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Avatar universal

For all on Copaxone

Hi all.  I haven't posted in quite a while and there are alot of members who won't recognize me.  I was diagnosed with MS in December, and have been on Copaxone for about six months.

This is info for members on Copaxone.  I seem to be having pancreatitis, which is inflamation of the pancreas.  It is a possible side effect of Copaxone, although not very common.  I have been seeing a gastro; and he suggested going off the med for a week or so to see if it resolves.  I am bummed, because I have tolerated it very well.

So, if anyone else taking this med experiences what feels like burning pressure in the stomach area, maybe worse after eating, stomach pain, weight loss etc., it may be worth looking into.  I have had an endoscopy and ultrasound of abdomen and all are fine.  Even my pancreas looks fine, but that may or may not be the case, so says the gastro.

God bless you all,

Amy
19 Responses
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Avatar universal
I'm so sorry to hear all of these terrible stories about Copaxone and pancreatitis.  I have had the same problem which is why I came accross this site tyring to find info.  I started getting symptoms of acute pancreatitis after I'd been taking Copaxone for almost two years.  I didn't see the connection at first but did end up going off the copaxone.  The problem is I am left with what seems to be a chronic pancreatic insufficiency so i have trouble digesting food, especially fats and am losing weight.  I to feel really annoyed that there was no warning about this possbile side effect from my Neurologist.  I wonder if a lot of people start suffering form these things and don't realise the connection because it can start after you've been on copaxone for some time.  And how can you prove it was the copaxone?? I do remember having nausea and stomach pain from the very beginning though, but it passed after a while, and as you say - the pancreatitis episodes come and go a lot...
Helpful - 0
Avatar universal
Sorry to hear of your Pancreatitis issues with Copaxone. My wife has MS, used Copaxone developed acute pancreatitis and her pancreas ruptured a few days later. She spent 1 month in ICU on life-support and now has MULTIPLE problems from that episode. This happened around 2-1/2 years ago. We received a letter from Copaxone saying they saw her pancreas had ruptured and she now has acute pancreatitis. The info they shared in the letter told us it is now considered a side effect of the medicine. How Copaxone got my wife's PERSONAL medical records, when the patient has a HARD time getting them due to HIPPA laws, we can't figure that out. But we ARE looking for a GOOD medical attorney to look into this case. I mean I was making final arrangements for my wife--she was that bad. It took a good 1-1/2 to partially recover and she'll NEVER be the same. We have been married 25+ years and I want MANY more. Let me know if you come accross anymore info related to this topic. I don't want to scare you with our story, just make sure other users are aware of the possible complications.
Andy
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7603381 tn?1392498729
I've been on copaxone for two months in the last 2 1/2 weeks i have had bad stomach pain mostly at night but it seems like it may be causing constipation. because when i use the bathroom it feels alittle better.  I'm waiting to see my doctor. Has anyone experienced similar effects. any suggestions.
Helpful - 0
198419 tn?1360242356
Hi Logan!

Welcome! You found an older discussion on Copax which is great! But, if you find our members don't see your message here - please copy it and then past it in "post a question" (green button).

That way we can welcome you properly and address your post. I've not experience w/Copax, but we do have members on it. Rapid weight loss is not good! Does your treating Dr. know this?

Thanks for joining us!
-shell
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Avatar universal
I just joined this forum today. Was diagnosed with MS on April 9 of this year and immediately prescribed Copaxone. Two days after starting Copaxone I began having stomach pain/nausea/diarrhea, and it has continued for weeks. I recognize my symptoms in some of the comments -- worst in the morning, sometimes better during the day, but sometimes not. It has not been a long time for me, so I am wondering if I will get used to it? But I am losing weight rapidly and feel horrible. I understand it is better than the alternative (MS deterioration), but this is much harder than I anticipated.
Helpful - 0
198419 tn?1360242356
Hi Amyloo!

Wow, glad you've let us know.  I wish too, this were not so.  Is there anything they can do to confirm this? Or, is it just that you go off of it, and see if the problem resolves?

It's the rare stuff that is not so recognized, but what should be absolutely out in the open.
What were your symptoms of this pancreatitus? Are you in pain?

Welcome Connie! Please if you feel comfortable, post your story.....glad you've joined.

-Shelly
Helpful - 0
567529 tn?1216692348
oops i 4got to answer, yes i am on copaxone.
I have been for a little over 2 years,
Helpful - 0
567529 tn?1216692348
Thanks bunches for telling me about this site also.
This is connie from the fibo site.
Wow lots of graet info here.
Thanks again:)
Helpful - 0
Avatar universal
Hi Quix,

How odd that you mention this.  I just checked my bloodsugar and it is 170.  I ate about two hours ago and my heart has been pounding.  (my daughter is a type one, so we have lots of those sugar checkers around.)  This happened to me on Saturday after a big high carbo "chip fest" too.  I am set to check my fasting sugar tomorrow am, but do you have any other ideas or thoughts?  Love, Amy
Helpful - 0
147426 tn?1317265632
It is good to see you, but now with such news.  I am hoping that you are starting to feel better - well sort of - I hate to think that a med that was clearly helping is something you have to stop.  On the other hand pancreatitis is a lot of no fun.

Just a thought - kind of out of the blue - There is a close association between MS and Type I Diabetes.  Are they watching your insulin output or your glucose tolerance?   The Islet Cells which produce insulin are embedded in the pancreas.  Sometimes, with a pancreatitis the inflammation does involve the Islet Cells and you can become a Type I diabetic.

