MY COPAXONE ALMOST KILLED ME

[kitten o]

HELLO ALL,
I TOOK MY SHOT AND 2 SEC. LATER MY LUNGS CLOSED
UP, MY BODY TURN RED HOT,SWEATING PROFUSELY,
HEART PALPERTAION, PIN AND NEEDLES IN MY  WHOLE
BODY. WE CALLED THE COPAXONE NURSE AND SHE
SAID THAT HAPPENS, MONTHS AFTER YOU START.
TODAY IT IS MY 3 MONTH ANVSERARY TALKING SHOT.
I DIDCIDED THAT I AAM NOT GOING TO TALK ANY SHOTS,
WHAT SO EVER. I ALMOST DIED TONITE.
I RATHER LET IT GO IT'S CORSE THE AND LIVE THAT WAY,
THEN TAKE SHOTS. I WILL NOT TRY ANY OTHERS.
I WISH IT SAID IT IN THE SIDE AFFECTS, I NEVER WOULD HAVE STARTED.
DOES ANYONE NOT TAKE SHOTS FOR THERE MS?
VERY SICK NOW. HAVE TO GO.  KITT

[kitten o]

THANKS AGAIN.
YOUR FRIEND KITT

[Momzilla]

HI, KITTEN!

I'M GLAD YOU'RE HERE.  YOU'RE RIGHT.  IT IS YOUR DECISION.  WE ARE HERE TO SUPPORT YOU.  I'M GLAD YOU SPOKE TO YOUR NEURO ABOUT IT, AT LEAST, AND I'M MORE GLAD THAT YOU ARE FEELING WELL.

GOOD LUCK WITH YOUR MRI.  PLEASE LET US KNOW HOW IT GOES.  KEEP US POSTED ON HOW THINGS ARE GOING!  WE CARE ABOUT YOU.  KEEP READING!

ZILLA*

[kitten o]

HELLO THERE,
I TALKED TO MY NEURO. HE IS NOT HAPPY ABOUT MY DISION, BUT IT IS MY CHOOSE.
I STOPPED MY SHOTS 2 WEEKS AGO WHEN THIS HAPPENED.
I AM DOING GREAT. I HAVE LOTS OF ENERGY. OF CAUSE I GET MY
BAD DAYS, LIKE EVERYONE ELSE.  I HAVE RESEARCH THE OTHER DRUGS AND I WILL NOT
GO ON ANY OTHER SHOTS. I THROUGHT OF THE LND, AFTER MY MRI ON THE 29 OF OCTOBER, I WILL SEE HOW PROGESSIVE I AM, THEN I WILL THINK ABOUT
MAYBE SOMETHING ELSE. BUT DIFFITLY NO SHOTS.
THANKS FOR YOU CONCERN AND PRAYS.
YOU ARE GREAT PEOPLE.  GOD BLESS KITTEN.
I AM HERE READING THE POSTS EVERYDAY.

[Momzilla]

HI, KITTEN~
I AM VERY CONCERNED ABOUT YOU!  HOW ARE YOU FEELING?  I'VE BEEN FOLLOWING YOUR POSTS ABOUT THE COPAXONE WITH WITH GREAT INTEREST AND I AM SO SORRY FOR WHAT YOU WENT THROUGH.  I CAN'T BELIEVE HOW AWFUL THAT MUST HAVE BEEN!

ALTHOUGH I CAN CERTAINLY UNDERSTAND YOU BEING SCARED RIGHT NOW TO CONTINUE YOUR TREATMENT, I AM SCARED FOR YOU TO STOP IT.  HAVE YOU DISCUSSED THIS THOUGHTFULLY WITH YOUR DOCTORS?   YOUR PCP AND YOUR NEUROLOGIST REALLY NEED TO HELP YOU MAKE THIS DECISION.  

THERE ARE SO MANY GREAT DRUGS AVAILABLE FOR MS PATIENTS NOW THAT WERE NOT AVAILABLE JUST A DECADE AGO.  PLEASE TAKE ADVANTAGE OF THEM!  I KNOW YOU HAD AN AWFUL EXPERIENCE.  I KNOW YOU DON'T WANT IT TO HAPPEN AGAIN.  WE DON'T EITHER.  WE CARE ABOUT YOU!

