Just dignosed need your advice please

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msmale
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 12/30/2012 3:42 PM (GMT -6)   
Hello,
I just found this wonderful site. Thanks for a place to read and share our personal testomonies.
I have just been dignosed with RRMS and I'm full of questions. I sure hope some of you that has been there can help me out. I have seen my neuroligist for two visits now. The first time i was dignosed ,I did the infusion and the steroids for four days. The second visit I find out just how expensive the meds will be. The Dr. threw alot of information at me and now I'm really confused about what to do. I was told on my first visit after being dignosed that the infusion would be a life time treatment monthly for me. The second visit the Dr. tells me all about the different clinical studies and that i need to be in one of the three studies , and gave me a pamplet to read. I thought i would get an infusion but no, now the story has changed no infusion for me.
After readin the information I'm more confused than ever.
My question is, if you have RRMS how are you being treated ?  I'm thinking about a second opinion.
I realize I do have MS but I don't know what to do. All the meds have soooo many side effects. I'm afraid that the side effects will be worst than the real problem. Has anybody here ever did the clinical studies ?
If so what do you think of the studies and has the meds helped you ? The new meds that were mention to me are Gilena and Copaxone for the clinical study. Anyone familiar with these ?
Please share your experience with me if your on these meds, and also if you have did the clinical studies.
Thank you for reading this and sharing your story with me if you choose to do that.
 
May God Bless each and all
MSMale sad

jules1965
New Member


Date Joined Dec 2012
Total Posts : 10
   Posted 12/30/2012 9:31 PM (GMT -6)   
Hello, I was diagnosed 2 months ago. I am on rebif and doing well. avonex and copaxone are on the same line as rebif. they have been out there for a long time. A friend of mine tried the gilena and did well but not for long he went down hill again. he is also more advanced with lessions on his spine and neck. My brother inlaw is trying a new pil.l clinical study. my nuro told me to hold off on that one it has not been out that long and a couple of people have died after taking it, so i decided to go with the injections.
Also the cost for the pills are 45 thousand a month his ins will pay most. ouch.

Julie

msmale
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 12/31/2012 11:48 AM (GMT -6)   
Hi Julie
Thanks for your reply. I'm glad refib is working for you, i wish you the very best.
At this time I'm not taking anything. I'm just trying to do resarch on MS and the medications.
Its alot to deal with, and the meds are so darn expensive. My insurance don't pay that much, and i have a hugh deductible.
 
Thanks,
Brandon

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 12/31/2012 5:02 PM (GMT -6)   
Rebif and Avonex are both interferon beta 1a. They have similar side effects. Rebif is a sub-quetaneous injection. Avonex is a intra-muscular injection. Betaseron is also an injectable interferon (beta 1b). Those meds have the flu like symptoms for 5 to 8 hours after injection.

Copaxone is not an interferon. It's a daily sub-q injection. It tends to have only local side effects like mild pain and swelling at the injection site.

Gilenya is a daily pill. It can cause liver and vision problems.

Remember that being enrolled in a study means you may receive a placebo. This means you are receiving no treatment as part of a control group. Typically this happens 50% of the time.

Most of the MS meds offer financial aid to those in financial need. Also if money is a problem you can contact the MS society or the MS association of America for assistance.

I hope this information helps.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

CaliMom13
New Member


Date Joined Dec 2012
Total Posts : 6
   Posted 1/1/2013 3:01 AM (GMT -6)   
Hi, I'm new to this forum. I was diagnosed with RRMS in 2003. Started Copaxone that same year and have been taking it ever since. I've had no major side effects from it besides some scar tissue and skin indentation at injection areas (mainly my legs). I do believe that Copaxone has helped me over the years as far as not having many major flare ups. Just had a brain/spine MRI done last week per my neurologist's request since its been many years since I've had one. I am curious to hear the results, how many lesions Ihave, etc. By the way, Shared Solutions will often help with co-pays of Copaxone if one is having problems affording it. I'm fortunate that I pay $0 for it every month, thanks to Shared Solutions! wink

msmale
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 1/1/2013 8:50 PM (GMT -6)   
Thanks for the replys.
I didnot know assistance was available for getting the meds. I knew you guys would have some answers for me. I didn't want to do the clinical studies, but thought that would be the only way to get the meds that I need. This is great news, I will check this out. Thanks again for the info.
My doctor didn't tell me about this of course. He just wanted me in the study and didn't leave me with another option.
Thanks Gretchen 1, and CaliMom13.

