Just don't know what to do anymore.... I hate this body, I hate this life

[alliesmommy]

Hello Everyone

My apologies for the long thread.

I was dx in 2011 and started Betaseron right away. I was on it for 4 years and struggled whether or not I should go off of it because I was stable and no relapse but I felt like I had the flu every.single.day.

My Neuro and I decided I should go off of it and try Copaxone since it's not an interferon. I've been on it now since April and have had no problems except for a slight stinging/itching that went away after about 10 mins. Then BAM. About a month ago, I got the dreaded side effect. The ear/neck/face flushing that felt like my whole head was on fire, and the shortness of breath. My husband was ready to call 911 but I knew about this and told him to wait even though I was scared out of my mind.

Since that time, I have had a reaction similar to that almost every time I have taken it, but last nights was the worst yet. I had all the flushing, shortness of breath but now the shortness of breath was way way worse and I felt nauseous and had tingling in my hands and face and felt like I was going to pass out. After it subsided, I had severe chills which I've never had before.

I refuse to accept that this is the way I have to live and I refuse to stop and let MS ravage my body. So I'm stuck. I'm stuck in the middle of this personal prison.

And it's not just MS. It's Diabetes, ulcerative colitis and now possible Uterine Cancer. Oh, the joys of it all. I have moments when I think I should just fight and then there are times when I feel like why? Why should I fight? I'm not going to live that long anyway, so why? If I'm being honest, I've thought about ending things more times than I care to admit, but I don't really believe that I could actually do it. I mean what would people think of me?

It's hard for other people to understand what it is this brother/sisterhood feels like and goes thru on a day to day basis. That's why I just needed to write the words down, just to get the down and out of this crazy body of mine.

If you've managed to read this entire thing, Thank you! honestly

[GinnyRuth]

I read it all

Good grief as if diabetes and UC wasn't enough and maybe cancer? That is a lot to handle. But I think if it were me, I would try a different MS drug. This one sounds horrible for you and side effects not getting better but worse. I hope that things will improve for you very soon.

Hello Everyone

My apologies for the long thread.

I was dx in 2011 and started Betaseron right away. I was on it for 4 years and struggled whether or not I should go off of it because I was stable and no relapse but I felt like I had the flu every.single.day.

My Neuro and I decided I should go off of it and try Copaxone since it's not an interferon. I've been on it now since April and have had no problems except for a slight stinging/itching that went away after about 10 mins. Then BAM. About a month ago, I got the dreaded side effect. The ear/neck/face flushing that felt like my whole head was on fire, and the shortness of breath. My husband was ready to call 911 but I knew about this and told him to wait even though I was scared out of my mind.

Since that time, I have had a reaction similar to that almost every time I have taken it, but last nights was the worst yet. I had all the flushing, shortness of breath but now the shortness of breath was way way worse and I felt nauseous and had tingling in my hands and face and felt like I was going to pass out. After it subsided, I had severe chills which I've never had before.

I refuse to accept that this is the way I have to live and I refuse to stop and let MS ravage my body. So I'm stuck. I'm stuck in the middle of this personal prison.

And it's not just MS. It's Diabetes, ulcerative colitis and now possible Uterine Cancer. Oh, the joys of it all. I have moments when I think I should just fight and then there are times when I feel like why? Why should I fight? I'm not going to live that long anyway, so why? If I'm being honest, I've thought about ending things more times than I care to admit, but I don't really believe that I could actually do it. I mean what would people think of me?

It's hard for other people to understand what it is this brother/sisterhood feels like and goes thru on a day to day basis. That's why I just needed to write the words down, just to get the down and out of this crazy body of mine.

If you've managed to read this entire thing, Thank you! honestly

[alishape]

Small bonus maybe?

You may have a few more options now. Lots of times ins cos will not approve people trying alternative/newer medicines without proof of complications with more widely subscribed medicines. I am taking tecfidera now, but only because I was having reaction from copax injections.

[Tia1]

this sounds like a life threatening allergic reaction. Please don't take this me again without talking to your doctor first.

You should definitely try a different medication, once you get stabilized you may be able to enjoy life again.

I will be praying for you! Hang in there, things can improve.

[palmtree]

It's not all hopeless. There are many DMTs that your doctor could help guide you towards. This might be a blessing because the interferons and Copaxone only slow MS progression 30%, Tysabri 75%.

Your reaction definitely sounds like you have developed an allergy to Copaxone. The more you use it, the more sensitized you get. If it turns out you must use it you will need an Epi Pen to give yourself another injection. That is what they use for anaphylactic shock.

