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Avatar universal

My mom has MS, treatment?

My mom was just diagnosed with MS and she is trying to pick a medication, and since her Dr is no help, i need advice. All we were told was copaxon was the best.... However, somewhere she said that she saw that copaxon can cause heart problems, is this true? I really would love some input on what medications are the best and offer less complications/side effects... This is so hard... Thanks
15 Responses
3204881 tn?1345499926
Hello and welcome to the communtiy.

I take Copaxone.... In all my reading about the drug I have not found anything about it causing heart problems. Maybe there is something that I am not seeing. The most common side effect of Copaxone is the injection site reaction.

I hope that this help you.

Best,

Tom
Avatar universal
Thank you very much..
Avatar universal
Each of the medications have their good points and bad points. I've only been Dx for 2 1/2 years, but I have been through most of the medications.

Copaxone is one of the older drugs and is generally considered the safest of them, but it is not the most effective of them. The common side effects of it are injection-site reactions (think HUGE mosquito bite) and sometimes it will cause permanent dimples around the injection site (I think it has something to do with it breaking down fatty tissue there). The other fairly common reaction is something that resembles a panic attack (some people say heart attack, but I think panic attack is a better fit for it). You get chest pains, short of breath, rapid pulse... But it's not dangerous - it lasts for about 15 minutes, then goes away on its own, not causing any damage. And it doesn't happen every time - pretty rarely, in fact. The major downer to Copaxone is that it's an every day shot.

Then there's the interferons (Avonex, Rebif, Betaseron). They are generally considered a bit more effective than Copaxone.  The major side effect to them is a flu-like reaction for 12-24 hours after the shot (Avonex is once a week, Rebif is 3x a week). I hated that reaction. Think of the worst flu you ever had and how bad your body ached during it and that is what this shot is like for some people. I did finally build up a bit of tollerence to it after 6 months and it wasn't quite as bad anymore. I had my doctor prescribe me Ambien so I could sleep through most of the pain (though my husband said I would still moan in my sleep). They have to monitor your liver enzymes while on these medications because some people have developed problems while on it. I had to be taken off Avonex (and all interferons) because my white blood cell count dropped too low, putting me at risk of infection.

Gilenya is the pill tht came out last year. It is pretty much on par with the interferons as far as effectiveness goes. It is still very new and the long-term side effects of it aren't known yet and a lot of doctors are hesitant to put their patients on it unless they aren't responding well to other medications. They make you do tests for skin cancer, macular edema, heart (EKG) before you are allowed to go in this drug because they think there MIGHT be a link between this drug and those problems so they want to make sure you're not already at risk for them. They also have had a few deaths in the clinical trial from viral infections while on A higher dose of Gilenya. The most common side effect is a lowered heart rate (they make you take your first dose in a doctor's office to monitor your heart), but it generally improves after 4 hours. I will note I was an exception to that - my heart rate kept going down for almost 12 hours (dropping from 75 to 45, and my blood pressure dropped from 90/60 to 60/40). Even after being on Gilenya for two months my heart rate only went back up to 55 and my blood pressure to 75/5, and I was tired constantly while on it. However,  from what I hear, I was the exception. I was pulled off of the medication after my doctor's office tested the T-cell levels of all of their patients on it, and ALL of us came back with T-cell counts below 200 (150-500 is normal, 200 is the level when a person with HIV is considered to have AIDS, below 20 is considered "critical" - my counts came back at 13, another patient's at 8). The doctors felt this left us at risk of infections and advised us to think about if we wanted to remain on the medication. I chose not too.

Then there is Tysabri. It's a once-a-month IV medication. It is generally not used unless a patient doesn't respond well to other treatments. It's major concern is that patients on it can develop a potentially-lethal brain virus called PML. It's not common, but does happen enough that they have to advise patients about it before they go on the medication and most doctors now will do a JC virus test (the JC virus is what causes PML and about 50% of the population have it sitting latent in their systems) before they put their patients on this medication. If you test positive for the virus, you are at a higher risk of developing PML. Some doctors will still have JC positive patients take Tysbari for up to two years, because PML had been shown to occur after the two-year mark.

And then there's the new pill, BG-12, which will hopefully be coming out the beginning of next year.

Long winded. Sorry. And yes, a lot of the side effects sounds... well, not pleasant. But remember tht not every person has every side effect. ;-) Some people swear by their Gilenya/Tysabri/Avonex/Copaxone, etc. you have to choose which one you (or your mom) are comfortable with and that best fits into your lifestyle. ;-)

Best wishes to your mom!
Avatar universal
Oops... A few corrections (typing on my iPhone is difficult for such long-winded posts!). Normal t-cell counts are 500-1500 (not 500-150) and my blood pressure finally went back up to 75/55 (not 75/5). ;-)
1760800 tn?1406753451
CanCanrun gave you a pretty good rundown on the various DMD's I would like to add my two cents into this.

I am on Avonex have been since February and while there is a possibility for flu like symptoms it varies person to person.  I titrated up to a full dose , quarter, half, three quarter then full.  The worst symptom I had was a headache.  The key is drinking plenty of fluids and pre-medicating.  Aleve the night before, morning of and night of.  Then I take acetminophen the morning after if there is a headache.  There are many here on various DMD's and hopefully you get more input.  I do know several of us on Avonex and we have had similar results as far as side affects.  

If I do not pre-medicate then the headache comes if I do -  I wake feeling fine.

