Recent MRI

lrblunck · 09-23-2007, 09:07 PM

Had my yearly MRI after doc visit with more symptoms and complaints. I got a call in less than hour from doc and I was told I have more lesions than a year ago and one big one on left side of brain and have to do another round of steroids I was so upset I swore I was never gonna do that again but I know I have too, So now on too another treatment Copaxone didnt do no good for a year I went through hell and to find out Im worse is depressing.They had mentioned Rebif and Tysabri but dont know much about either. Im so confused about it all. Im taking Amitriptyline for pain and sleep now it helps a bit but some side affects, Any input out there? I now have to miss work and just started a new job that can be very stressful I sure hope they are understanding. I wish someone could understand how stressful this all is,and all that goes through my mind all the time.

MSNik · 09-23-2007, 09:17 PM

HI there. lots of understanding...remember you are NOT alone here. You mentioned that you HAVE to do another round of steroids...why? Are you feeling that bad that YOU think steriods wil help? Steroids arent going to change the lesion or the addition of symtoms in the long run- only for the short term will they POSSIBLY help you to survive the relspase you are apparently having....if you really hate steroids that much, then you might want to consider saying NO to them..its totally up to you. Personally, I would weigh out the pain you are in, vs. the way steroids make you feel...

As for the meds..Copaxone, which you were on, is a synthetic drug given daily....it works for some, but not all...Rebif, is an interferon. Its given subcutaneously 3 times a week...im on it, and to date, (one full year as well) I have had GREAT success with it. Ive had 2 sets of MRIs in the past year, neither have shown any new lesions at all...however, again, you have to weigh the pros and cons...Rebif does take a few months to adjust to, and you will have lousy days on it in the beginning...the good news is the "flu like symtoms' last only a few hours, so if you take it before bed, you will sleep thru it. I didnt miss a day of work while starting out on Rebif, but some people have a harder time adjusting to it then others..theres things you can take, pre-shot, to help with the side effects, and they do go away in a few months..
Tysabri, is a once every 28 day infusion, which must be done at a certified Touch Center..usually in a hosptial setting..it takes 3-4 hours to get, and is done thru a vein, much like Chemo. Years ago, it had a bad rap- a few really bad things happened, then they took it off the market and brought it back last year...I have not done Tysabri, but others on this board have, and you can search Tysabri posts here..from what I have read, the people using it are pleased with it...however, it seems to take 2-4 months (2-4 infusions) before you feel any real difference....it has its good points and bad as well, as well as more severe side effects. However, the amount of people experiencing those side effects seem to be limited.

The choice is yours to make, but I would do alot of research before making that choice. Either drug is completely different from Copaxone, and your results are more likely going to be better, since Copaxone wasnt working for you.

I feel for you. Your sadness, your pain and frustration are evident. You have to remember that this will pass, and you will start feeling better soon. Nothing in the MS world lasts forever....please get some rest and try to get stronger..remember, the mind is key to how you feel, and the mind craves rest!
Feel better soon.
nikki

MSJayhawk · 09-23-2007, 09:40 PM

Quote:

Originally Posted by lrblunck

Had my yearly MRI after doc visit with more symptoms and complaints. I got a call in less than hour from doc and I was told I have more lesions than a year ago and one big one on left side of brain and have to do another round of steroids I was so upset I swore I was never gonna do that again but I know I have too, So now on too another treatment Copaxone didnt do no good for a year I went through hell and to find out Im worse is depressing.They had mentioned Rebif and Tysabri but dont know much about either. Im so confused about it all. Im taking Amitriptyline for pain and sleep now it helps a bit but some side affects, Any input out there? I now have to miss work and just started a new job that can be very stressful I sure hope they are understanding. I wish someone could understand how stressful this all is,and all that goes through my mind all the time.

You might ask your doctor about Estriol. I have had MS for 25 years and never taken any meds. I use nutrition, plenty of rest, and avoid relapse triggers. My MS is now PPMS. I am no longer working and am on full disability. That was a hard decision, but my condition improved greatly because I no longer had to endure the day to day stresses. Starting a new job is indeed stressful. I think 99.9% of us here understand what you are experiencing and have been there. God bless you. I will remember you in my prayers.

MSNik · 09-23-2007, 09:45 PM

You could certainly ask about Estriol, but it is not FDA approved for MS that I can find..tests are being currently done and studies, being studied to find out the effects of Estriol and MS, however at this time, most Neuros wont go that route ...some will, though, and with much persistance on your part, you will find a GP or possibly even a Neuro who will let you try it. Youll need to really research the effects of estriol and sell yourself on it...much of it has to do with age, previous births or desire to get pregnant..and of course family history...estriol isnt for everyone, but it is something to think about.

moore170 · 09-24-2007, 06:11 PM

I have taken all the drugs for MS except Rebif. I am currently taking Tysabri. I have only had two infusions with the third next week. I am at the infusion center for about 2 1/2 hours. The first infusion I had a very mild headache for about a week, the 2nd infusion I got the same mild headache but it only lasted one day. I think I feel better (more energy) but as Nikki said it probably takes a few more infusions really know.
I was on Copaxone for about 8 years. I didn't get any new lesions until the last MRI. This is why I changed and went on Tysabri.
I have taken ACTH (pre CRAB days) Azathioprine (pre CRAB days), Betaseron, Avonex, Copaxone, Novantrone (two maximum treatment sessions) and now Tysabri. I have been lucky and had minimal side effects. I really didn't notice anything using any of them but I have had MS symptoms at least 25 years and I attribute the use of these drugs for slowing the progression of the disease.
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