Aa
Too scared to take drugs
Sorry I have not posted for a long time, my user name used to be just sherma, but i forgot my password as well so I had to start all over!!!
Well I started on the Copaxone back in July, it takes approx 4 months to really get into your system so I found out, and then suddenly wham I had a major side effect - flu like symtoms which is not supposed to happen with Copaxone. I went to see my neuro (in December) and told him about it and he just totally dismissed it - so back in September I stopped taking the drug (I now have a fridge full of the drug). The thing that really scared me was that normally with Copaxone any side effects happen in the first few mins of taking the drug, this side effect took it's effect after 2 hours - now that scared me, I could have been anywhere, driving out shopping, with my son - anything. Luckilly I was at home and was able to literally crawl up the stairs and into bed shivering and feeling like i had been run over by a bus. This lasted for approx 2 hours.
Where I live if you are dx with MS then all treatment is free, but I dare not tell my Neuro that I have stopped taking it, a friend of mine who lives just up the road stopped taking rebif because she had a major side effect and the Neuro said that next time she has a problem don't bother to contact him.
Another side effect I was having was anorexia. I just didn't want to eat - I suffer with pvc's all day and my weight loss started there that was back in Oct last year, so now I wear a size 2 clothes. Move over Victoria Beckham LOL. Do you think that MS could effect the heart in anyway, maybe a lesion or foci ????
No but seriously, I just don't know what to do. The neuro had no clue about the MS hug - he just laughed and said that he had never heard of it, he was online at that time so he googled it and found out about it - hmmmmm sometimes I think that we know more than they do. I have always refused treatment, when they put me on steroids for double vision I had a rebound, so now he want to give me more steroids after another scan just to make sure everything is ok and also blood work and urine test. The urine test is something that i am worried about, because I'm not sure if they can tell if Copaxone is in me or not.
If anyone can give me any help with this I would be so grateful,
Happy new year to you all, and I am now back with any info that I can give too, I was dx over 7 years now - so I guess I know a bit about living with MS LOL
Debs
Well I started on the Copaxone back in July, it takes approx 4 months to really get into your system so I found out, and then suddenly wham I had a major side effect - flu like symtoms which is not supposed to happen with Copaxone. I went to see my neuro (in December) and told him about it and he just totally dismissed it - so back in September I stopped taking the drug (I now have a fridge full of the drug). The thing that really scared me was that normally with Copaxone any side effects happen in the first few mins of taking the drug, this side effect took it's effect after 2 hours - now that scared me, I could have been anywhere, driving out shopping, with my son - anything. Luckilly I was at home and was able to literally crawl up the stairs and into bed shivering and feeling like i had been run over by a bus. This lasted for approx 2 hours.
Where I live if you are dx with MS then all treatment is free, but I dare not tell my Neuro that I have stopped taking it, a friend of mine who lives just up the road stopped taking rebif because she had a major side effect and the Neuro said that next time she has a problem don't bother to contact him.
Another side effect I was having was anorexia. I just didn't want to eat - I suffer with pvc's all day and my weight loss started there that was back in Oct last year, so now I wear a size 2 clothes. Move over Victoria Beckham LOL. Do you think that MS could effect the heart in anyway, maybe a lesion or foci ????
No but seriously, I just don't know what to do. The neuro had no clue about the MS hug - he just laughed and said that he had never heard of it, he was online at that time so he googled it and found out about it - hmmmmm sometimes I think that we know more than they do. I have always refused treatment, when they put me on steroids for double vision I had a rebound, so now he want to give me more steroids after another scan just to make sure everything is ok and also blood work and urine test. The urine test is something that i am worried about, because I'm not sure if they can tell if Copaxone is in me or not.
If anyone can give me any help with this I would be so grateful,
Happy new year to you all, and I am now back with any info that I can give too, I was dx over 7 years now - so I guess I know a bit about living with MS LOL
Debs
Well, I have several things to comment on, but I'm not sure they are going to fit in a coherent explanation of anything.
The first is that I am not at all sure that the "flu-like" thing you went through sounds like a drug reaction. To me, as a doctor, it sounds like a sudden bacteremia or transient viral episode. It is noraml for someone who has a sudden burst of symptoms to try to relate it to their last meal or medication, but that is not always true. It is also very unusual, I think, for Copaxone. It may well have been a fluke or a cooincidence.
I would talk about it to your doctor and, if he agrees, then go back on the Copaxone, but do it for a few days while someone is available to help, just in case it was a side effect. The symptoms you describe, while very frightening, are not consistent with a serious allergic reaction and would not likely threaten your life.
