Category Archives: MS Drugs

MS: Motivation from Montel Williams

I have found several interviews in the last few days with Montel Williams, talk-show host, who also has MS.

Montel Williams interview about MS

Montel Williams interview about MS

I found them very motivational and wanted to share this on with you today.  https://www.youtube.com/watch?v=VpmKTMObICE&feature=youtu.be

Can you relate to Montel’s experience with MS?

COMMENTS:

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Filed under MS and Depression, MS and Exercise, MS Drugs, Uncategorized

MS: You make me wanna “Sweat Like A Girl”!

A few weeks ago, I went to a very nice dinner hosted by Gilenya at “The Marble Head Chowder House”. A Neurologist and MS Specialist spoke for a short time about MS and then for an even shorter time about one of the new disease modifying therapies, Gilenya. It’s a pill that has pretty much the same efficacy as all the others pills, however it’s one pill a day, not two.

For half of a second my interest was peaked, and then they mentioned its heart concerns and the special care that must be given when first taking the drug.

Hmmmm, maybe not :/

If it ain’t broke, don’t fix it. Sure my Tecfidera is twice a day but I’ve had zero side effects and if I did, heart health would not be one of them.

I did however, meet some really nice people. There were sisters who both have MS; talk about partners in crime. Another woman who brought her 2 siblings so that they could have a better understanding of the disease; I can’t take ALL of my siblings anywhere all at once, it’s too embarrassing. There was one other woman who like me, brought her husband. That couple talked a lot about Hippotherapy which I found fascinating. They convinced me that it was beneficial! I wish I could convince my Insurance Carrier of that.

All in all we had a great night! I think we should get together again and have a mini support group. Next time we should meet somewhere more exciting…I dont know, maybe for a class at “Sweat Like A Girl”. It looks like fun. I’ll let you know how it turns out.

We_Can_Do_It!Comments:

 

4 Comments

Filed under Mind-Body Connection, MS and Exercise, MS and Oral Medication, MS Drugs, Uncategorized

MS : Re-entering the Atmosphere!

Re-entering the work-force is like re-entering the atmosphere, and I’m going in like Sandra Bullock in the movie “Gravity”

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“Gravity” Movie Trailer

It’s violent and unstable; her shuttle burns up and falls apart all around her. She’s not sure if she’s gonna make it, but, her only choice is… Well, it IS a movie, but that pretty much sums it up.

Back in my real world, I’ve got a JOB! I haven’t been this excited about having a job since I was sixteen and one day. That’s when I began stalking the manager of our local grocery store, “Big Bear”. He made the mistake of telling me that I’d have to be 16, and I WAS.

I can’t finish this post now, or do anything else because, I have a job:) That means its 5 minutes til 8 and I have to go to bed at 8. Why, because I need to be up at 4 to practice mindfulness meditation for 30 minutes, stretch (with a teeny bit of yoga) , dress, have a muffin with tea, take my Tecfidera and Ampyra, leave the house at 6. Work til 9, am home by 9:30, big breakfast at 10 and sleep at 11. Wake at 12,  groggy til 1, leave for work again at 1:30. Work til 4, gym by 4:30, exercise bike for 30 minutes, leave by 5:30, home by 6, dinner at 7, take Tecfidera and Ampyra, shower and bed by 8.

BOY, I want to finish this, but I can’t. I’ve got SO much more to tell you :)Like: Why now? What have my doctors said? How much have I revealed about my MS?

Please come back soon:)

COMMENTS: What do you think my job is?

Hints: Must leave the house and be physical (no stay at home-computer work), must engage people, love kids, must require few hours(part-time), relatively low stress.

2 Comments

Filed under MS Drugs, Riding Out a Relapse, Stress Management

Tecfidera Doubts, I don’t THINK SO!

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Tecfidera has only been approved for about month. I started taking it 5 days ago, and, wouldn’t you know, eyebrows are already raised. There have been some reports floating around about a possible connection between Tecfidera and the development of progressive multifocal leukoencephalopathy (PML), a viral infection of the brain that usually leads to death or severe disability.

