I am 45. I've had RRMS for 20 yrs. Ihave had SPMS for 5 yrs(?). I am EDSS 8 or more. I'm on LDN, baclofen, (alertec) midafinil, 4 aminopyridine. I'm off betaseron now for about a year because I can't get funding because apparently I've progressed too far. Comments? Neuro and MSclinic just say "too bad..***** to be you". I see a feeding tube in my near future. My kids are 7 & 9. Any treatments to try and slow this thing down?
The drugs with the longest safety data are the injectables (Copaxone, Rebif, Avonex, Betaseron), but there are three oral drugs these days too (Gilenya, Aubagio, Tecfidera), as well as a monthly infusion (Tysabri). There is also at least one "off-label" option with growing positive data (Rituxan is used by a couple of our members). Some of us (me!) are also volunteers on drug studies and are taking drugs that aren't out there yet.
Hi there,
We've not met yet, I'm Shelly, and I wanted to say hello.
There are problems with depression and the interferons (Rebif/Avonex/Betaseron). The warnings are on the label, etc. I'm not on any meds, but sure have felt the effects on my mood. Fortunately, I come out of it for now.
I think a good handful of folks are on them here - hopefully they'll pop by
See you around!
my doctor had me try an incontinence drug that was designed for men with enlarged prostates. Obviously that problem doesn't apply to me so my use was off-label. My insurance questioned it but eventually allowed me to try it (btw, it didn't help!).
I'm wondering if dmd's could also be rx'd for PPMS patients? The thing is there is no proof that they would work.
Sorry, but I am just thinking in words here ... this might make no sense at all.
Hi!
I'm an MS patient. I was diagnosed at 22 and am now 28. So, for 6 years I've tried a lot of MS therapies. I've done the Rebiff, Betaseron, and 1 other that I don't even remember the name of. Anyways, I started taking Avonex. This coming up week will be my 5th injection. I have suffered through the fever, the body aches, let me make that severe muscle pains, abdominal pains, and the list goes on. The one side effect that is really worrying me is the depression.
I've been on Betaseron since a year after I was diagnosed in 2000. On August 20th, I quit taking Betaseron cold turkey when I finally received my new oral medication Tecfidera. For the last few days I have been dealing with horrible body aches, diarrhea, cold sweats & the inability to eat (not feeling sick, just not being hungry or interested in eating). I do not have a fever, a cough, allergies or anything else I can conclude to be at fault for these annoying symptoms.
My Neuro wants me to switch from Rebif to Betaseron. I have been taking Rebif since March 09 and have had to do one round of Solu Medrol in May and will find out tomorrow if I have to do another. I also have pretty bad injection site reactions which is why the Neuro wants the switch. I guess Rebif has acid in the injection and it makes the site reactions worse?
My question is, I am under the impression that Betaseron is not pre mixed and also that there is not an auto injector?
I have been taking Betaseron for over 14 years, with no substantial side effects. I was told I would have to switch over to Extavia after the first of the year. ???????????
I have a couple problems with the Extavia, One being it looks to me that Extavia may be trying to save some money ,[[ At the patients expense ] one--a possible cheaper syringe???
The specialist at UCSF is switching me to Tysabri and has told me to go ahead and stop my Betaseron. It has now been 2 shots that I missed (well didn't take) and for the past 2 days I have been feeling like someone beat the crud outta me.
My husband is insisting it is cuz I am not taking my shots. I don't see how that can be. We went to UCSF Monday night (4 hr drive), had my Dr appt Tues which took 4 hrs.
joint pain is not normally associated with MS and is often a symptom of something else. I would hesitate to label it an MS problem until you get an evaluation from the doctor.
I'm glad copaxone is working for you - keep it up!
and welcome to our little spot on the web.
Hard to answer your question without more information. Why do you have only those four choices? Avonex (which I’ve used for 11 years) and others are notably absent from your list. Avonex, Rebif, and Betaseron have been around longest and have the strongest safety profiles. If your MS is more aggressive, then you may be more inclined to consider Gilenya, Tecfidera, Aubagio, or Tysabri. All of the DMDs are discussed from a neutral perspective at the link below:
http://www.nationalmssociety.
I have been on Betaseron since 1995. I have not had an attack since I started using the Betaseron. 3 1/2 year ago I slipped on the stairs and landed hard on my tailbone. A pain shot up through my back and gave me a terrible headache. Over the next few days, my leg started going numb. Went to the doctor and he sent me for x-rays and gave me muscle relaxants. Nothing on the x-ray. Sent me to my neurologist. He examined me and said it was MS and had me take three courses of solumedrol.
I started on Betaseron within a month of the diagnosis. I have symptoms from the old lesions but never had another clinical exacerbation. I stopped taking the Betaseron after 6 years (two months ago). Two more MRIs after diagnosis showed no new lesions. The second MRI (a year after diagnosis) looked like "classic M.S." (I was told by an M.S. specialist). The third MRI (last year) showed some of the lesions were smaller. Question: by whatever criteria is being used now, is this M.S.?
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