Now, about the urine test. When the doctors order steroids they typically are doing it for acute relapses. One of the major causes of a relapse is an infection and the most common infection is a urine infection. So the urine test is NOT at all to test for drugs, but to look for infection. They also usually do a Blood Count and a Chem panel. So, I would not worry about the urine test.
Okay - The steroids and the severe rebound symptoms. I jsut discussed this with my neurologist. In patients who "rebound" badly after the steroid infusions, the solution is to give them a slow oral tapering dose over 1 to 4 weeks. This avoids the rebound effect. We had to do the same with asthmatics who would get rebound wheezing if their steroid bursts were stopped suddenly. A tapering dose solves that problem.
I hope those things relieve your mind a bit.
The anorexia, though, is vary worrisome. Severe weight loss is extremely hard on the heart. I do not think that anorexia is often seen with MS, though all things are possible. This must be investigated thoroughly! The PVC's suggest a metabolic imbalance, such as in electrolytes, calcium, magnesium, especially potassium. You have got to see your physicians about this and soon. Again, I have no reason to believe this is a side effect of the Copaxone, but what ever is causing it must be found out and treated! I cannot emphasize this enough!
I understand your fear that all of this is related to the MS meds and I can't, for certain tell you, but it is important to try to sort it out, especially the severe weight loss. Do you share the same neuro that dismissed your friend when she stopped the Rebif? If so, do you have any alternatives?
But, start with your Primary Doctor and get him/her on your side with your worries. And with the investigation into your anorexia and weight loss. Promise us you will start to get some of these things answered. And ask your neuro about doing the oral tapering dose after the infusions to avoid the rebound.
I hope this helps some. Quix
The first is that I am not at all sure that the "flu-like" thing you went through sounds like a drug reaction. To me, as a doctor, it sounds like a sudden bacteremia or transient viral episode. It is noraml for someone who has a sudden burst of symptoms to try to relate it to their last meal or medication, but that is not always true. It is also very unusual, I think, for Copaxone. It may well have been a fluke or a cooincidence.
I would talk about it to your doctor and, if he agrees, then go back on the Copaxone, but do it for a few days while someone is available to help, just in case it was a side effect. The symptoms you describe, while very frightening, are not consistent with a serious allergic reaction and would not likely threaten your life.
Now, about the urine test. When the doctors order steroids they typically are doing it for acute relapses. One of the major causes of a relapse is an infection and the most common infection is a urine infection. So the urine test is NOT at all to test for drugs, but to look for infection. They also usually do a Blood Count and a Chem panel. So, I would not worry about the urine test.
Okay - The steroids and the severe rebound symptoms. I jsut discussed this with my neurologist. In patients who "rebound" badly after the steroid infusions, the solution is to give them a slow oral tapering dose over 1 to 4 weeks. This avoids the rebound effect. We had to do the same with asthmatics who would get rebound wheezing if their steroid bursts were stopped suddenly. A tapering dose solves that problem.
I hope those things relieve your mind a bit.
The anorexia, though, is vary worrisome. Severe weight loss is extremely hard on the heart. I do not think that anorexia is often seen with MS, though all things are possible. This must be investigated thoroughly! The PVC's suggest a metabolic imbalance, such as in electrolytes, calcium, magnesium, especially potassium. You have got to see your physicians about this and soon. Again, I have no reason to believe this is a side effect of the Copaxone, but what ever is causing it must be found out and treated! I cannot emphasize this enough!
I understand your fear that all of this is related to the MS meds and I can't, for certain tell you, but it is important to try to sort it out, especially the severe weight loss. Do you share the same neuro that dismissed your friend when she stopped the Rebif? If so, do you have any alternatives?
But, start with your Primary Doctor and get him/her on your side with your worries. And with the investigation into your anorexia and weight loss. Promise us you will start to get some of these things answered. And ask your neuro about doing the oral tapering dose after the infusions to avoid the rebound.