This is what I have found so far, only 4 psoriasis patients in Europe who have been treated with drugs that contain Fumaderm over the last 19 years have developed PML. 347 MS patients using the drug Tysabri, which also contains Fumaderm, have developed PML. That’s since Tysabri was approved in 2007, only 6 years ago to treat Relapsing Remitting MS (RRMS). So, it seems to me that PML does not become a threat to my health unless it is used in Tysabri, to treat my MS.

My reality is:

I’ve had RRMS for almost 20 years.

I began taking other disease modifying drugs (DMD) about 17 years ago.

Until now, I’ve not been overly concerned with progressing to Secondary Progressive MS (SPMS). What makes now different? I stopped all DMD roughly 2 years ago. A little more than 1 year ago, I entered the most severe relapse that I’ve had to date, and it has lasted more than a year. Could it be that the DMD’s had delayed my progression to SPMS. By stopping all DMD drugs, could I have allowed SPMS an opportunity to take hold?

I did not take the earliest approved oral DMD because my Neurologist encouraged me to be patient and wait for Tecfidera, based on the limited information there was about ALL of these drugs. He deemed Tecfidera to be the best for me. He also wanted me to continue the DMD that I was using, until Tecfidera was approved.  I did not.

So here I am, 5 days into Tecfidera, with this new information. I am not the least bit deterred.  In a perfect world I would give any new medicine more time on the market before I used it, but my world is not perfect. I am now 50 years old and at a crossroad. If I were to wait 10 years before going back on a DMD (so the drug could be on the market longer), I would be that much closer to SPMS. I’m not willing to wait any longer. All of the data indicates that taking Tecfidera is not a life threatening-risk.

As MSers, these are the most difficult decisions to make.  No one should be judged for the choice they make, unless you are willing to take the disease, life WITH IT, and all of the uncertainty of its future.

I wish us all well,

Estizer

 

 

 

 

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Filed under MS and Disease Modifying Drugs, MS and Oral Medication, MS Drugs

Tecfi-WHAT? Candy for my brain!

Tecfi- WHAT??

brain.candyCandy for my BRAIN! My new MS disease modifying drug (DMD)

Yeah, that’s right …I’m on a new MS disease modifying drug that I’ve never heard of, and it was only approved by the FDA last month! I’m the one who wants everybody else to take these drugs for a few years first, so that I can see what happens. Well, guess what? I don’t have a few years to wait.

Reality check: This disease existed a bazillion years with no help in site, so, it’s time to take action; well, more action. The very first drug was approved just as I was diagnosed. I started taking it a couple of years later; I was scared because it was so new. Now, they’re coming out so fast, I can barely keep up. Years ago, when my doc felt like I had reached the “glass ceiling” of Avonex (injected once a week), I switched to REBIF (injected three times a week). REBIF worked well enough, until I couldn’t tolerate it any longer. It, or ANY of the injectable medicines. After being on those for so long, the side-effects just wore me down. How lucky am I for this “burn-out” to occur, just when so many other drugs are being approved. Gilenya, Aubagio, Tysabri, and now…TECFIDERA!

I take a Tecfidera capsule twice a day and that’s IT; no more SHOTS! It’s the new “candy” for my brain.  I do look at it that way, when I think about the difference it will make on my future. It has also been known formerly as, BG-12, which is a super big plus to me. Back in July 2012, when I saw my favorite Neurologist, he promised me that “very soon” there would be two new drugs approved that he would agree to me taking. We have a great understanding; he knows what’s important to me and I know those same things are important to him, so I trust him. I call him “OZ, The Great and Powerful”. BG-12 was one of those drugs.

In clinical trials, it rivals the other disease modifying drugs in, relapse and reduction of disease activity shown on an MRI. Another super plus on my list – it has been used in Germany for decades, at much higher dosages, to treat Psoriasis.  There is still that little question I have about the blood brain barrier, and how THAT’S affected by this drug in the MS brain. If anyone knows, please tell me. Otherwise, we’ll find out in due time. What we DO know now, from its use in Germany, is that it does not cause death (that’s kinda important).

