Drugs not working....help me out?

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Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 6/7/2007 5:16 PM (GMT -7)   
Well after taking Copaxone for four months and having 2 relapses since I started taking it. my Doc. is throwing in the towel on this one as well. Avvonex did not work either. She has suggested that I start the Tysabri. Kind of scared. Really upset that nothing is working. I really need support.

I started school again (post graduate work) Medical Massage Therapy. Because I have problems with optic neuritis I choose this based on I would not need to see clearly. I'm doing really well in my A&P classes. I haven't told anyone that I have MS so that I know during clinicals I am getting a fair assessment. Now with my right side mainly becoming weak the longer I do things..I'm not sure. Do I continue school? I really like what I'm doing. I don't want to just hang out and have this control my life.

I am really disappointed and kind of depressed. I was doing so well keeping up on the injections. I only missed one and it was not even on purpose.

I thought I was doing the best for myself and I guess that its not going to work.

Tysabri - I just told someone to wait until they have everything sorted out and now it seems like my only option.

My husband had to come home early and stay home the following day to help me out. (I'm the one with the extremely active, very cute 1 year old.)
I don't think my husband understands.

Any advice would be appreciated. I'm super bummed out. sad

photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 6/7/2007 6:35 PM (GMT -7)   
Hi there,
 
I'm sorry you are struggling right now.  We are here for you! 
 
Is there a reason your doctor didn't try the stronger Crabs - Betaseron and Rebif?  I was told Avonex is a step down from Betaseron.  I am also considering Tysabri, but it makes me nervous that it's so new and they don't know the long term effects yet.  
 
As far as school... I guess you'll have to play it by ear.  If the work is going to cause you discomfort maybe stick with it for now but start researching other, less physically taxing, avenues?
 
Let us know what you decide to do
 
Shar
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 6/7/2007 7:16 PM (GMT -7)   
Interferons like Avvonex had long lasting side effects and depression. It was awful that I could not function for days, not to mention the needle size is too long for any part of my body. So I think interferons are totally out at this point.


What does "Crabs" mean?

Its a scary decision that I was willing to make when I was finally convinced to do the "safer" option.
Well now they don't really feel the same now. So I guess I'm suppose to take the "unsafer" option.
Perfect.
eyes eyes

I'm not much of a desk person, the computer really bothers my ON.
I don't think "doing" the massage caused my relapse. I think it was caused by stress of mid-terms, going on vaction soon w/o my baby for 5 days... I've already been crying about the vacation. Ultimately I've had this three times now and each time I feel that I'm not getting full strength back.

Thanks for listening.

photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 6/8/2007 2:20 AM (GMT -7)   
Hi again...
 
"CRAB" stands for Copaxone, Rebif, Avonex and Betaseron.
 
Only Avonex has the long needle.  I think maybe the side effects are more pronounced with Avonex cause you only do one shot a week, whereas Betaseron, it's every other day.. so maybe the side effects are more spread out?  I'm just guessing there. 
 
I'm sure doing the massage did not/will not cause relapses.  You mentioned your right side was weak so that's why I suggested maybe looking at other options in case it becomes too much.  If you're still able to do it and not knock yourself out, that's great. :-)
 
I hope things calm down for you soon, this disease is so scary and unpredictable.  If you figure out a way to get this beast into remission, let me know! I'm waiting for a MRI to see how Betaseron is working for me before I decide on the Tysabri.  My neuro suggested it as I don't recover fully from relapses it seems.
 
Take care,
Shar
 
 
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 6/8/2007 2:51 AM (GMT -7)   

I'm a little surprised your doctor took you off the drug so quickly...usually they like to give any of these drugs at least 6 months to a year to see if they are "working" or not.  Avonex does by far have the largest needle. The other interferons - -Betaseron and Rebif -- are injected under the skin. Betaseron uses the same sized needle that many folks with diabetes uses..and folks with diabetes inject themselves several times a day, sometimes.

Depression can be a side effect of any of the interferons, but it also can be treated with antidepressants.

As for MS controlling your life...unfortunately you really don't have a lot of choice there.  It'll do what it's going to do.  You might be fortunate that you'll have a relatively mild course...or not. And it's not your fault, nor is there much you can do about it, other than to keep trying to take your meds and hope for the best.  You might want to talk with your doctor about career choices, and see if there are some other alternatives you might not have considered that aren't so physically demanding.

 

 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


littlechina
Regular Member


Date Joined Jan 2007
Total Posts : 97
   Posted 6/8/2007 11:42 AM (GMT -7)   
I too am surprised that your doc took you off Copaxone after only 4 months. I was told by my doctor that they will watch me for 6 months to a year to see if it's working. Maybe a second opinion is in order?