[Deela]

How scary. Sounds like an allergic reaction. I had a very bad reaction to tecifidera and was told to stop using it immediately. There are other DMD's out there that won't leave you feeling ill after taking it.

For 2.5 years I took Avonex experiencing some form of flu like symptoms each week. Currently, just had my 6th tysabri infusion with zero side effects. You just need to find the one that works for you.

Call your doctor and explain what happened. If you don't feel comfortable taking it anymore then tell the dr. It is your choice to continue, not theirs.

Good luck!

[KatieAgain]

Sounds like you definitely have had an IPIR, which happens with Copaxone. More than one in a row is a reason to call your Neuro.

You have so much more on your plate in addition to the MS. I would call the Neuro to discuss drug options and get that bugger off your plate. Many more options out there.

I hope Uterine Cancer is not in your future. I also think many of us have brief thoughts of checking out, but we don't, and it sounds like you are a fighter.

[pennstater]

Hi Alliesmommy,

You really have had a rough road and I admire your strength in dealing with it to date. I don't have any advice that hasn't been given, but you definitely need to call your neuro. I am sure the ulcerative colitis has to be considered in your DMT choices, but you should evaluate other options.

Sending hugs and prayers your way. I do hope that it is a cancer scare and not a reality.

Please let us know how you are feeling and keep us in the loop when you can.

[randrk]

Have you tried ldn?

[QUOTE=alliesmommy;1483982]Hello Everyone

My apologies for the long thread.

I was dx in 2011 and started Betaseron right away. I was on it for 4 years and struggled whether or not I should go off of it because I was stable and no relapse but I felt like I had the flu every.single.day.

My Neuro and I decided I should go off of it and try Copaxone since it's not an interferon. I've been on it now since April and have had no problems except for a slight stinging/itching that went away after about 10 mins. Then BAM. About a month ago, I got the dreaded side effect. The ear/neck/face flushing that felt like my whole head was on fire, and the shortness of breath. My husband was ready to call 911 but I knew about this and told him to wait even though I was scared out of my mind.

Since that time, I have had a reaction similar to that almost every time I have taken it, but last nights was the worst yet. I had all the flushing, shortness of breath but now the shortness of breath was way way worse and I felt nauseous and had tingling in my hands and face and felt like I was going to pass out. After it subsided, I had severe chills which I've never had before.

I refuse to accept that this is the way I have to live and I refuse to stop and let MS ravage my body. So I'm stuck. I'm stuck in the middle of this personal prison.

And it's not just MS. It's Diabetes, ulcerative colitis and now possible Uterine Cancer. Oh, the joys of it all. I have moments when I think I should just fight and then there are times when I feel like why? Why should I fight? I'm not going to live that long anyway, so why? If I'm being honest, I've thought about ending things more times than I care to admit, but I don't really believe that I could actually do it. I mean what would people think of me?

It's hard for other people to understand what it is this brother/sisterhood feels like and goes thru on a day to day basis. That's why I just needed to write the words down, just to get the down and out of this crazy body of mine.

If you've managed to read this entire thing, Thank you! honestly[/QUOTE

Hi. You say you went on betaseron as soon as diagnosed, so I assume you haven't tried anything else.

I've been gung-ho on ldn (low dose naltrexone) and urge everyone who can, to try it along with a healthy diet and exercise. It doesn't work for everyone but worth a try.

Research ldn and ask your doctor about it. If he advises against trying, get a new doctor and try anyway.

You can read my story at "new guy" in the welcome thread or in Questions...

Good luck.

[emc1]

I have been using Copaxone for about 6 years, changing to the 40 mg about a year ago. About 3 months ago I experienced my first adverse side effect as you did. I thought I was having a heart attack. I consulted with my Dr. they suggested that perhaps I injected it accidently into a vein. I feel that I injected the medication correctly. I tried Avonex in 2007 but quickly stopped it because of the "flu like symptoms". I work full time as a nurse and could not be down sick all the time. I am sorry you are going through all of this. I would talk with your Dr. for other options. Do not give up.

[GinnyRuth]

Randrk

Please see her second paragraph, it explains how it was the Copaxone that gave her problems.



[QUOTE=randrk;1484040]

Hello Everyone

My apologies for the long thread.

I was dx in 2011 and started Betaseron right away. I was on it for 4 years and struggled whether or not I should go off of it because I was stable and no relapse but I felt like I had the flu every.single.day.