The lack of side effects pretty much sealed the deal for me. The most common one is, “flushing”. This lessens and usually goes away within the first month. It’s a sensation of heat, or itching, and a red blush in the skin. HA! That’s MENOPAUSE for a month; you don’t scare me! Bring it on!

Candy for my brain:)

Did I mention that this candy costs $8,900.00 for a one month supply? Have no fear…co-pay assistance is here! I pay $10.00 a month, and so can you. The drug company has a $10.00 co-pay assistance program. There are no income requirements.  You can enroll every year, as long as you take Tecfidera. People covered by Medicare, Medicaid, the Va/DoD, or any other federal program can get help from MS Active Source with the cost.

THIS IS NOT A COMMERCIAL! I do not work for the drug company. I am just starting a new medicine that I’m excited about. I want to share:)

COMMENTS and THOUGHTS: What have your experiences been with Tecfidera?

10 Comments

Filed under MS and Oral Medication, MS Drugs

So…I’m positive.

Doc: It came back positive.

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Me: silence, then soft…”Damn, I guess I’ll go to plan B.”

Doc: “Now this doesn’t mean…“ I cut him off

Me: “This is actually good. Just yesterday I wanted to go with Tysabri, but, that brain infection thing was starting to give me cold feet. I’m not so sure I was comfortable with the risk.”

Tysabri alone is not the problem. If you test positive for the JC Virus, along WITH treatment with Tysabri, that’s a problem, or it can be. Patients who test positive with the JC Virus are more susceptible to PML; Progressive Multifocal Leukoencephalopathy,  a viral infection of the brain that usually leads to death or severe disability.

Doc: “You can still take Tysabri if you want. These are the 3 things to consider that would work against you: 1) If you’re already on lots of other medicines because you’re dealing with multiple health issues 2) You’re positive for the JC Virus, and 3) You’ve been on Tysabri for more than 2 years. Since you have only one of the three, the JC Virus, you could still take it.”

Me: “I‘ve already decided that Aubagio would be it, if I couldn’t take Tysabri? Are there any problems with it?”

Doc: “Well, it could compromise your immune system. It’s actually a “baby chemo” drug. It attacks rapidly dividing cells, like cancer cells; it is thought to slow the progression of MS by attacking in the same way, the rapidly dividing immune cells, which attack your myelin. Here in lies the term, “baby chemo” drug. Attacking these cells is good because it is thought to slow down damage to the myelin sheath, but, it also reduces the number of important immune cells.”

Me: “Well Tysabri is out for me, and you say Aubagio is a baby chemo drug. What if I get breast cancer in, say 2 years, and I’ve taken Aubagio? Will I then, not be able to receive the chemo that I’ll need because my immune system has been compromised? Or, might it be less effective?”

I could hear him thinking, O.M.G! W.T.H! Where did this lady come from?!

Doc: after a short pause, “No, not really. There is another drug I want you to consider. It’s only been approved by the FDA for a few weeks. I want you to goggle it and tell me what you think on Monday. We’ll make an appointment then for you to come in and sign the paperwork.”

Me: thinking, it’s only been approved a few WEEKS! Are you crazy?

Doc: “I don’t usually jump in like this, but, I’m sure this is the best drug for you. I’ve gotten to know you, and if we wait for you to decide, it could take MONTHS. You prefer more holistic approaches, and you’re asking me questions about cancer! This is the least potent of the three. The results from the test studies are good. It’s also has an excellent safety record. Things would have been different if you had come to me at the age of 22, with LOTS of active lesions, and symptomatic. You would have been a good candidate for Tysabri, our even Aubagio. We’ve talked about this at length; with 20 years in, there’s very little that a stronger drug will do for you. It’s more sensible to go with the lesser of the three, while continuing to protect your nervous system.”

Me: pause, “Okay Doc, how bout I research it, come in on Monday, and then I’ll let you know which one I’ve decided on.”

Doc: “No. This is the best one for you. You do the research and then come in and sign the paperwork so we can get it started.”

