Thinking About Going Off Copaxone

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Thinking About Going Off Copaxone

Postby SpringsJessica » Sat Jan 07, 2012 3:37 pm

:?: I'm wondering if anyone has experience going off Copaxone. If it can be stopped immediately or if I will need to taper off? I could call Shared Solutions (SS), but don't think I'll get a positive answer since I'm wanting to end this treatment. I will be calling my neurologist on Monday, I'm just not sure I can do another injection.

I am having terrible ISRs that are increasingly getting worse the longer I'm on Copaxone. :sad: I am left with huge welts that are approximately 1/2" deep and 3" around, they are red, hot, painful, and are lasting longer as time goes on. I still have a nodule approximately 1.5" in diameter from an injection 8 days ago, it is still hot, red, and painful. The autoinjector terrified me, so I have only done manual injections. I take approximately 30-40 minutes of "me" time to go through the process of warming the injection site area, swabbing with alcohol, allowing it to dry completely, injecting slowly (usually to a count of 20), holding a cotton ball on the IS for a full minute, if not 2, and 20 minutes of cold therapy.

I have been told by SS to gain weight because I don't have enough body fat. :-?? I'm trying but not getting very far since I'm on a modified diet. I'm also a runner. My neurologist has offered Rebif as an alternative, but refuse to use interferon. I am depressed, which is extremely unusual for me. Tearfulness is increasing daily. I dread even thinking about doing my injection each day and it is becoming harder and harder to convince myself that I am "blessed" that there is a treatment such as Copaxone available to me.

I had surgery on my foot in early December and was assured that the Copaxone would not effect my ability to heal. And while the surgery site healed well, I have not been well for 3 weeks, alternating from a chest cold, to a migraine lasting 7 days, and back to a chest and head cold. :YMSICK:

:D So, today I've been reviewing my dietary and supplement options. My two exacerbations were 5 years apart and the results, though scary and frustrating, were relatively minimal. My brother is currently on the Swank Diet to manage his MS and I'm REALLY leaning that way. I have never done well with traditional medicine and have most often turned to alternative medicine to treat my ailments (FMS, migraines, loss of appetite, etc) and since being on the Copaxone I feel like I don't know my own body anymore.

Sorry for such a long post, just wanted to clarify where I'm at with things.
Last edited by SpringsJessica on Sat Jan 07, 2012 8:46 pm, edited 1 time in total.
Jessica
Supplements Vit D3 6,000 IU/Cal 1000 mg/Mag 500 mg/Tumeric 400 mg/Probiotics
Amalgam Fillings Removed/Chelated 10.10.11
Copaxone Tx Started 9.27.11/Off 01.13.12/On 01.18.12
Dx RRMS 08.28.11
Gluten Free 03.10
Sugar Free 02.02
Brother Dx RRMS 08.01
User avatar
SpringsJessica
Getting to Know You...
 
Posts: 16
Joined: Sat Jan 07, 2012 2:16 pm
Location: Colorado Springs, CO

Advertisement

Re: Thinking About Going Off Copaxone

Postby shaight » Sat Jan 07, 2012 5:41 pm

the only thing i can offer is that my good friend just stopped copaxone with no issues.

best of luck moving forward!
shaight
Family Elder
 
Posts: 136
Joined: Fri Apr 29, 2011 3:00 pm
Location: NH USA

Re: Thinking About Going Off Copaxone

Postby Froggie » Sat Jan 07, 2012 8:25 pm

I was on Copaxone for nine months and did not have any problems when I stopped it. I switched to Rebif, as I was a non-optimal responder to the Copaxone. If I remember correctly, I did my final Copaxone injection and started the Rebif the next day. I was in the midst of a relapse at that time, which was frequent while on the Copaxone. I also had big welts that cropped up hours post injection and stay itchy and painful. I felt like I was using gallons of cortisone cream and taking lots of Benadryl to lessen the itching! I know others have had the same problem. I've had few skin problems with the Rebif and the flu-like symptoms associated with Interferon's have lessened over time.

I tend to take a holistic approach to my health, but I decided to use every possible tool in my arsenal to fight this disease. Just keep an open mind and find what works for you.
User avatar
Froggie
Family Elder
 
Posts: 114
Joined: Thu Apr 15, 2010 3:00 pm
Location: Ohio

Re: Thinking About Going Off Copaxone

Postby SpringsJessica » Mon Jan 09, 2012 9:47 am

I've decided to think about my options some more. Ironically, the last two shots I gave myself weren't as bad as they've been. I guess I kind of got a second wind to keep trying. Hoping this weeks injections aren't as bad as last weeks...

