Standing at the edge of a cliff

[daisy59]

If someone begins to take Copaxone for MS, is there a problem with stopping the medication if it is later learned this was an incorrect diagnosis?

[daisy59]

Hi Deb,  

I made a statement about the vitamin D issue that was confusing.  When Colin was 12 and overweight the pediatrician told us to stop giving him milk for the weight issue and just give diet soda.  I spoke with a dietician colleague (I am a clinical social worker) who told me not to do this so we just continued with the 1% milk.  I was glad that at least I had not deprived him of the vitamin D in is growth years or it might be worse than it is. I do still wonder about the aspartame in the diet soda though.  

Thanks so much for all of your encouragement.  We do have a significant number of family members with arthritis (including myself but only in the hands so far) and carpal tunnel also.  Our 30 year old daughter has some arthritic type problems in hands also but she found MSM to be very helpful and has no trouble and I have begun taking MSM and chondrotin myself.    Our 25 year old son has schizophrenia and frankly I have been researching connections with the MS and there are some in terms where one is born (the further north the higher incidence and also according to an Australian study more children born during the winter and spring months develop these disorders).  The hypothesis is this is related to a vitamin D deficiency in the mothers. This has been the focus of studies with rats - they eliminate vitamin D in mother's diets and the baby rats mimic symptoms seen in both disorders.  Our story corresponds with this.  We live in the Hudson Valley of NY state.  Chris was born in Feb and Colin was born in Jan.  Thanks again, I so appreciate all the wonderful responses.  

  

[cali1892]

This is a very good question that I have been wondering about as well.  With all of the drugs to treat ms, the abc's and the rest.  What if you don't have ms and are treated with them?  What happens?  
I don't doubt it, I just like to float on The Nile occasionally.  :l
I know this is a question for my neuro, and I will ask him next time I go, just wondering if anyone knows off hand?
Thanks.

[Deb61]

I have a 21 daughter, and I know I would have great difficulty if she were to be diagnosed with any chronic disease like MS.  To me, she's my baby.  She's just starting out her life for crying out loud!  I would probably do what you're doing, too, and get the second opinions, etc.  Talking with people on this forum is a really good.  You're more likely to get a better truer picture of the disease and information that is more accurate.  

I also have a family history with autoimmune diseases.  My sister has MS and on my mother's side, all the women have something (mostly arthritis).  

MS is very unpredictable and variable.  Just because your cousin died from the disease, doesn't mean that Colin will have an aggressive course.  My sister's MS started with a bang and hasn't let up since.  She hasn't been able to walk since the start of the disease (foot drop problem resulted in a horrible fall which caused serious injury, etc., etc.).  She will be retiring on disability at age 45.  For me, I thought my disease course was like this, too, but 9 months after I've started the Copaxone, I can walk without trouble and have improved greatly.  I don't see myself in a wheelchair for long term, ever.  

I'm perplexed about your pediatrician's recommendation.  I've never heard of cutting out milk to help with a vitamin D deficiency, and would have questions.  Being vitamin D deficient, you'd want more of the vitamin in your body, so milk (maybe at 2%) would help with that.  Caffeinated beverages would interfere with the absorbtion.  Cutting out these beverages would help with the getting all of the nutritional benefits of the milk.  I'm wondering about the logic of his recommendation.  I have heard that smoking may be bad for people with MS, so that's good he doesn't smoke.  

Typically, people don’t die from MS-- this is rare.  In fact only 25% of people with MS even end up in a wheelchair.  My sister must belong to the 25% of people living with MS.  I think I belong to the 75% group.  There’s evidence that beginning MS with sensory symptoms, like Colin had to begin with, may result in a more milder course (the 75% group)—we can only hope this is the case!  However, MS is so unpredictable that you just can never know, unfortunately.  You just have to take one day at a time, and have faith that God won’t give you more than you can handle.    

