Medications

[time2bloom]

Hi everyone.  I have had MS for 11 years, been on meds for 1.5 years which is copaxone.  The reason for being untreated is the docs didn't believe that I had MS for years.  Now that I have been dx.  I have continued to decline while being on copaxone.  My symptoms act up more frequently daily and I flare frequently.  The neuro hesitates to change me from the copaxone.  I was wondering how and when does one decide to change to another medication and when one changes how long does it take to see results from the new medication?

I have not seen any slowing of the progression of the disease with copaxone only a steady continuing decline and I have relapsing remitting MS.  

[time2bloom]

Thank you.  

[COBOB]

Even with Copaxone, there can be lesion progressino.  The thing they typically rate in the lont term longitudinal studies is the slower progression on the Kurtzke Expanded Disability Status Scale (EDSS).  As Jen said, MRIs are only part of the story.  Some people show very slow progression on lesion load but have huge increases in their EDSS score.  

There have been longitudinal studies with Copaxone that show a slower progression in the 15 year mark.  

"The 15-year clinical study demonstrated that more than 80 percent of patients were still walking without assistance despite a mean MS disease duration of 22 years, and two-thirds of patients have not transitioned to secondary progressive MS. Patients who remained in the study over a mean of 15 years showed a reduction in annualized relapse rate (ARR) from baseline as well as minimal increase in Expanded Disability Status Scale (EDSS). On average, the ARR in the ongoing cohort declined from 1.12-0.82 to 0.25-0.34 at the 15-year analysis."

http://www.unitedspinal.org/msscene/2010/03/01/copaxone-15-year-study-in-patients-with-ms/

(I know Teva published the research, but it appears to have passed peer review.)

Bob

[jensequitur]

1.5 years on Copaxone, and you had five last year?  Hmm...  Bob is right that it takes a while to start working, but you don't want to waste time on something that isn't working, either.  I'd say give it the rest of the year and see how things look.

The MRIs do not give a complete picture.  You can definitely progress, yet on the MRI you look just fine!  

[time2bloom]

I realize that.  

[COBOB]

IPIR is shorthand for the Immediate Post Injection Reaction that you can get sometimes while injecting Copaxone.   The other thing to keep in mind is that Copaxone may require 9 months to provide protection, so relapse or diseae progression in the first 9 months should be expected.

Bob (in my first relapse after starting Copaxone.)

[time2bloom]

Thank you.  What is IPIR?  I have had 5 flares last year with the copaxone and one this year so far.  I am having a big one right now.  I just got labs drawn today to see if its anything that can be done with a gp.  I do have a ms neurologist.  

In March I see him again.  Its a super long drive to see him.  We will discuss getting a new MRIs done to see changes.  Can I be progressing even if the mri's stay unchanged.  As the symptoms are worsening like the speech and cognitive decline, and my abilities to do daily living activities. I can do less for myself now than I could a year ago to two years ago when everything started happening big time for me MS wise.  Before that the flares would resolve without leaving me worse off.  

[jensequitur]

Hey, if you think you're still progressing with Copaxone, you should investigate switching.  I was on Copax for 3 years, and had three relapses a year.  I should have been switched to another DMD after the first year, as the stated benefit of Copaxone - reduction of relapses - was not happening.

I switched to Betaseron after the fifth IPIR.  No flu-like reaction and it's easier to take the drug because I'm not afraid of the IPIR.

With Betaseron, you'll need a blood test every six months.  

Your neuro should be monitoring the DMD with MRIs every year.  Mine did not - one of the reasons I finally found another one.

[HVAC]

Hello I am sorry you are seeing more progression. It is a shame the Doctors waited so long to put you on Copaxone. Progression happens with or with out symptoms. Copaxone is meant to slow Progression, not necessarily help symptoms. It works in 30% of people who are new to RRMS. It is probably the least heavy hitter of the DMDs. Its advantage is it has the least symptoms.

Are you seeing a general Neurologist or an MS Specialist? If you are not seeing an MS Specialist you may want to see one. If you are having more issues you may need to push for one of the interferons or even Tysabri or Gileyna. The problem is the better a drug works at slowing progression the more side effects and risk is involved. This is known a risk/ benefit analysis.

These drugs do not work on symptoms directly. They can slow progression and that can make you feel better. There are two things at work in MS inflammation which comes and goes and with it symptoms. There is also nerve damage which is permanent and so are the symptoms related to it.

There are other treatments for symptoms such as nerve pain and muscle spasms. There are also steroids for major flairs. Steroids work for some but not others and have there own draw backs.

What symptoms do you have? If the Copaxone is not working you have every right to ask for another DMD. I suffered with symptoms for too many years because I did not know any different. My GP treats most of my symptoms because it is easier to contact her and be seen.

I am sorry you were on the slow track. One day medical science will shake their heads at the conservatism of this time in MS diagnosis and treatment.

Alex