advice about meds

I was diagnised in August with MS. I think it took me a good 2 months to get over the shock. Now I have to make a decision about meds. I would like to hear some advice and imput about the meds that are out there right now. I am a full time mom of 4. There ages run 7yrs - 5 mths. I'm so afraid this is going to effect my daily life. I need to be well and have engery. I don't have time to be sick!! Thank you!

[Lulu54]

Hi and welcome to the forum here.  Those are  some good thoughts to kick around.  First, let me assure you that this DX of MS, while it stinks, can often be managed and your best chances are with taking a DMD to manage the progression.

Each of the drugs works differently and I hope your neurologist gave you lots of information to take home and consider.  But as you said it can be overwhelming too.

The injectable drugs work well and have a proven track record, having been around the longest- there are the interferons (rebif, betaseron, extavia, avonex)  and then there is glaterimer acetate (copaxone). each has a differenjt mmeans of injection and side effects.  REcently the oral drugs Gilenya (fingolimod)  and Aubagio (teriflunomide) have been approved for the US market and they offer some advantes and also have side effects to consider.

The best we can tell you is educate yourself, then have this discussion again with us here and with your doctors.  Between our personal experiences and the neuro's education, we can help you decipher what will be the best fit  to try for your situation.

see you around,
Laura

[Mummy76]

Hi Mamaking.

I have 2 toddlers so I understand the need to have energy!

I take Copaxone.  I chose this as I was afraid an interferon may put me out of commission due to the possible flu like symptoms.  So far it's been okay with only minor problems.  

[kwarendorf]

Another possibility is Tysabri. It is generally the go to med if the meds Lulu mentioned aren't working, or as in my case, your MS has moved beyond the Relapsing/Remitting stage.

There are advantages to Tysabri. The most significant one for me is that it's a monthly infusion. I would much rather go to an infusion center once a month for an hour than have to inject myself every/every other day. There is also a much smaller side effect profile for Tysabri. I have no side effects at all.

Submitted FYI :-)

Kyle

[TLC_31]

Yes, the diagnosis of MS is scary, but by attacking the disease (often with disease-modifying drugs) many of us live well. More than eight years after my own diagnosis, I still never “look sick,” although of course there are often minor annoying symptoms. Your prognosis is helped by the plethora of information here and elsewhere and the multitude of treatments available, some of which wasn’t available when I was diagnosed, and most of which wasn’t around as recently as 20 years ago.

An outstanding summary of the disease-modifying drugs is at the link below, and of course there are many other pages on that site targeted at the newly diagnosed.

http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/treatments/index.aspx

Remember that there is rarely a free ride; every one of them has side effects of some type. Also remember the frustrating reality that in the short term you really can’t even tell if the drug is having any positive effect at all. Despite what Lulu54 wrote, “the injectable drugs work well,” in reality they don’t work for everybody, either because relapses continue or because side effects are unmanageable. You may start one and have to change a few months or a few years later. Do give any drug at least a few months’ chance.

I use Avonex and it works well for me; it and other interferons have flu-like side effects that can usually be mitigated. However, because they are usually more intense in the first few weeks or months of treatment, I suspect a mom of 4 would want to have extra helpers on hand for 24-48 hours after those first injections just in case. I also once used Gilenya for 19 days, and the side effects were intolerable for me (remember there is no free ride), and it’s not as time-tested, but many people do use it with good results.

Ask questions anytime!

[Mamaking4]

yes the diagnoses is very scary!! As of right now, I have no symptoms, so basically I'm just waiting for something to happen, which is stressing me out. Everyday I wake up scared that it's going to be the day I will have my first flare up. I'm scared of taking meds that will make me feel sick when I feel healthy now. I'm going to have to ask my doc about the Tysabri, that sounds something that I would be interested in. thank you all for your input!