BUT TO STOP TREATING THIS PROGRESSIVE ILLNESS  DOESN'T MAKE GOOD SENSE, EITHER.  LDN IS PRETTY CONTROVERSIAL.  IT SHOULD BE PRESCRIBED BY A DOCTOR WHO KNOWS EXACTLY WHAT HE OR SHE IS DOING.  IT IS FOR PATIENTS WHO REALLY DO NOT HAVE ANY OTHER ALTERNATIVES, FROM WHAT I UNDERSTAND.  AS SL HAS SAID, WE HAVE SEEN DISASTROUS RESULTS FOR CAROL ON OUR FORUM.  SHE HAD A STROKE.  ON THE OTHER HAND, SIDDY TAKES IT, I BELIEVE, TOO, AND HAS HAD SOME BENEFIT FROM IT.  T-LYNN'S DOC HAS SUGGESTED IT FOR HER.  SHE HAS DONE A LOT OF RESEARCH AND IS CONSIDERING IT.

IT REMAINS CONTROVERSIAL AND I WONDER IF YOUR DOCTOR HAS SUGGESTED IT, OR IF YOU HAVE THOUGHT OF IT ON YOUR OWN.  IF YOUR DOC HAS RECOMMENDED IT, THEN I WOULD RESEARCH IT AS MUCH AS I COULD.  THERE ARE A LOT OF THINGS TO CONSIDER.  LET US KNOW, AND WE CAN HELP YOU WEIGH THE PRO'S AND CON'S.  IF YOU HAVE THOUGHT OF THIS OPTION ON YOUR OWN, I WONDER IF IT IS BECAUSE YOU HAVEN'T HEARD OF OTHER DRUGS THAT WOULD BETTER SUIT YOU.  I WONDER IF YOU ARE AFRAID OF  THE SAME THING HAPPENING TO YOU AGAIN, AND FRIGHTENING YOU SO....COULD THAT BE IT?

PLEASE, PLEASE TALK TO YOUR DOCTOR ABOUT ALL THESE OPTIONS, KITTEN.  WE WORRY ABOUT YOU.  SOMETHING AWFUL HAPPENED TO YOU THAT HAS MADE YOU LEARY OF THESE DRUGS, I THINK.  I CAN'T BLAME YOU.  BUT I WANT TO SEE YOU STAY AHEAD OF THIS DISEASE.  IT'S SO IMPORTANT!

LET US KNOW WHAT YOU'RE THINKING AND KEEP WELL.

MOMZILLA*

[sllowe]

KIT -

I believe Heather3418 has been dx'd, but not on meds. . . .just an fyi
Also, there is a couple of past threads on LDN, and, there is some extremely important info in them, ref: prior use of pain meds, stroke, etc. . .

Wishing you well,

SL

[kitten o]

THANKS TO ALL,
FOR BEING THERE FOR ME. I WOULD LIKE TO SAY I DECIDED NO MORE
SHOTS, MY MD IS TREATING MY OTHER SYMTONS, I AM DOING WELL.
GO FOR MRI ON THE 29 OF OCT.  I WILL BE IN TOUCH.
IS THERE ANYONE HERE WHO DOES NOT TAKE SHOTS?
AND WHAT IS LDN MEAN, I READ ABOUT THAT AS AND ALTURNITVE MED
FOR MS?   GOD BLESS KITTEN

[Roxie0818]

So sorry you went thru that........Im sure you were scared...just try to "relax" til you talk with doc on monday........
take care
just wanted to say Im thinking of ya
Roxanne

[kitten o]

THANKS GUYS,
I CALLED AND MY NEURO.HE IS NOT IN.
I WILL NOT TAKE ANY MORE SHOTS. I WILL WAIT TO
TALK TO MY NEURO ON MONDAY.
I AM FEELING WEAK TODAY, I GO FOR MY
MRI OF BRAIN AND C-SPINE TOMORROW SUNDAY.
I WILL WAIT TO SEE HOW IT TURNS OUT.
THANKS AGAIN. LOVE YOU GUYS.  KITT

[frann]

OH I AM SO SORRY YOU HAD A DIFFICULT TIME

U SOUND SO SCARED

I WISH I WAS THERE TO GIVE U A BIG HUG

PLEASE KNOW THAT WE ARE ALL HERE FOR U

ARE U STILL GOING FOR THE MRI ON SUNDAY?

I WILL BE PRAYING FOR YOU.

FEEL THE LOVE AND PRAYERS,

FRANN

[sllowe]

Sorry,. I transposed KIT and Heather in my text and in my . . . . . my brain damage for sure, please read the message as: To You KIT and I was seconding Heather. . . . very, very sorry.

SL

[sllowe]

OMG! How horrible.  I too, never read the info Q provided above.  It is absolutely buried!

