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

[MSNik]

Hi Dave. First of all, Ill apologize if any of the "info" I gave you sounded misconstred..I also did some verifying of information today and found that alot of what you said was absolutely correct, and some of what I said - not. I apologize. I was basing my answers on answers I have been given, but not having progressed in the past 2 years, my info wasnt updated.

Anyway, I have to concur about the heat thing...if someone put heat on my body, Id be in the hosptial immeidately with a relapse- and you would have to pick me up off the ground. Heat, to me - is the enemy....I cant take hot baths or showers anymore...however, I can be outside in the heat, as long as I am constantly in touch with water...water on my feet (a pool or ocean) water on my wrists and the back of my neck- a cooling hat or vest- and I can handle it..I just cant sit in it or apply it in the form of a heating pad.

I am really glad to hear that your wife is seeing an MS specialist...there is no better way to get updated, accurate info; and many regular Neuros do not keep up on whats the latest....if you are comfortable with her level of care, then Im sure its fine - you sound very intelligent and concerned. Im sure nothing gets by you!

All I can tell you about is Rebif- although Rebif and Beta are not much different, one is an interferon A, the other an interferon B....Avonex and Rebif are the identical drug- avonex came out first, many patients complained that the once a week injection left them feeling like they "needed their meds" by mid week, so Rebif was developed as a 3 time a week shot, which is subcutaneous as opposed to intramuscular- in order to keep blood levels or med levels in the blood more consistent...seems to be working because there are more people on Rebif now then any other DMD...I really like it and its worked for me- as I stated before I havent had any progression or new lesions since starting it....Betaseron is taken every other day, thus it is 3 times a week some weeks, and 4 times a week others- not much different overall, the flu like side effects are virtually the same, and it has been on the market longer than Avonex or Rebif- but just the same I prefer the Rebif, the needle is smaller- for one thing- the shot, to me, is easier to manage.....but others who are doing well on Beta, might swear they would never change. I dont know...

I do wish you and your wife the very best of everything...its nice to see a concerned spouse here. I am married with a husband that thinks if you ignore it, it will go away. I still work 40+ hours a week in sales- manage a household, take care of 3 kids (1 is adopted, the other two are his from previous marriage) and an obviously needy husband...life goes on with MS.....but its never easy...

Please shout out more questions, and ask specifically about Betaseron...we do have a few users of that drug here..
Nikki

[hotflash]

Hi Dave

I am not taking any of those drugs. I was diagnosed last March and have had four relapses since then. My right side is my problem mainly my right foot it has never gone back to normal and I still don't have feelings in that foot. I understand the walking problem as I can barely walk three blocks without having tingling and heavy foot, I need something or someone to hold onto. I am in a study group so I don't know what meds I'm on, it is either copaxone or avonex or a combination of the two. I love the program because I get extra attention and I never have to wait for an appointment, I have an mri twice a year and it is all paid for by the study program. I have one large lesion on my brain stem and I just found out that I developed a new small lesion on the top right side of the brain. The good news is that the large lesion is starting to resolve itself. I have started doing yoga specifically designed for ms patients with limitations or in a wheelchair maybe that will help your wife. See if your wife might qualify for a study program as they watch you like a hawk and they really listen to every thing you say without acting like you arebothering them. I think its because you might be on a new drug and they want to make sure your not having new symptoms GOOD LUCK!!!! hotflash

[Snoopy61]

Originally Posted by DaveMcD50

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.

Hi, Dave

I understand your wifes concern about heat. I am heat intolerant, 5 of my 6 exacerbations have been in the summer and triggered by heat and I usually remind those intolerant to heat to use caution if trying heat for symptoms.

My legs will hurt quite a bit and I deal with alot of stiffness (spasticity). I am now also cold intolerant which makes my legs worse, out of desperation I found a heating pad we have and tried it out on my leg(s). I was actually amazed at how much it helped yet did not increase my symptoms.

My very dear husband bought me an electric throw blanket so I could actually wrap my legs in it - I am totally in love with it

I have "spoken" to others who have seen the same positive results that I have. Some will actually take warm baths to help relax spasms and help pain -- I won't even try that, a warm bath does have negative consequences for me. There was one person who was having problems with spasms in and around the jaw to the point it was difficult to open her mouth. She tried a heating pad with positive results.

Like your wife I have never used the Disease Modifying Drugs (DMDs = injectables) and at this time I only use one med for my MS. I have been diagnosed for 22 years, I was 25 at the time with symptoms since childhood.

I wish your wife all the best with her MS and the course of action she chooses.

[LUV2DANCE2]

Dave,
My MS path sounds very similar to your wife's. I was diagnosed in 1990. Very few problems. In the past 10 years the same minor symptoms I had were getting worse, although the MRI's showed no active lessions. I was on Avonex then switched to Rebif when I started declining. Both have not been tested on SPMS, so after a few years I decided not to take Rebif. At my next appointment I am going to discuss Betaseran with my doctor. Good luck to you & your wife.

[taosdaphne]

Hi, Dave. I was dx'd last July (tho they think I probably have had it 15-20 years). The tried me on Rebif, which I *hated* because of the side effects, and turns out my liver didn't like it either--enzymes went thru the roof. Once that setted down I went on copaxone, partly because a friend of mine has done v. well with it and partly because it doesn't affect liver, as other interferons do. I don't mind the daily injections (I've injected dogs, cats, horses and people) but tell your wife if she's really freaked by needles, she never has to see one on thse injectibles----they come with an autoinjector, v. easy to load and use, and if you're the great husband you sound like you could load it for her and she'd just push a button, and about 10 seconds later you pull it out. Some people ice before and after injecting to numb the site a bit, but I'm too lazy.

Good luck to you and your wife!