nikki1980
Regular Member


Date Joined Jan 2012
Total Posts : 38
   Posted 1/3/2013 7:09 AM (GMT -6)   
I'm reading this and thinking I should throw my 2 cents in. I am a 32 year old female, diagnosed with MS 1 year ago. I started on Copaxone very quickly after diagnosis and have been doing excellent with it. I agree with Calimom 100% about the helpfulness of shared solutions. They have been great. When I first started on the medicine I was terrified about daily injections, but quickly realized it wasn't bad at all. Doesn't hurt or have side effects, maybe a slight skin reaction in the beginning. I never had the option of a clinical trial, my neuro just wanted me to choose one of the treatments quickly. I couldn't decide so I asked what she thought, she said Copaxone so I went with it. No regrets.

msmale
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 1/3/2013 2:40 PM (GMT -6)   
Thanks Nikki,
I'm so glad you chimed in here. Great news the copaxone is working good for you. Thanks for the information. My doctor dignosed me on first visit, the second visit was nothing but how i had to get on the clinical study.
At least now i know it's possible (maybe) to get the meds without being in the study. It is wonderful to have a forum like this to get info. first hand and to people that has tried the meds. Thanks so very much.
 
I wish you all best of luck.
 
Brandon

P. walkeri
New Member


Date Joined Jan 2013
Total Posts : 2
   Posted 1/9/2013 10:06 PM (GMT -6)   
I was on Copaxone but I took myself off it as it was lowering my daily quality of life and stressing me out. The swelling and itching I had was above and beyond the amount I'd been led to believe (huge, hot, red lumps 5+ inches across that itched for a week, so with the daily injection cycle, I would always have 7 of them at any given time, all over my body). I also had what they call an IPIR (Immediate Post Injection Reaction), which Shared Solutions tells you is a completely harmless reaction that "may cause temporary anxiety and shortness of breath". However, mine felt like a heart attack. I literally felt like I was going to die (not an exaggeration)-- which is consistent with others I've talked to who have actually experienced this rare Copaxone reaction. I'd had three neurologists (one general and two MS specialists) recommend Copaxone for me, so I stuck it out, but after months and months of the side effects not improving a single bit and then developing a constant paranoia about having another IPIR, I just couldn't do it anymore.

Note, however, that my reaction to Copaxone was rare-- most people do not encounter severe side effects on this particular injection. I don't want to be discouraging, just honest, as I was surprised and dismayed by my side effects after hearing so much praise over it. I feel it is important to be as informed as possible about potential effects, even rare ones.

On the plus side, the injections sting a little at first but because they're sub-q, the actual shots aren't bad at all. Most people get redness and swelling at the injection sites at first, but normally, it subsides. For me, it just kept getting worse, but I believe I am in a minority.

Shared Solutions is great though-- as they should be, given the cost burden of MS drugs! As others mentioned, they will assist you financially. They'll also assign a nurse who will pay a house visit to you to teach you how to administer the injections, and they call to check up on you every month.

msmale
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 1/13/2013 8:34 PM (GMT -6)   
Thanks P. Walkeri,
 
Sorry the copaxen was not good for you. It is really good to hear from different people and see what works for them and what doesn't. I wish you the very best.
 
I will be seeing another neurologist Mon. for a second opinion.
I think i will feel better just getting the second opinion. I just need some kind of treatment.
I'm hoping for a monthly infusion, but i guess i'll find out later. I don't like daily injections or haviing to
remember to take pills everyday.
Thanks again for the info.
 
Brandon

msmale
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 1/17/2013 9:27 PM (GMT -6)   
Hey friends,
I went for a second opinion and I'm so glad I did. The new neuro was very nice. He listen, ask questions,
and then he told me what he recommended. He suggested I take Avonex (weekly injection) and also
said he would do the paperwork to help out with the charge of the medicine so it would not cost me anything. What a blessing !
Thanks to you folks for all the great information you shared. I feel so much better now.
It was here that I found out options i didn't know i had.
 
Thanks again for all the comments. Good luck to all of you.
wink  Brandon

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3565
   Posted 1/18/2013 10:21 AM (GMT -6)   
That's great, Brandon! I wish you the best! Take two Advil an hour before you do that first shot. Do your shot in the evening. Go to bed. Try to sleep through the side effects. Keep a big glass of water and two more Advil or Tylenol so if you wake up, you can take those and go back to sleep.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

msmale
New Member


Date Joined Dec 2012
Total Posts : 8
   Posted 1/18/2013 3:03 PM (GMT -6)   
Hi Gretchen
Thanks for the suggestion. Sounds like experience talking here.
I should get started on my medication next week. I will take your advice.
Sounds good to me !  Thanks again.
 
Brandon wink
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