[twopack]

Newly diagnosed is such a hard place to be!!  All of us remember that rug-pulled-out-from-under-our-feet feeling.  It’s not only uncomfortable.  It’s downright scary! Unfortunately, MS doesn’t confine itself to those who have time or energy to spare.  It will no doubt require you to make a lifestyle change or pace yourself more carefully at some point.  But it might also give you the opportunity to teach your children (by living example) how to live through challenges rather than be ruled by them.  And the good news is that MS is more life-changing than life-ending.

So on to the meds!
sslowe posted a comprehensive list of DMDs - those presently available and those coming soon to a neuro near you. Well, it's a link to the list to be exact. Here's a link to the link to the link. http://www.medhelp.org/posts/Multiple-Sclerosis/DMD-List---Most-comprehensive-in-one-spot/show/1789999

I use Copaxone and it works well enough that I never consider switching.  It is a daily injection but I’m done with it in less than a minute each dose.  I prefer that 30-60 minute
time commitment to an appointment scheduled every 28 days so I can battle traffic and weather and bad IV starts and then still have another hour to sit (in yet another medical office) waiting for a drug to finish dripping into my vein.

[twopack]

If you don’t mind a few questions….
If you haven’t had any symptoms, what prompted testing and/or a neurological consultation?  What is you MS diagnosis based on?  Finally, is there any doubt in your mind that the diagnosis is correct?  If so, do you plan to seek another opinion?

I’m not questioning your circumstance or wanting to put doubts in a mind that has none.  I’m mainly curious because so few people get the chance to start a DMD before symptoms appear.  It’s a great opportunity for you if you have a proactive neuro who is working to provide you with the best shot possible to maintain full function far into the future.

Welcome to the MS community at MedHelp.  It’s a good place to be even if it is a lousy thing that brings us together.  

[Mamaking4]

that is actually a great question!! I don't know if I'm in denial or just being smart about second guessing. It was last october I went for a run and my left hand went numb. I thought maybe it was a pinched nerve so I went to a chiro. I do have back issues from a car accident. After a month it didn't get better so he suggested I go to my Primary. He then sent me for a MRI of my C-spine. Meanwhile, I didn't know I was pregnant with my 4th child...oops!! The MRI came back with 2 lesions suggesting possible MS and to do a brain scan. My primary then sent me to a neuro. He asked a million questions and physical exam. He said he doesn't think I have MS due to not having no other symptoms and thought it was just an old injury that got inflamed, and to come back after I have my daughter to have the brain scan. Meanwhile, the whole pregnancy my hand was still numb. It was probably a week after I had my daughter the numbness was gone for good!! Turns out it was carpol tunnel due to my pregnancy. I then had my brain scan and there are some non responsive lesions. Now I'm freaking out!! I asked if there is a possibity that it could be anything else, and he said no. I live in Florida now, originally from Long Island. So of course I go home and googled "what causes brain/spine lesions" and Lyme disease comes up. I have been trying to get tested for months. Last week I finally went to a doc that does the testing. Hopefully I will find out in a week or so. I need to move on. If it comes back negative then I can move forward with the MS treatment.

[TLC_31]

Hmmm … I read that you were diagnosed in August, and I presume you gave birth to your youngest in June, and I thought how that made sense, MS symptoms often flare up in women after they give birth.

Now I see that your symptoms were worse during pregnancy, which is unusual, although those have been attributed to carpal tunnel now. I’m puzzled.

Not knowing about Lyme disease or other things, and not knowing more precisely what your MRI report said, I’m looking at your lack of symptoms and sort of thinking whatever you have, MS or otherwise, is rather benign. I hope that’s the news you get in a week!

[Mamaking4]

I know!! From the moment I had her I was waiting for something to happend. Also, from what the neuro said I have several "old" lesions. They were sort of grey color. She was not my first pregnancy either, so I shouldve showed some signs even before her. My head is definitly spinning, and of course Lyme is very difficult to diagnose also. I just  want this whole nightmare to end. The only symptom I do have that came out of the blue was anxiety attacks, which occured 1 year after my son. That is a symptom of Lyme.