Thanks for the replies!
Jessica
Supplements Vit D3 6,000 IU/Cal 1000 mg/Mag 500 mg/Tumeric 400 mg/Probiotics
Amalgam Fillings Removed/Chelated 10.10.11
Copaxone Tx Started 9.27.11/Off 01.13.12/On 01.18.12
Dx RRMS 08.28.11
Gluten Free 03.10
Sugar Free 02.02
Brother Dx RRMS 08.01
User avatar
SpringsJessica
Getting to Know You...
 
Posts: 16
Joined: Sat Jan 07, 2012 2:16 pm
Location: Colorado Springs, CO

Re: Thinking About Going Off Copaxone

Postby LadyDoe » Wed Jan 11, 2012 3:16 am

I stopped copaxone after finding out I was asymptomatic for a chronic bacteria implicated in MS. Chalmydia Pneumoniae. You can look it up under 'antibiotics'. I was always a healthy person, however childhood asthma and respiratory infection prior to 1st MS relapse made me think something more sinister was the cause.

Since stopping copaxone - almost 1 yr - I have not relapsed.
... if it's going to be, it's up to me ... :)
User avatar
LadyDoe
Family Member
 
Posts: 28
Joined: Sat Jan 16, 2010 4:00 pm

Re: Thinking About Going Off Copaxone

Postby SpringsJessica » Sat Jan 14, 2012 2:49 pm

As of yesterday, I have decided to go off the copaxone. My brother and I are going to work on a plan to work together based on the research we've both done.
Jessica
Supplements Vit D3 6,000 IU/Cal 1000 mg/Mag 500 mg/Tumeric 400 mg/Probiotics
Amalgam Fillings Removed/Chelated 10.10.11
Copaxone Tx Started 9.27.11/Off 01.13.12/On 01.18.12
Dx RRMS 08.28.11
Gluten Free 03.10
Sugar Free 02.02
Brother Dx RRMS 08.01
User avatar
SpringsJessica
Getting to Know You...
 
Posts: 16
Joined: Sat Jan 07, 2012 2:16 pm
Location: Colorado Springs, CO

Re: Thinking About Going Off Copaxone

Postby NHE » Sun Jan 15, 2012 2:47 am

SpringsJessica wrote:As of yesterday, I have decided to go off the copaxone. My brother and I are going to work on a plan to work together based on the research we've both done.

________________
Supplements Liquid Vit D3 6,000 IU/Cal 1000 mg/Mag 500 mg/Tumeric 400 mg/Probiotics


You might want to check into some zinc for your regimen. It will help increase your body's utilization/absorption of vitamin D3. Speaking of which, don't forget to get your levels tested every so often so you don't over do it, 150 nmol/L (60 ng/mL) is a good target level. Hypercalcemia is a risk when levels get near 250 nmol/L (100 ng/mL). By the way, regarding turmeric, you might also want to look into one of the newer BCM-95 curcumin supplements as they have much greater absorption. Here's one product example http://www.supersup.com/life-extension- ... 7870407065 We had a discussion about this at natural-approach-f27/topic18585.html

NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3333
Joined: Sat Nov 20, 2004 4:00 pm

Re: Thinking About Going Off Copaxone

Postby SpringsJessica » Sun Jan 15, 2012 7:53 pm

AWESOME NHE I will check the links and get tested! :)
Jessica
Supplements Vit D3 6,000 IU/Cal 1000 mg/Mag 500 mg/Tumeric 400 mg/Probiotics
Amalgam Fillings Removed/Chelated 10.10.11
Copaxone Tx Started 9.27.11/Off 01.13.12/On 01.18.12
Dx RRMS 08.28.11
Gluten Free 03.10
Sugar Free 02.02
Brother Dx RRMS 08.01
User avatar
SpringsJessica
Getting to Know You...
 