My Neuro and I decided I should go off of it and try Copaxone since it's not an interferon. I've been on it now since April and have had no problems except for a slight stinging/itching that went away after about 10 mins. Then BAM. About a month ago, I got the dreaded side effect. The ear/neck/face flushing that felt like my whole head was on fire, and the shortness of breath. My husband was ready to call 911 but I knew about this and told him to wait even though I was scared out of my mind.

Since that time, I have had a reaction similar to that almost every time I have taken it, but last nights was the worst yet. I had all the flushing, shortness of breath but now the shortness of breath was way way worse and I felt nauseous and had tingling in my hands and face and felt like I was going to pass out. After it subsided, I had severe chills which I've never had before.

I refuse to accept that this is the way I have to live and I refuse to stop and let MS ravage my body. So I'm stuck. I'm stuck in the middle of this personal prison.

And it's not just MS. It's Diabetes, ulcerative colitis and now possible Uterine Cancer. Oh, the joys of it all. I have moments when I think I should just fight and then there are times when I feel like why? Why should I fight? I'm not going to live that long anyway, so why? If I'm being honest, I've thought about ending things more times than I care to admit, but I don't really believe that I could actually do it. I mean what would people think of me?

It's hard for other people to understand what it is this brother/sisterhood feels like and goes thru on a day to day basis. That's why I just needed to write the words down, just to get the down and out of this crazy body of mine.

If you've managed to read this entire thing, Thank you! honestly[/QUOTE

Hi. You say you went on betaseron as soon as diagnosed, so I assume you haven't tried anything else.

I've been gung-ho on ldn (low dose naltrexone) and urge everyone who can, to try it along with a healthy diet and exercise. It doesn't work for everyone but worth a try.

Research ldn and ask your doctor about it. If he advises against trying, get a new doctor and try anyway.

You can read my story at "new guy" in the welcome thread or in Questions...

Good luck.

[randrk]

pardon?

[QUOTE=GinnyRuth;1484096]Please see her second paragraph, it explains how it was the Copaxone that gave her problems.



Sorry. What am I supposed to see in the second paragraphy?

[Mamabug]

Sorry. What am I supposed to see in the second paragraphy?

The first two paragraphs are short. I suspect that Ginny means the paragraph, where it talks about the "flushing" side effect. Just scroll down a little further.

[Beachcomber]

To help prevent a Copaxone IPIR (Immediate post-injection reaction):

After the needle enters the body, gently pull up the plunger a little bit to check for blood:
* If any blood is seen anywhere (skin, needle, mixed w/ medicine inside shot), withdraw the needle from the body, and choose a new location in which to inject. Ask your nurse/doctor if a new shot should be used for each attempt. My doctor said that since I first always disinfected the shot area, I could re-use the same shot.
* If blood is not seen, press down on the plunger to inject medicine.

[wolflover]

I believe I can relate to your situation!!

alliesmommy,

I know this was written last year but I've been trying to find someone that might have experienced what I have as well. I started on Rebif but had flu like symptoms and needle phobia so I did not fair well. Then I was on gylenia for awhile but kept having flares. Enough that my doctor changed me.

Then I got remarried, without really knowing what a narcissistic ex wife is capable of. But my husbands ex wife has attempted 7 restraining orders and court about every 3 months and several tens of thousands of dollars later she has caused so much deep seeded stress that since I got remarried, just last year in April, I now am on Abaugio. It has caused moderate hair thinning but it is starting to come back. I have been diagnosed with Ulcerative Colitis, neurogenic bladder and now hydronephrosis. I got hit with such a bad flare that I can no longer work as an RN due to numb hands, painful upper arms and shoulders, severe fatigue, memory issues, vertigo and difficulty speaking clearly. Oh and did I mention, anxiety and depression disorder.

I know how you felt about is it worth just watching yourself go to crap and in such a painful manner. Not having control over your own body. Now shifting blame onto my husband. I know it is not his fault but I wonder if i would be better off on my own. But what keeps me fighting everyday, despite how i feel are my 3 beautiful children. On top of all of this I also lost my mother on Mother's Day this year. She had several illnesses but oddly, none of the same. So yes, I think of ending it everyday and then my children pop in my head and I want to be there to watch them graduate, get married, become parents themselves and now after losing my mom, realizing how important it is to have your mother there for all those wonderful things in life. I just might have to go back to being single so I can survive it. Not sure how much more I can take.

Thank you for sharing your story. Knowing you're not the only one out there gives you a little relief.