Information requested for SPMS patient re: Rebif vs. Betaseron vs. Methotrexate

[DaveMcD50]

Hi All ... My wife was diagnosed with MS 14 yrs ago at appx Age 48. Had one episode that she is aware of, for which she was treated with one-time infusion of steroids. Treatment apparently relieved symptoms of episode. At time she read as much as she could on MS and happened upon book written by British woman who had experienced success using heavy vitamin regimen, which she opted for. Met wife 10 years ago. Only noticeable symptom she had was occasional twitching of leg. Did lot of travel/touring in early years of relationship. Left leg would start to drag if she walked for extended period of time. This has become much more of problem in past couple of years, with symptoms obvious after walking or being on feet for relatively short period of time. MS fatigue became progressively worse, although in past few months seems to have improved, which could be result of her having starting doing yoga and/or being treated by Chiroparactor. MRIs taken over recent years show no increase in number of lesions, but wife's condition has obviously deteriorated. Her MS physician has told her that she is now in Secondary Progressive stage of MS and needs to start taking some type of drug treatment. Had 3-day infusion of steroids couple of months ago, but no apparent benefit - unless responsible for apparent improvement in fatigue. She is currently mulling over 3 treatment options and is having difficult problem deciding which to go with. Rebif and Betaseron are 2 of the options which involve taking shots, which she is not crazy about, as well as possible side effects. Other is Methotrexate, which can be taken orally. Latter does not appear to have clinical trial track record of other 2 drugs in terms of effectiveness for retarding progression of SPMS. Any info/advice you are willing to provide relative to pros/cons of these 3 treatment options for SPMS - or any alternative treatments - would be very much appreciated!!

[MSNik]

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.

[Snoopy61]

Originally Posted by MSNik

And, she probably doesnt.....however, if she does, doctors probably wouldnt be talking about the disease modifying drugs. THey arent approved for SPMS.

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.
.....progression IS DEFINED by new lesions.

Hello, Dave and welcome.

Betaseron has been approved for SPMS and there are many with progressive MS (SPMS & PPMS) who do use Methotrexate and other "chemo" drugs to help slow progression. Some have found it helpful other have not. There are MANY drugs used for MS that are used "off label" meaning not approved for MS.

When someone is relapsing/remitting (RR) then starts to accumulate more disability and the relapsing and remitting no longer happens usually SPMS is suspected. Lesions are not a good indication.

Dave, has your wife tried Physical Therapy (PT) for her legs - she might see some improvement with PT.

Fatigue - it's important to make sure there is not an underlying cause for her fatigue.

MS can cause sleep disorders and a sleep study would rule that out as a cause for her fatigue. Some meds take to help with symptoms cause fatigue and some have fatigue when having a relapse.

I am wondering if the twitching could be spasticity. Spasticity (muscle spasms, stiffness, pain) can be treated with meds, stretching, exercise/PT and heat (heating pad, electric blanket).

Sorry, I didn't answer your question. Which one of those meds would be best - there is no way to know. Your wife might respond well to one of those but not another. Unfortunately, it can be a trial and error and it's always possible that none of those choices will slow down progression.

[DaveMcD50]

Hi Nikki ... thanks very much for your input. My wife does in fact see an MS specialist. Per this MS doctor my wife has moved into the SPMS phase. My wife has only had the initial episode 14 years ago from which she recovered after being treated with an infusion of steroids. However, there has been a definite progression or deterioration in her overall condition over the course of the past few years, particularly with walking. It's my understanding that with RRMS if there is an "episode" there is also a remission, although there may not be a full remission to the original state. My wife has not had any such remissions since the initial one. Her doctor says that although her MRIs have shown no change in her brain lesions, that there has probably been increased inflammation within her brain that would not be picked up by the MRI, and which would be responsible for her "progression". Some of this progression is quantifiable via comparison of such tests as timed walking, etc. from one visit to another. I met the MS doctor for the first time a couple of weeks ago. When I asked her what treatment option she would select for herself if she were in my wife's position, she said that she would use a DMD to hopefully slow the progression, and specifically indicated that she would probably opt to take Betaseron. My wife has avoided taking drugs for the past 14 years aside from the initial steroid infusion and another such treatment done a couple months ago with no apparent benefit. My wife hates needles and was hoping to take something orally, which is probably why Methotrexate is an option - but not one the doctor seems enthused about because it does not have same clinical history in terms of its actual effectiveness as do betaseron and rebif. My wife is really betwixt and between in terms of what she should and should not do. That is why any input from those others of you who are living with this disease is valued!

[DaveMcD50]

Hi Snoopy ... thanks very much for your response! Your input and information seems more in line with what my wife has been told by her MS doctor. I'm no expert but am inclined to agree with the doctor's assessment that my wife's condition has moved into another phase. Whether that phase is called SPMS or something else doesn't really matter that much to me as the fact that my wife's overall condition has deteriorated and we both are obviously interested in pursuing any treatment alternatives that may at the very least slow this progression. My wife did have PT for her legs, and her doctor wants her to go again after seeing her last week. However, the previous PT provided no obvious benefit. My wife has had occasional twitching in her leg(s?) since I met her 10 yrs ago. For the most part she agrees with your suggested treatment of stretching, etc., but did question the use of heat as it is her understanding both from research and experience that heat exacerbates MS symptoms. And yes, you did answer my question ... although it wasn't the obvious answer I was hoping to receive, my gut sense is that it was the right one ... i.e., that there is no way of knowing what if any particular treatment option will be best for my wife! Thanks!!! - Dave