In the meantime, try to focus on the positive. I know that can be asking a lot at times, it really can. But stress can be a huge exacerbation to our symptoms. And like Uppity says, it is what it is. For all of us. It sucks. But life will go on. Find yourself as much support as you can, talk with your doctor(s) and get your options, and (I think most importantly) do what makes you happy. Live life to the fullest you can. Don't let this *%$!@ of a disease get the better of you.

Remember, I'm pullin for ya....we're all in this together. *hugs*
~Niki

mortisha
New Member


Date Joined Jun 2007
Total Posts : 11
   Posted 6/8/2007 1:07 PM (GMT -7)   
I started out on Avonex and after 8 months of feeling icky and getting worse I started Copaxone.  No side effects but I wasn't seeing any improvement in MS symptoms.  Then I had three Novantrone treatments and it really turned me around!  I was off the cane and my vision cleared etc., etc.   That was about 4 years ago and I've continued the Copaxone with  very little progression of the disease.  I use the cane very little and only when I have to walk very far.

Buckeye
Regular Member


Date Joined Aug 2006
Total Posts : 68
   Posted 6/21/2007 8:45 AM (GMT -7)   
Thanks everyone. I too thought that it was too early to go off the Copaxone, initially she said that I would try it for 6 months and then wants to pull it now that I have had two relapses. I am due for anther MRI in begining of July. I am going to hold out and see what that looks like. Still doing Copaxone.
My doc. just happend to move so i get a new doc. I am interested in seeing what he has to say. I have a million questions.

I just want to start over new with the new doc.

I will continue my studies in massage therapy with specialization in chronic illness.
I decided that I can stop living because of the "what ifs"

Thank you so much for your support. I'm so appreciative.

My right side is still not 100% its going numb and getting weak just typing this.
Got to go. I wish you all health and happiness. If you don't have one, go for the other one.

rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 6/21/2007 9:00 AM (GMT -7)   
Hey Buckeye!

U GO!!!! I'm so proud of u friend!! Go forward with all u'r plans and adjust as needed...in whatever way to make it possible to keep going and getting what u want in life!! FANTASTIC OUTLOOK!!!!

I'm excited about u'r new doc! A fresh person to look at things for u and a different perspective as well. That has to be a good thing! Hang in there and keep taking good care of u'rself. U'r gonna do great!
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


tkelly3287
Regular Member


Date Joined Jan 2007
Total Posts : 142
   Posted 6/21/2007 10:17 AM (GMT -7)   
Buckeye.. Keep up the good attitude! I know it is hard (especially with a toddler) I have a hard time dealing with my two year old, nevermind school!! you are doing great and it is amazing what light a new doc can add to the meds situation!! keep us updated!

malachy72
Regular Member


Date Joined Oct 2005
Total Posts : 99
   Posted 7/7/2007 7:02 PM (GMT -7)   
My wife just completed her 3rd Tysabri infusion. She had been taking the CRAB injections for 10 years and had been getting progressively worse.

The absence of the side effects of Betaseron alone has helped her feel better. The infusion center is seeing more patients weekly taking Tysabri. You might want to investigate your eligibility.

msladyinca
Regular Member


Date Joined Jun 2007
Total Posts : 26
   Posted 7/10/2007 1:14 PM (GMT -7)   

Hi Buckeye,

I am having my 10th Tysabri infusion tomorrow, and have had zero side effects...in fact -  over 12,500 MS patients have received Tysabri to date with no cases of PML being reported.  Also, a MS patient I met has had 51 infusions of Tysabri.

What are you so afraid of?  While the FDA indicated there was a risk factor of 0.1% (or 1 in 1000), the current risk factor is actually zero in 12,500 (or 0 in 12,500).

No drug is without risk, not even aspirin.

For complete, current, and accurate Tysabri information, feel free to visit the all volunteer non-sponsored website: http://www.mspatientsforchoice.org/

Current safety and efficacy data can be found at http://www.elan.com/News/full.asp?id=995005 which was presented on May 3, 2007 at the American Academy of Neurology meeting.

Whether you decide to restart Copaxone, move to an interferon, or research more information on Tysabri and discuss same further with your neurologist, I hope you feel better soon and I wish you nothing but the very best...,

Lauren  :-)


Our todays are only stepping stones for our tomorrows.
 
For accurate Tysabri (Natalizumab) information:    http://www.mspatientsforchoice.org/

You can visit My Tysabri Diary by going to: http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/

Post Edited (msladyinca) : 7/10/2007 2:25:12 PM (GMT-6)

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