons are made up naturally in the body- the shots are completely different. I happen to love Rebif and can tell you all about it, while never haveing been on Beta.
Both rebif and beta have some pretty harsh side effects the first 3 months you take them, flu like symtoms which are horrible..but those symtoms can be managed with an over the counter NSAId - here alot of us take Aleve pre shot because it seems to work best.
What makes me question your post the most is that if your wife hasnt gotten any new lesions- then something is not right about this explanation.....progression IS DEFINED by new lesions. I believe that your wife is having a relapse- and thats normal- and that at this time, the docs are trying to convince her to start meds to prevent more relapses, more lesions and/or more symtoms...but progression isnt possible without new lesions, shes done very well for a long time without progression so moving it to SPMS doesnt fit.
Are you guys seeing an MS Specialist or a regular Neuro? It might be time for a second opinion and evaluation....before anyone tells you that she needs to be on meds or suggests Methotrexate or tells you that she is progrssing, I would want another opnion.
Whatever we can do for you, shout out. Were here.
Let me give you some infromation and you can take this back and verify what you said vs what Im telling you.
MS does NOT always progress...the first and most common stage, which over 90% of people have, and this is what you are describing your wife to have, is relapsing remitting MS. Sounds exactly like what your wife has been dealing with all these years...the key to this is that the disease can actually not have any real symtoms or very minimal symtoms- for very long stretches of time...then, all the sudden something happens. This something, is known as a relapse or excaberation. It is defined by a set of new or reoccuring symptoms which last longer than 24 hours and do not go away on their own.
Now,it is possible that your wife could have had primary progrssive MS; however it doesnt fit....this form of MS is much more progresssive and she would have had many issues throughout the last few years which would have really been obvious. Im sticking with R/R as what she was originally diagnosed with.
That being said, she doesnt necessarily have SPMS now. And, she probably doesnt.....however, if she does, doctors probably wouldnt be talking about the disease modifying drugs. THey arent approved for SPMS. ITs possible that a very small percentage of docs would try to us a DMD in order to slow down progression, but again, they arent suposed to work for SPMS.
My guess is that your wife is finally getting more active in her MS in general and her R/R has started "up" again....this being said, using DMDs (avonex, betaseron, Rebif, copaxone) would make perfect sense...too bad she hasnt been on them already, it might have prevented this- but that is a very personal choice.
Now, Dave, I could be wrong here. I know of one person with SPMS who is taking Rebif, and truthfully we cant tell if it is helping her or not. She is constnatly having issues, but she has other health issues which complicate the MS as well....but her doc has her taking Rebif simply because in his opinion "it cant hurt". It really cant....but will it help?
Methotrexate is not approved for MS ; however it is being used in small doses for other autoimmune diseases...I personally wouldnt want that in my body as it is closely related to Chemo.
I take Rebif, and Rebif and Betaseron are both interferons. Interferons are made up naturally in the body- the shots are completely different. I happen to love Rebif and can tell you all about it, while never haveing been on Beta.
Both rebif and beta have some pretty harsh side effects the first 3 months you take them, flu like symtoms which are horrible..but those symtoms can be managed with an over the counter NSAId - here alot of us take Aleve pre shot because it seems to work best.
What makes me question your post the most is that if your wife hasnt gotten any new lesions- then something is not right about this explanation.....progression IS DEFINED by new lesions. I believe that your wife is having a relapse- and thats normal- and that at this time, the docs are trying to convince her to start meds to prevent more relapses, more lesions and/or more symtoms...but progression isnt possible without new lesions, shes done very well for a long time without progression so moving it to SPMS doesnt fit.
Are you guys seeing an MS Specialist or a regular Neuro? It might be time for a second opinion and evaluation....before anyone tells you that she needs to be on meds or suggests Methotrexate or tells you that she is progrssing, I would want another opnion.
Whatever we can do for you, shout out. Were here.