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Help, I have a question about Copaxone

Hi you all it's Bob, Elizabeth's husband.

Elizabeth is having troubles with the Copaxone. Question anyone every have facial numbness, lip numbness and tongue burning. Also trouble swallowing?   Her personality has also changed and not for the better.  Other than that she hasn't had any other side effects. Well I take that back, she feels no pain at all on the left side but the right side it is like someone put acid in her. She has started feeling the opposite side. She put ice on here right hip and her left leg felt the cold not the hip at all.

I bet you all can guess it she is very depressed. She will still watch the grand babies, but won't do anything else. It seems the only thing that is keeping her going is seeing the kids face light up when they see her.

Thanks for letting me vent.
Hope to hear from some one soon
Bob

7 Responses
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198419 tn?1360242356
So, the tongue and swallowing resolved?  That is wonderful.  Be careful starting back up and pay attention to the time of day, just incase you had to bring her to the ER.  I wouldn't do the shot myself at night.

Tell her sorry about the numbness and that we're pulling for her - so very frustrating.  Will pray it resolves a bit. Unfortunately, believe it just comes w/the dx.  Remind her that though this symptom may be replaced with another, it can get better.  Doesn't mean it won't come back, but it can improve.

What may be contributing to her mood and frustration is that it feels like it's here for good.  In some cases it's true.  But, hanging on the hope that some issues back may help her cope with each thing as they arise.

Aaaaah, new windows that's nice.

Hugs to the both of you,
shell

Helpful - 0
Avatar universal
Sorry it took so long to get back.

Thanks for helping!!!!

I talked to the nurse at her dr. She is great. Elizabeth has an appointment next week. We were told to take her allergy meds everyday and start back with the Copaxone Wednesday. When Elizabeth  stopped the Copaxone she didn't have any problems except the facial numbness.

The facial numbness is still there and something new popped up. From the knee to her toes is numb only on the front part the back of her leg and the bottom of her feet are fine.

We think the mood change and depression is Elizabeth is just frustrated. Elizabeth has explained the mood as PMS on nitro.

thanks again for all your help.
I got Elizabeth a netbook so she can relax on the couch or bed while on line. Maybe this will help some.
Need to go I have to finish putting in the windows in our bedroom.

Bob & Elizabeth
Helpful - 0
198419 tn?1360242356
I hope you see this too Bob.  

She doesn't need to be backed up, but I'm BIGTIME seconding Doc Q.

This does sound like a reaction (except for the depression - separate issue).  

Please, Bob, stop the shots until you know more. Reactions can happen at anytime.  Reactions don't have to happen right away.  I had a bad one (not from Copax) 5 months into meds.

If the burning tongue and swallowing resolves, you'll have your culprit.

Jot down anything else she is on as well.  Any med can do this at ANYtime.  
-shell  
Helpful - 0
338416 tn?1420045702
It's possible that she's having a reaction to the Copaxone, but it sounds to me like a relapse.  Speaking for myself, I have a bell curve of symptoms - in the morning, almost none, and as the day goes on, it gets worse.  Then after 6:00 pm or so, things settle back down, and I start feeling better again.  
Helpful - 0
147426 tn?1317265632
I hope you see this and say hi to Elizabeth.  All of the needs to be reported to her neuro. I does sound like some sort of reaction to the Copaxone.  the personality change worries me.  Sounds like a deepening depression which has not been associated with the Copaxone.  Keep bugging the doc until you get a response.

Worried in Washingotn

Quix  
Helpful - 0
Avatar universal
We are not sure if it is the Copaxone. Elizabeth did talk to the nurse at Shared Solutions last Thursday they told her to call her dr. She did and was told to take Benedryl when she did her shot. She can't take Benedryl go figure she is allergic to something in the Benadryl She did take another allergy pill from when she had a reaction from another medication, She still had the problem after that. I have a call into the Dr. waiting for the return call.

It's hard to tell everything started a few hours after she took her first shot. Then after about 4-6 hours it would go away and then come back after she took the next shot. This has been going on since day one and its been a week.

Thanks LuLu
We have heard such great news about Copaxone and both of us were very excited.

I guess I better get off the internet. We live in the country where dial up is only available. Will let you all know how things are going.

Thanks again
Bob
Helpful - 0
572651 tn?1530999357
HI Bob,
I am so sorry that Elizabeth is having these problems.  

Are you sure that they are attributed to the copaxone? I have been on copax for 6+ months without much problems except for the local site sensitivity.  

What you are describing sounds more like a relapse than a reaction to the copaxone.  Does it only occur when she has just had the injection?  

What do the Shared Solutions nurses have to say?  They can be called night or day and I'm sure you have their number, but here it is again to save you from looking - 1-800- 887-8100.

Have you called the neuro about the depression? It could be a symptom of the disease and not just a by-product of the MS.  

Please continue to help Elizabeth and make those two calls.  Let us know how she's doing.

my best,
Lulu

PS I light up too when the granddaughters come over - they all are special to us grandma's,
Helpful - 0
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