I hope this helps some. Quix
Yes, I've read that too and it is somewhat disturbing. But it also says that if you get anxiety (not saying everyone does), it is likely to pass within 15 minutes. Personally I wouldn't find that bad, if I knew both what was causing it and that it would pass soon. Now panic attacks might be something else. Do you have these as well. Do you have an anxiety diagnosis?
ess
ess
I am just diagnosed and researching meds. My doc's favorite is Copaxone, so this worries me! I read in the Copaxone info that an immediate side effect can be anxiety, and I have anxiety issues, so that also worries me.
pins
pins
I remember you well and was always sorry when you left the forum. I'll be back later to talk. Quix
MY NAME IS KITT,
I WAS DX IN MAY OF LAST YR, I STARTED COPAXONE,
IN JULY, I TOOK IT FOR 3 MONTH,AND THEN BANG ,
I HAD A VERY BAD SIDE EFFECT, MY LUNGS CLOSED
UP THE COMPANY WAS VERY HOSTILE TOWARDS
ME AND MY BOYFRIEND WHEN WE CALL. I REFUSE NOW ANY SHOTS, MY DOCTOR WAS ALSO MAD. I THINK THE DOCTORS GET A PIECE OF THE ACTION WHEN THEY PRESCIP. THESE MEDS TO US. MY MD SAID I HAVE A MINC OF A HEART ATTACK.
I AM DOING GOOD, I HAVE HAD NOT MAJOR ATTACKS,
JUST PAIN WITH MY EYE. IT IS YOUR DISTION, WEATHER OR NOT YOU WANT TO TAKE DRUGS. GOOD LUCK
KITT
I WAS DX IN MAY OF LAST YR, I STARTED COPAXONE,
IN JULY, I TOOK IT FOR 3 MONTH,AND THEN BANG ,
I HAD A VERY BAD SIDE EFFECT, MY LUNGS CLOSED
UP THE COMPANY WAS VERY HOSTILE TOWARDS
ME AND MY BOYFRIEND WHEN WE CALL. I REFUSE NOW ANY SHOTS, MY DOCTOR WAS ALSO MAD. I THINK THE DOCTORS GET A PIECE OF THE ACTION WHEN THEY PRESCIP. THESE MEDS TO US. MY MD SAID I HAVE A MINC OF A HEART ATTACK.
I AM DOING GOOD, I HAVE HAD NOT MAJOR ATTACKS,
JUST PAIN WITH MY EYE. IT IS YOUR DISTION, WEATHER OR NOT YOU WANT TO TAKE DRUGS. GOOD LUCK
KITT
Welcome back. We are glad that you are back.
I am going to be starting Copxone in about one week. I used to be on Avonex. You talk about flu-like side-effects...wow!
Anyway, do you think it's possible that you did not have a reaction to the Copaxone at all, but your symptoms were coming from another source? It's very possible you had a slight infection going on, which presented with symptoms of the flu.
Now as to your weight loss. This is something you need to discuss with your doctor. This may not be a symptom of the Copaxone at all. You may indeed have something different going on, which needs a doctors attention.
If you feel that the Copaxone is not for you, you may want to discuss this with your doctor also. I personally believe that they Copaxone is NOT responsible for the flu-like side effects or the weight loss. What I am at a loss about, is the side effect you talk about a couple hours after the injection. This is all the more reason to talk to your doctor right away.
The Copaxone along with all the MS disease modification drugs are to help slow the MS down. You are taking a risk with your course of MS, by not taking any of these medications. Listen to an old lady that has had MS for over 12 years now. You don't want trouble down the line. Brain atrophy is a real concern, as MS goes through the years. Once brain tissue is lost due to damage, it is gone forever. The drugs on the market for MS are to help stop this brain atrophy I speak of.
I am very concerned about you. Have you noticed that your weight loss and symptoms have disappeared since you stopped taking the Copaxone?
I hope that you re-post and again, welcome back. We've missed you.
Heather
I am going to be starting Copxone in about one week. I used to be on Avonex. You talk about flu-like side-effects...wow!
Anyway, do you think it's possible that you did not have a reaction to the Copaxone at all, but your symptoms were coming from another source? It's very possible you had a slight infection going on, which presented with symptoms of the flu.
Now as to your weight loss. This is something you need to discuss with your doctor. This may not be a symptom of the Copaxone at all. You may indeed have something different going on, which needs a doctors attention.
If you feel that the Copaxone is not for you, you may want to discuss this with your doctor also. I personally believe that they Copaxone is NOT responsible for the flu-like side effects or the weight loss. What I am at a loss about, is the side effect you talk about a couple hours after the injection. This is all the more reason to talk to your doctor right away.
The Copaxone along with all the MS disease modification drugs are to help slow the MS down. You are taking a risk with your course of MS, by not taking any of these medications. Listen to an old lady that has had MS for over 12 years now. You don't want trouble down the line. Brain atrophy is a real concern, as MS goes through the years. Once brain tissue is lost due to damage, it is gone forever. The drugs on the market for MS are to help stop this brain atrophy I speak of.
I am very concerned about you. Have you noticed that your weight loss and symptoms have disappeared since you stopped taking the Copaxone?
I hope that you re-post and again, welcome back. We've missed you.
Heather
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