Follow up MRI's...

[Heather3418]

How many of you that are diagnosed and using one of the disease modifying drugs, are having follow up MRI's every twelve months?  I have a Neurologist that thinks it's vital to have a follow-up MRI every year.  She checks to see if I have any new lesions and if any of my past lesions have reduced in size and most importantly she says, to check for brain volume loss.

I hope that those of you that are on Interferon's are having your blood work done, to check your liver enzymes every 4-6 months.  When I was on Avonex this was checked without fail, every six months.  I do not believe this is an issue with Copaxone, which I am on now, since no one has suggested any follow up blood work.

After 12 months of therapy on Copaxone, I show no new lesions, slight decrease in size in older lesions and only minimal brain volume loss.  I dread to think of what the MRI would look like had I not been on Copaxone.  I believe, as I understand it, that the Interferon drugs are more apt to keep the brain volume loss in check more effectively than the non-interferon drugs.  Correct me if I am wrong.

For those of you that have had a repeat MRI to check on how your DMD is working, I would like to know if your MRI shows a slow down in the accumulation of lesions and volume loss.

To add:  Even though I would not take the chance of going through this disease called MS without one of the DMD's (since that's all we have at present) I am tired of shots all the time.  Sometimes it's hard to stick myself, "just one more time."  It's a game I have to play with my brain, just so I keep on track with my daily injections.  And it IS true what most users say, the longer you are on Copaxone the less injection site reactions you have.  They are also starting to use a 29 gauge needle, (FYI - the "higher" the "gauge," the smaller the circumference of the needle) which is smaller than what they were using; to hopefully reduce injection site reactions even more.  Yipppppeeee!

Best Wishes,
Heather  

[Erin0313]

I get MRI's every year and even had one at 6 months after switching DMD's.

Sadly for me I failed on the copaxone. I was on it for 1 year (365 shots) lol, but when they did my annual MRI they found extensive lesions etc. that weren't there when I started. With those findings they have no choice but to remove you from the med I'm told.

  I started on something that is not approved for MS called Rituxan. It is being tested for MS but hasn't finished trials. The only reason that I was able to have it is that I have RA and it is approved for that. They infuse it twice in 3 weeks and then every 6 months. I was due for my next round at the end of December but when I saw the doctor he wanted to talk to the neuro and nobody has returned my calls. I guess maybe they are trying to figure out what's next.

  Good luck to you all. If the copaxone is working stick with it! It's scary to be on nothing.

Erin :)

[jensequitur]

I have not had a brain MRI since 2006.  Personally, I think it would help with drug compliance if I had a reminder that the drug was working.  Or, if it wasn't working, then I would know, so I could be taking something else.

[WarKitten2008]

Hi Heather, just a quick recap note on the your liver enzyme question above.
When I started copaxone My nero did a baseline liver enzyme test and did say
he wanted them every six months.
But as I had to stop using copaxone after about 5 or 6 weeks due to site reactions
I never had to get the blood test.
I did not end up going on another dmd after that, I am now in process of getting
a 2nd opinion from an MS specialist, If he agrees with my MS dx as of a year ago
then I will go back on dmd treatment.
Have you checked with the copaxone co. to see if they reccomend the blood work every six months.    Or maybe you have already gotten you answer by now.
I am also wondering if my first neuro knew what he was talking about. lol
                                  Warkitten 2008

[Heather3418]

How is the Rebif working for you?  Has it made any changes in your MRI for the better or have you remained lesion stable?  There are so many articles saying that the interferons are better at controlling brain atrophy, I'd like to know what the patients using the Interferons have experienced.

Thanks doll,
Heather

[young at heart]

MY NEURO DOES MY MRI'S EVERY 3-4 MONTHS (CHRONIC BILATERIAL OPTICAL NEURITIS), THE BRAIN ATROPHY AND LESIONS NEAR THE BRAIN STEM.

HE'S REAL CAUTOUS.

BEEN ON REBIF 2 YEARS COME JAN.6

BLOOD WORK EVERY 3 MONTHS---MULTIPLE MEDS

T-LYNN

[Lulu54]

Hi Heather,
I had my followup MRI done in December - the first one at OSU and also the first one since my starting Copaxone.  I had only been on copax for  3 months, but in looking at my MRI's it appears that my lesions are in much better shape.  And the preliminary radiologist report reads that there is nothing enhancing in either my brain or c-spine.  I had several enhancing lesions back i July.  

I don't see the neur until the end of January for the official word on all this, but I am feeling optimistic that the copaxone is working as it should.

Ocassionally I think about ditching the autoinjector and just doing my own shot, but I haven't tried it yet.  I now have virtually no local reaction to the copx.  

BUT I do know exactly what you mean about tricking yourself into the injections.  What works for me is ice cream - I treat myself to a bowl after my shot is completed.  

My best as always, Lulu

[doni54]

Hi Heather,

Great topic!!

I'm glad that your MRI shows that the Copaxone is doing it's job.  I know that makes you feel good.

If or when I ever get dx and if it is MS, I am really not looking forward to sticking a needle in myself.  Needles and I just don't get along really well....hahaha  So, when you say the needles size has diminished, that would be a major plus for me!!!

Thanks, Heather!!!

Hugs,
doni

[nncdalton]

Sounds like you have a good Dr. I do too. I get MRI's every year and a battery of blood work every 6 months.

I am on Copaxone and the injection sites do get better with time, or at least thay have with me. I love the drug compared to the side effects of the iterferon.

As far as the brain lesions I have had clean reports from all of my MRI's in the past 3 years (which is how long I have been on the Copaxone). I recently had an episode during Christmas but that was due to extra stress from a surgery that I had, my husband traveling, and my dog almost died. The surgery was a hip replacement and I went back to work too early. Old injury, not related to the MS.

I had to use that injector for over 3 years until recently. I have found that the site reactions are better if I simply do the shot. I still have problems in my legs and arms because I do not have that much flesh in those areas.

What the Dr told me as far as the Copaxone is that it keeps or reduces the protien from crossing the blood brain barrier and getting to the areas that it can destruct the myelin. I don't know if that is the case but it sounded good to me. He wanted me on the Copaxone to maintain the state that I am in right now and said that he thought that the interferon was not the best choice for me at this point due to the fact that the case of MS I have is somewhat mild. I only have had 3 episodes ever, including the one that I just had, which I am recovering from really well after steroid treatment.

That is GREAT about the smaller gage needles!!!! Happy Happy Joy Joy!!!

Oh, there was one blood test that the Dr did that I had never heard of nor did I know what it was for. It was called a special long chain fatty acid test. It came back fine or normal but I have no idea what it was for. I am not a Dr and I don't care to be. I just want the best in the treatment that is available. Sounds like you feel the same.

Have a good New Year!

Christy D