Posts: 16
Joined: Sat Jan 07, 2012 2:16 pm
Location: Colorado Springs, CO

Re: Thinking About Going Off Copaxone

Postby milesap » Mon Jan 16, 2012 8:07 am

User avatar
milesap
Family Elder
 
Posts: 146
Joined: Wed Jul 20, 2011 3:00 pm

Re: Thinking About Going Off Copaxone

Postby JoeAnon123 » Tue Jan 17, 2012 10:10 am

When you were injecting, were you pinching your skin when applying the injection? It seems to work well for my wife.
User avatar
JoeAnon123
Newbie
 
Posts: 3
Joined: Thu Mar 17, 2011 4:00 pm

Re: Thinking About Going Off Copaxone

Postby SpringsJessica » Thu Jan 19, 2012 9:31 am

Joe, yes I was/am pinching. Just don't seem to have enough body fat.

Incidently, I went off the copaxone for 6 days. Within 4 I had lost some language function, my hands felt like they had rubber bands around the wrists, my stomach was itchy, and I was so exhausted at the end of the day I was in bed at 7:30 with the lights out. I started back up last night. I have to say (and maybe this was a lesson I needed to learn) the copaxone was working for me, despite how bad the injections hurt and the bruising I'm left with week after week, I want to maintain as much healthy functioning as possible for as long as possible. Clearly the copaxone was working well for me.
Jessica
Supplements Vit D3 6,000 IU/Cal 1000 mg/Mag 500 mg/Tumeric 400 mg/Probiotics
Amalgam Fillings Removed/Chelated 10.10.11
Copaxone Tx Started 9.27.11/Off 01.13.12/On 01.18.12
Dx RRMS 08.28.11
Gluten Free 03.10
Sugar Free 02.02
Brother Dx RRMS 08.01
User avatar
SpringsJessica
Getting to Know You...
 
Posts: 16
Joined: Sat Jan 07, 2012 2:16 pm
Location: Colorado Springs, CO

Re: Thinking About Going Off Copaxone

Postby ariehs » Fri Jan 27, 2012 12:10 pm

I was on Copaxone briefly. I dropped it when it became clear that it not only wasn't helping symptoms, but it wasn't slowing my relapses. It was annoying to take, and I was having a LOT of site-reactions, but it was knowing that it wasn't helping that made the decision easy.

If it's working for you at all then it's a harder decision.

Tysabri is doing wonders for me. I'm amazed.
User avatar
ariehs
Family Member
 
Posts: 82
Joined: Sun Nov 22, 2009 4:00 pm
Location: Montreal

Re: Thinking About Going Off Copaxone

Postby JellyfishAnna » Thu Apr 19, 2012 6:27 am

Hi everyone,
I am new to this site but came on it because of the "going off Copaxone" thread.
Diagnosed RRMS Nov 09, three relapses since. On Copaxone Aug 11. My brother also has it, diagnosed about 18 yrs ago. He's not on anything and quite well with it.
Thinking about going off Copaxone as not only have I put on masses of weight but also finding it increasingly hard to find easy sites for the injections.
Questions for Jessica - are you affected in the same way as your brother? Are you back on Copaxone again? Have you tried LDN as well? How do you find your dietary changes? Sorry for all the questions! Would really appreciate any insights!
Many thanks.
Anna
JellyfishAnna
Newbie
 
Posts: 1
Joined: Thu Apr 19, 2012 6:17 am

Re: Thinking About Going Off Copaxone

Postby joshms » Tue Jan 14, 2014 11:51 pm

I know this thread is over a year old, but I just stumbled on it while looking for something different. I have been on Copaxone 19 months. I understand ISR, but have been fortunate that they have not been as bad as yours. I found injecting in my arms and legs to be quite painful as I have very little body fat. The nurse that SS sent out thought I was a runner.

I found that injecting in the love handles, and up the sides and then about two inches towards the front works best for me. That is where I have the most loose skin. Basically I inject 5 sites up and down by 3 sites left to right on each side. This gets me about a month before repeating anywhere. If I get too close to the center of the stomach where there is more muscle it hurts more and I get worse ISR which for me manifest in firm spots for a week or so.

Pinching where there was muscle didn't do it. I have very little fat. Pinching and injecting where there is loose skin is what works best for me.

I have been fortunate to be a copaxone responder (after the first 6 months) with manageable ISR. I wish you well an hope that a year and a half later you are doing much better.
joshms
Newbie
 
Posts: 1
Joined: Tue Jan 14, 2014 11:43 pm


Return to Copaxone

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service