I'm going to give a 2nd to Kit and the others, please don't give up on the DMT's, it's hard for me to say that because I was, and still am, afraid of them, but they are all we have available at this time.  And, in the not-so distant future, I believe we will be very, very close to new options.

I'm sorry you had this experience, and send you strength for your decisions.

SL

[Heather3418]

How terrifying for you!  I hope that you made a call to your Neurolgoist RIGHT AWAY.  As Quix said, this is something that can happen at anytime near the beginning of treatment.  I have also heard that it is something that has happened to others that have been on Copaxone longer.  Either way, Kitten, it warrants a call to your doctor.

Quix gave you some terrific sources of information on Copaxone.  I beg you not to give up on the treatments available for MS patients.  Maybe one of the other drugs may help you and not give you the terrible, frightening side-effects.  I know you were scared Kitten...gosh I would have been too...but this is not anything unusual with the use of Copaxone.  It can disappear as suddenly as it started.  Again, a follow-up with your Neuro and the drug company itself, might be a good idea.

Thank the Lord that you are alright...please let us know what you decide.  Hang in there, Kitten....

Heather

[kitten o]

THANKS SO MUCH , I SO SCARED .  WHAT WILL HAPPEN IF I DO NOT TAKE ANYTHING?
IS THERE A SITE I CAN READ UP ON THIS. OR DOES ANYONE HERE.
NOT TAKE MEDS FOR THERE MS?
AND HOW DO YOU FEEL?
THANKS AGAIN   KITTEN

[Quixotic1]

I LOOKED ON THE "SHARED  SOLUTIONS" COMPANY'S COPAXONE WEBSITE.  TO FIND THIS DESCRIPTION OF THE "IMMEDIATE POST-INJECTION REACTION" I HAD TO GO DOWN 4 (!!!!!!) LEVELS AND KNOW EXACTLY WHAT I WAS LOOKING FOR!  

IT ANGERS ME THAT 1 IN 8 PEOPLE WILL HAVE THIS SIDE EFFECT AND THEY BURY IT DEEP IN THEIR WEBSITE!  

SOMEONE HAD ASKED ME WHY I WOULD CHOOSE REBIF OVER COPAXONE IF THE AVONEX STOPPED WORKING FOR ME.  THE REASON WAS 1) MESSING WITH IT DAILY, 2) THIS PARTICULAR REACTION.  I HAVE ASTHMA AND I DON'T LIKE AND GET ANXIOUS WHEN MY CHEST GETS TIGHT.

HERE IS THE QUOTE FROM SHARED SOLUTIONS:

"What are the side effects associated with COPAXONE®?
The most common side effects of COPAXONE® are redness, pain, swelling, itching, or a lump at the site of injection, flushing, chest pain, weakness, infection, pain, nausea, joint pain, anxiety, and muscle stiffness. These reactions are usually mild and seldom require professional treatment. Be sure to tell your doctor about any side effects.

Some patients report a short-term reaction right after injecting COPAXONE®. This reaction can involve flushing (feeling of warmth and/or redness), chest tightness or pain with heart palpitations, anxiety, and trouble breathing. These symptoms generally appear within minutes of an injection, last about 15 minutes, and go away by themselves without further problems.

A permanent indentation under the skin at the injection site may occur, due to a local destruction of fat tissue. Be sure to follow proper injection technique and inform your doctor of any skin changes.

After you inject COPAXONE®, call your doctor right away if you develop hives, skin rash with irritation, dizziness, sweating, chest pain, trouble breathing, severe pain at the injection site or other uncomfortable changes in your general health. Do not give yourself any more injections until your doctor tells you to begin again."

*******************************************************

qUIX

[Quixotic1]

THIS FROM "RXLIST.COM"

"Immediate Post-Injection Reaction

Approximately 10% of MS patients exposed to glatiramer acetate in premarketing studies experienced a constellation of symptoms immediately after injection that included flushing, chest pain, palpitations, anxiety, dyspnea, constriction of the throat, and urticaria. In clinical trials, the symptoms were generally transient and self-limited and did not require specific treatment. In general, these symptoms have their onset several months after the initiation of treatment, although they may occur earlier, and a given patient may experience one or several episodes of these symptoms. Whether or not any of these symptoms actually represent a specific syndrome is uncertain. During the postmarketing period, there have been reports of patients with similar symptoms who received emergency medical care.