Plan B: I start the new medicine, tomorrow.

COMMENTS: Are you on any of the “new” disease modifying drugs? Have you tried more than 1 DMD? Why did you switch?

7 Comments

Filed under MS Drugs

Monsters, INC.

There are monsters in my closet, waiting to emerge.

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“You’ve got active lesions in your brain”. That’s what my neurologist said to me as we looked at my brain MRI. My response: “So what…that means nothing, you’ve probably got’em in your brain too. Have you ever looked?”

I learned a long time ago that MS symptoms and lesions didn’t necessarily go hand in hand. You could have symptoms with no lesions, or lesions with no symptoms. You could have many lesions with very mild symptoms, or a few lesions with lots of symptoms.  So…I think the “monster in my closet” approach is one way that doctors try to scare new patients into taking these disease modifying drugs(DMD).

Don’t get me wrong; I love the drugs! I’ve been on them since they were first approved by the FDA. I believe they are ONE of the reasons that in the twenty years that I’ve had RRMS, I have not progressed to SPMS. Statistically 50% of all patients 10 years into the disease, do progress from RRMS to SPMS. I wonder if that statistic was calculated before the development of the first disease modifying drug in 1994. If so, I would expect that statistic to be even better for patients diagnosed after 1994 who have had the benefit of these drugs.

The good news is active lesions along with symptoms, means that I’ve NOT progressed into SPMS. If I were symptomatic, with NO active lesions this far into the disease, that would be indication that I had moved from RRMS into SPMS. So, YAY for my active lesions! This also says to me, this relapse will end (remit).

The moral of this story is…make no decision out of fear. I will choose a new DMD very soon; not because there are monsters in my closet waiting to emerge, but, because I believe these drugs have had a positive effect on the course of my disease.

IT’S NOTHING PERSONAL; IT’S JUST THEIR JOB.

Thoughts and Comments:

Have you decided to use any of the DMD’s?

If so,do you feel that they have helped at all?

ps. I’d love for you to join me on Facebook: https://www.facebook.com/pages/MS-Open-Mic/579107032117769?fref=ts

and Twitter: https://twitter.com/EstizerSmith

10 Comments

Filed under MS Drugs, Neurology

I’m a Neurologists Nightmare!

For 10 years now, I’ve seen two Neurologists; one in the mid-west, one on the east coast. The Neurologists near me just don’t know as much about MS. Here’s the problem: both of my current Neurologists are at major teaching hospitals, and both are heads of Neurology at those hospitals. I am nowhere near a teaching hospital where I live now. This takes me from the expertise of an “Academic MS Specialist” who see’s thousands of MS patients; to a “Non-Academic MS Specialist” who see’s only hundred’s. Which one would you rather have?

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I want my Neurologist to respect everything that I bring to the table. Be able and willing to explain everything so that I understand it, and then…back the hell up! Give me the time and space to do my own research, considering my options.

Maybe I’m a bit of a nightmare, but I’ve got a GREAT personality!

On my first visit to see my “new” Neurologist, I thought he was nice enough, friendly even; that’s a plus. Middle aged, and, this means I could have him for years. The down side of having Academic Specialist is that they are usually on the downside of their career. My mid-west Neurologist has been practicing medicine for 50 years! About half way through our interview, I mean… conversation; when things were going well, I ask the new guy, “Are you married, do you have children? How many? Do you live in the area?”

Hold on Buddy, keep your pants on! My husband’s in the room! I explained quickly that I’m not being fresh. I want to know these things because I need to know if you’re vested in this hospital, this area, and this life before I commit to you. I’ve been with one Neurologist for 10 years and the other for 15. THEY are not going anywhere; are you? His answers to all of my questions were satisfactory and now it gets sexy. They all want to get you naked as soon as they can. That’s our brain of course, so I agreed to the obligatory MRI.  I probably should have been more coy; you know, played hard to get. The problem is, when you’ve been doing this as long as I have, you lose all inhibition.