Hope this helps!~
Tracy
572651 tn?1530999357
the answer about heart issues is there is sometimes - pretty rare - an immediate reaction to an injection that makes it feel like you are having a heart attack.  By the time you would call for help, the pain would be past.  It's reported to last at most 15 minutes.  If it happens it would be scarey, especially if you didn't know about this possibility.  This reaction is NOT a heart attack and does NOT cause any heart damage.  The recommended course is to call either Shared Solutions or your neurologist for advice if this happens.

good luck with this decision,
L
1896537 tn?1381900009
I think it all comes down to personal choice in the end (some people wouldn't want to inject daily) BUT I think Copaxone is the best choice for many because you don't have the worry of flu-like symptoms or potential liver damage. That said, I was only on it for less than a week and was taken off of it as it was causing a racing heart and night sweats etc and these weren't immediate post-injection reactions. This was a constant. I'm told it's really, really rare to get that type of reaction though so don't be put off! I'm hoping to be allowed to resume Copaxone once I've seen my neuro as I'm not suited to interferons. I hope your mum finds a dmd she's happy with. Keep us posted.
198419 tn?1360242356
Hi there,

Thank you so much for joining us. You ask what so many do - how do we choose a treatment? What is the "best?" What's the most effective? What are the side affects? The questions can go on and on.

One fact to consider that stands true in all of the choices (thank god we have more than a handful), is that what works for one individual, may not for another.

So, to add some clarity, it was mentioned that Copaxone was not as as effective. This is not necessarily true. Individual biomarkers play a major role in how one's body responds or "work" for us.  Think of it how some people have to switch blood pressure meds, or other medicine because one is not working as well as another. Also think of it how some people get side effects to one med, while others experience hardly not at all.

As in all medicine, it's a balancing act between benefits vs. risk.
i.e., one risk of not getting on a disease modifier is possible progression, and relapse.

I'm on one of the interferons, Rebif. There are 3 interferons; the other 2 are betaseron and avonex. Each have varying doses of interferon.  I am one who responds well to interferon. My side effects are minimal, and while I have chronic MS problems, I've not progressed.  You will find a variety of experiences here on the forum. Some have tried the interferons and had to switch. It's what I said initially about benefit and risk, but also biomarkers and if your body responds to that med.

SO, sorry to say so much, and I hope I've not confused you at all.

Things for your Mom to consider initially.......
Compliance to medicine (has a lot to do with lifestyle also)
Questions for Mom
-Will she stick to a once daily injection
-Will she stick to a once a week injection
-Will she stil to a 3 or 4xs a week injection

Other things to consider.
Has the doctor mentioned the oral? If not, there may be a reason for that.
What is her relapse history in the past year or so? Depending on the answer to that question, the doctor, based on his patient experiences, may be willing to choose the medicine for her. Some doctors like mine chose Rebif and I believe it was because it's a higher dose interferon, and he wanted to start me on that initially because early treatment is best where MS is concerned. All the studies show MSers respond well to disease modifying therapy in the early phases of the disease, while secondary and primary progressives respond least to those same medicines.

I can find a couple discussions for you to look through if you were interested in seeing the thought processes behind decision making by some of our members. We've talked about it on and off through the years and new members find it helpful.

Please ask any and all questions - it's what we do here :)
Thanks for joining us, and give you Mom a cyber hug from us. Hope we can help you wrap your head around this so you can help her :)

-Shell
Avatar universal
I'm concerned with the doctor who isn't any help.
Is she stuck with him or can she go somewhere else?
Avatar universal
I am going to find her a new one asap.. We have an appointment this morning with her regular Dr to discuss everything. The neuro basically came on and told her she had ms it was confirmed by the lumbar puncture, said there were four different types of ms, listed the possible five medications, and handed her a brochure for the pill one, and copaxone...that was it.  It kinda made me mad how he acted.... He didn't want to give me the time to answer any questions, and i had to actually ask him which kind of ms she has.  How can a dr come in and be so noncaring when telling someone they have such a horrid disease... It was horrible. Ad then to not give the time to answer questions, not acceptable.
Avatar universal
Thank yo everyone for your input  and help... We are just trying to wrap our head around all of this,,, my mom is pretty scared. Although she doesn't want the daily injections, i think side effect wise we will try them.... I am luckily an Medical assistant so i can give them to her so she doesn't have to stick herself. Hopefully her Regular Dr can shed some light for us too.. Im really glad i found this site with all of you.. Does anyone know where i can find support groups to take my mom to? I live in southern cali
Avatar universal
go to WWW.ms.org and check for local chapters near you,
they can sometimes guide you in right way

I'd find out what kind she has before making a medication decision.
seriously.
Avatar universal
At the end of the visit to neuro i asked and he looked at her history and said she has relaxed remitting ms
1337734 tn?1336234591
It really is helpful to be as informed as possible. It you log on into thr MS Sociey's website you can download a very Informative booklet called MS Disease Modifying Drugs. It is an overview on all the basic drugs being offered. At the top right of this forum is a box which says"search medhelp " you can fill in the name of any medication that you  are interested in and it will show you various posts from this forum which discuss what you posted. This will allow you to read people's personal experiences.

I hope this helps. I know how scary and difficult this desiring feels. We are all here to help you and your mom! :)

Deb

Avatar universal
Please read post LIME74. I'm new to all this and I posted my post to wrong group. It went under Gilenya. Then trying to copy it I reported it as duplicate. Oops! LOL as well as my oldest daughter laughing w/me. I hope.
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