Whether an immunologic or non-immunologic mechanism mediates these episodes, or whether several similar episodes seen in a given patient have identical mechanisms, is unknown. "
****************************************************************************
THIS IS FROM WEBMD

"Copaxone SubQ Side Effects
Injection site reactions (e.g., pain, redness, soreness, and swelling) may occur. Nausea, chills, joint aches, neck pain, or headache may also occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.

Immediately after injection, you may experience flushing, chest pain, fast heartbeat, anxiety, shortness of breath, or itching. This injection reaction usually stars to occur after you have used the drug for a few months but can occur after any injection. These symptoms disappear fairly quickly and usually do not require treatment. If these symptoms do not go away in a few minutes, seek immediate medical attention. Tell your doctor immediately about this reaction before your next injection. Ask your doctor if you should continue using this medication."

*******************************************************

THIS IS FROM THE NATIONAL MS SOCIETY WEBSITE - UNDER THE DISCUSSION OF TREATMENTS

"Possible Side Effects
Side effects that generally resolve on their own and do not require medical attention unless they continue for several weeks or are bothersome: injection-site reactions (e.g., swelling, the development of a hardened lump, redness, tenderness, increased warmth of the skin, itching at the site of the injection); runny nose; tremor*; unusual tiredness or weakness*; weight gain.

Unusual side effects that should be discussed as soon as possible with your doctor: Hives (an itchy, blotchy swelling of the skin) or severe pain at the injection site.

Possible immediate post-injection reaction: Approximately 13% of individuals using Copaxone will experience, at one time or another, a transient (very temporary) reaction immediately after injecting glatiramer acetate. This reaction, which usually occurs only once, includes flushing or chest tightness with heart palpitations, anxiety, and difficulty breathing. During the clinical trials, these reactions occurred very rarely, usually within minutes of an injection. They lasted approximately 15 minutes and resolved without further problem. "
**************************************************************************

I CUT AND PASTED THESE QUOTES.  I HOPE YOU CAN READ THEM OR HAVE SOMEONE READ THEM TO YOU.

SO SORRY YOU'RE GOING THROUGH THIS.  I'M SURE IT TERRIFIED YOU!

QUIX

[6-paq]

I'M SO SORRY YOU HAD THAT EXPERIENCE!!!  I CAN'T IMAGINE HOW FRIGHTENING THAT WAS FOR YOU!

I HAVE ALSO READ ABOUT THAT WITH COPAXONE.   I AM NOT DIAGNOSED YET, BUY MY NEURO HAD MENTIONED USING COPAXONE WHEN I GET THAT DX.   I AM AN ASTHMATIC AND THAT'S ONE SIDE EFFECT THAT WOULD HAVE ME VERY WORRIED AS YOUR REACTION REMINDS ME OF AN ASTHMA ATTACK.

PLEASE CALL YOUR NEURO AND INFORM HIM OF YOUR REACTION.

PRAYERS FOR YOU!
TAKE CARE!  PAT :)

[kitten o]

I CAN NEVER GO THREW IT AGAIN, I AM NOT THAT STRONG.
THANKS FOR YOUR HELP.   KITT

[Quixotic1]

THAT IS THE REACTION MOST TALKED ABOUT IN THE LITERATURE ON COPAXONE.  I WILL FIND SOME INFORMATION ON IT.  IT IS USUALLY A SHORT, 15 TO 30 MINUTES OF JUST WHAT YOU DESCRIBED.  IT APPARENTLY IS FRIGHTENING, BUT HARMLESS.  I WISH YOU HAD KNOWN ABOUT IT.  I HAVE HEARD THAT OTHER PEOPLE HAVE STOPPED THE COPAXONE FOR THIS REASON, OTHERS JUST TOUGH IT OUT, KNOWING THAT IT WILL PASS.

YOU FEEL AWFUL, ANGRY AND FRIGHTENED RIGHT NOW, SO I UNDERSTAND YOU NOT WANTING TO DEAL WITH ANY MEDS.  BUT, WE CAN TALK ABOUT THE OTHER MEDS LATER.  YOU NEED TO CALL YOUR NEUROLOGIST TOMORROW AND TELL HIM AND ASK TO DISCUSS THIS.  HE SHOULD HAVE TOLD YOU ABOUT THIS.  I KNEW ABOUT IT AND I HAVE DONE VERY LITTLE READING ON COPAXONE.

I'LL GO LOOK UP SOME INFO AND BE BACK.  I'M SO SORRY THIS HAPPENED AND TOOK YOU BY SURPRISE.

QUIX