I listened to his “elevator spiel” on all the new medicines, and even said I would take one. I was looking at the floor, shaking my head NO, while my mouth was saying, “Yes”. He looked at my husband and said, “She’s a real handful…huh?” WHAT! Because I’m not jumping into bed with you? The medicine I had agreed to take was Ampyra; the walking pill. Ampyra is the only medication to date indicated as a treatment to improve walking in patients with MS. It arrived and sat on the kitchen counter for weeks. Like sex…he still had to wait until I was ready.  I was scheduled to see him in three months with a report. To my surprise, he called beforehand. He wanted to talk about my MRI, and how the new medicine was going. “Um…it’s not”, I say.

What I needed, I had gotten. A little space, and time to consider my options. A phone call and a little more coaxing at this point were perfect. It was like getting a box of chocolates! My other Neurologist never gave me chocolates.

After waiting a couple more weeks, I gave in and took the pill.

I can be a nightmare; but I’ve got a great personality!

Your Thoughts:

Have you ever felt like you knew more than your Neurologist?

Have you had a Neurologist tell you something about MS that you simply KNOW to not be true?

4 Comments

Filed under MS and Oral Medication, MS Drugs, Neurology

“WAIT!! Can I talk?”…my MRI

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I’m on the table, all strapped down and the conversation goes:

Nurse: “What kind of music would you like to listen to?”

Me:“None, I’m okay.”

As they begin to roll me in I say

Me: “WAIT!! Can I talk while I’m in here?”

Nurse: “Whaaat?”

Me: “I have to rehearse my script!”

Nurse (puzzled): “Only if you’re talking to us, and that’s when we ask you something.” Walks away with a huff!

So FINE! I say my script to myself, but I’m sure when I got to the part where I, snap my head and put my hand on my hip…the MRI picture of my brain will be a liiiitle bit fuzzy :/

I’ve had so many MRI’s of my brain I just go to sleep, but not today! The play is in just 3 days.

Oh, the MRI? Not a big deal. I’ve seen a “new” neurologist, and of course he wants new pictures. I haven’t decided to give him the job yet. He’s still in the probationary stage, but he’s got potential. He’s pushing all new meds. THAT takes me some time to research and consider, so, he’ll just have to be patient. Right now…I’ve got a PLAY TO DO!!

CLICK HERE for the MUST SEE Video: Understanding your MRI

How many MRI’s have you had?

Were you diagnosed without an MRI?

COMMENTS:I’d love to know your thoughts.

2 Comments

Filed under Diagnosing MS, MS Drugs

We Could Have Had It All: Aubagio


After combing through Aubagio’s website I came away with nothing. I called Genzyme, the drug company that makes Aubagio, 3 TIMES. I got Tim on the “help” line. After listening to my questions about the blood brain barrier (BBB), and then the molecular size, in Daltons, of the particles that make up Aubagio,Tim on the help line couldn’t get enough HELP to help me!

I refused to give up. The best Tim could do was refer me over and over again back to my physician. THAT was where I had started! All I really needed was a Genzyme scientist or research specialist! Why didn’t they have somebody like THAT on call!?

My confusion: I have one world class Neurologist who is “for” Aubagio and one who is not. The one who is not only gave a vague uncertainty of the blood brain barrier as his reason why. Now the other neurologist is not returning my calls with a prescription for Aubagio or an explanation as to why he’s had a change of heart.
Then, the Wall Street Journal prints an article stating that doctors are suggesting patients not rush to the new medicine.
http://online.wsj.com/article/SB10001424127887324595904578123420502281086.html

So…I’m on my own with my magnifying glass and my medical journals! What I find is that Aubagio, like the other disease modifying drugs, reduces relapses and such, but I question whether or not it compromises the BBB, and if so, how it affects the MS brain, its many lesions and their various changing locations within the brain? The unanswered questions and lack of understanding has made me decide to continue my Rebif regiment. I’ll continue to inject until Aubagio has been on the market longer. How long? I don’t know.

blogAubagio

What treatments have you found to work best for you?
What alternative or holistic treatments would you suggest?

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Filed under MS and Oral Medication, MS Drugs, Neurology