[daisy59]

Thanks so much for all the information and encouragement.  I had a cousin who died with MS at age 45 about 10 years ago.  He was also diagnosed at around age 20 so that has been my experience with the illness.  I also have a cousin who is living with lupus, which was diagnosed when she was in early 20's - I think she is close to 60 now.   We also are going the route of looking at nutritional supports, but would not do that in exclusion.  Ultimately Colin is 21 and will be making his own decisions.  Thank God he has decided not to smoke or drink because I understand they both are bad.  Also I am glad that we did not listen to his former pediatrician who told us to stop milk (for weight reasons) and only give him diet soda at age 12, he would have been even more vitamin D deficient.  Daisy

[Lulu54]

I should have also added that many well intentioned people will try to help you and Colin with advice, anecdotal cures, and other bits of wisdom.  Please check out the facts by asking us here or talking to the doctors... there is a lot out there that is not true, and can cost a lot in terms of health and money.  

People stop copaxone sometimes for many different reasons ---- lack of finances or prescription insurance to get the drug because it is expensive, intolerance of the drug (injection site reactions), switching to another DMD because the Copaxone isn't slowing the progression enough...

I had a mental block this summer and didn't take my copaxone three days in a row - I just forgot to do the injection. I didn't feel any different because of the skipped doses.

And there are some people who just tire of taking the shots and stop because they don't believe it is doing them any good.  

There are probably other examples, but this short list should be enough for you and your  colleague.

Lu

[Lulu54]

Daisy,
that is absolutely not true.  I understand caremark not being able to comment on this, because they don't want to be liable for giving medical advice.  And we aren't doctors here either, but I can absolutely without a doubt tell you that stopping copaxone is not a problem.

I'm sorry to hear that Colin has been dx'd with Ms and I understand your doubts.  The amazing thing about MS is it does disappear for unknown reasons and then reappear just when you think everything is fine.  

The whole point of taking copaxone or one of the interferon drugs is to slow down the relapse rate with ms and give us a fighting chance to keep the symptoms under control.  Unfortunately the DMD's (disease modifying drugs) do not *cure* MS... right now there is no cure for this disease.

And please, keep in mind that there are lots worse diseases out there than MS.  If this is what colin has, the odds are he will live a productive life with few complications from MS that can't be overcome.  I am in an exercise class right now with a man who has been dx'd with MS for 44 years, and just recently has been walking with a footed cane.  He is in his late 60's and does quite well.  He is a husband and dad and grandfather too!

I hope you and Colin will learn all you can about MS - the more you know the less there is to fear.  Knowledge is power.  We have great health pages herre (yellow icon, upper right side of this page) that are written in easy to understand language by the members of our community.  If you have the time, you will find them worth reading.

Please stay in touch and let us know how colin's journey progresses... and certainly let him know he is welcome here too!

my best,
Lulu

[daisy59]

Thanks for reponding.  My 21 year old son was just diagnosed however we are seeking at second opinion at Mt. Sinai in NY City.  Colin has MRI's of the brain, throacic spine and neck showing some lesions.  The neurologist said the spinal tap was not necessary.  The only symptom he has is numbness of the left arm and hand.  Initially he had numbness of the left leg and side as well but these are gone.  The neurologist prescribed copaxone and a colleague advised me not to have him start treatment until we were 100% certain of the dx as once the medication is started it cannot be stopped.  I tried to get information from the pharmacist for Caremark but they will not comment on this only to say to talk to the doctor.  

[Deb61]

First of all, welcome to the forum!  There's quite a few people who take Copaxone in the forum.  I've been on Copaxone since March 2008, and the medicine has helped to stop the attacks.  

There's no withdrawl symptoms or anything like that when stopping the medication once you've started it.  However, stopping all disease modifying drugs may set yourself up for attacks and decline in your health.  

Have you been recently diagnosed?  Are you thinking the diagnosis could be wrong?  

[Lulu54]

Hi Daisy,
Welcome !  What an interesting question....

first of all the answer is there is no harm in taking copaxone if you don't really have MS, other than than the discomfort from the shots and possibly the lasting dermatological pitting that some people get from their injection sites.

your question is interesting because it leads me to believe you don't think you really have MS..... if you feel like sharing more of your story, we are good listeners.

be well,
Lulu