The Gastro may or may not know of this association.  If you want me to give you some cites to studies on the association just let me know.  Okay?

Quix
Helpful - 0
Avatar universal
I dont blame you for not wanting to leave copaxone. when i saw my first mri reading i was shocked at all the white spots on my brain, lots of small ones and a few large ones. my second reading showed more small ones after being on copaxone for almost a  year. but my third mri after a year and half on copaxone  didnt show any new ones. so it is working for me. things have slowed down a bit. giving the shot everyday is a bummer, but you get used to it and i figure if it works its worth it.  

i will try to eat more carbs and lay off the protien and see if that helps. i dont eat a lot of fatty foods already tend to steer away from those. my downfall is ice cream, that really does a number on me so i limit that.  no fun.....  

sue
Helpful - 0
Avatar universal
Hi Sue,

Yes, it waxes and waines.  My gastro said to eat a high carb low fat/protien diet for a whle too.  The pancreas (and gallbladder) produce enzymes when we eat and they can process carbs a whole lot easier than fat and protien is my understanding.

I will keep you posted on this; I truly don't want to go off Copaxone.  I really think it is helping me.  If you get in a lot of pain try lying on your left side, curled up.  For me this seems to reduce the pressure on whatever is going wonky.  Love to you and God bless you too, Amy
Helpful - 0
Avatar universal
Thank you for getting back to me.  i will most certainly speak with my dr about this, because i too have gone the gamet of abdominal ultra sounds, upper and lower and also ct scan all were normal except showing that i seem to have alot of gas in my intestinal track. i thank god for this site, otherwise i would be just assuming all is m.s. related and just go about my days feeling sick.  it gets so bad sometimes i dont want to leave the house. i have also lost almost six pounds in past two weeks. (which i was really quite happy about) .  one last question for you; did this come and go for you? by that i mean were you feeling really sick for a couple weeks and then pretty normal for a while and then it would hit you again?  this seems to be what is going on with me, when i feel bad, it's bad. right now i am feeling pretty good, but it's like a timebomb you just don't know when it's gonna hit ya.  

thanks again, and God bless

Sue  
Helpful - 0
Avatar universal
Thank you ladies for such nice comments.  Lover of dogs:  (which I am too!)  Yes, this is exactly what I have experienced.  I have had diahrea as well (sometimes like water; gross sorry) and now have started to see oil with my diahrea as well.  (again, gross, sorry.)  This is a sign that your body is not able to process food (fats) and is not good.  I dropped four pounds in about a week and a half. Your pancreas is behind your stomach, center right of your sternum.  Can you put pressure there with your hand or does it bother you/hurt?  Tell your dr. what is going on.  I haven't had copaxone since Monday, today is Friday and I am still having difficulties.  Will keep you posted.

Cjacks:  Yes, I will definately say Copaxone helps.  It took about four months but I know it has helped.  Specifically, my attitude and energy levels, and my mobility.  I have no other side effects (and I don't even know if my pancreas is indeed affected.)  So I am very prayerfull/hopeful that I can continue with Copaxone.

Thank you again ladies for your interest.  I will try to be of help on this issue and others as well.  God bless you.  Amy
Helpful - 0
333021 tn?1207759633
Hi Amy

Thanks for the info. .  I'll put this in my organizer.  I started Copaxone two wks. ago and no problems .  Its good to know these things before hand.

I sure hope sx. resolves for you and you can get back on the Copaxone .

  Did you start to feel better on the C, or notice any changes ?   The literature says it will help with slowing the progress down , but my ms neuro said it will actually help in feeling better.  ??

Great to have you back !!   Stick around for awhile   :)

Hugs and prayers

Jo
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Avatar universal
hello, thanks for sharing the copaxone story.  funny thing is i just started posting on here last week and that was what i was complaing of, burning (acid) like feeling in the stomach, feeling sick almost everyday but i had diarrhea along with it. real bad in the am, not so bad during the day, but would come back at night a little bit.  this lasted about two too three weeks. this time around. this has been going on for a while now, comes and goes. i have been feeling better this week, although i still have a slight burning in my stomach that just does not go away. i seem to get full real fast, only able to eat a little at a time other wise i feel real sick.  i got some responses to my post and just chalked it up to the m.s.   i have been on copaxone for almost two years now.  does this sound like the kinda like what you were going through?  
Helpful - 0
Avatar universal
Hi Amy!

Long time no see....so to speak...

I'm sorry you're having some problems with the Copaxone and I hope it resolves itself quickly...

We sure do miss you around here!  :)

HUGS!
Tammy
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Avatar universal
Hi Momz

Thanks for the nice words.  Otherwise things are good; walking well, energy level is up, etc.  I am truly hopefull too that I can continue Copaxone.  

I will post when I find out if it is indeed the med.  I do read the board frequently and see that you are always such a great support to everyone.  Keep up the good work, and I hope you are feeling well friend.

Love to you,  Amy
Helpful - 0
220917 tn?1309784481
Hey, friend!! I sure recognize you!!  I've missed you!  It's great to see you here, sharing good information.

Wow, I'm sorry that you are having trouble.  I'm glad you went to see your doctor about it, and that he's taking care of you.  

It is wonderful that you are sharing this info for our Copaxone patients here so they know what to look for.

I wish you were feeling better, Amy.  How are things otherwise?  Smooth sailing, I hope!

Now that you've come back to us, I hope you'll stay a while.  Let us know what the verdict is once you discontinue your medication for a bit.  Hope you can go on taking it!

Feel better!

Zilla*
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