Tag Archives: RRMS

Tecfidera Doubts, I don’t THINK SO!

ID-1005doubt

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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3 Comments

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

My dear friend has been diagnosed with MS…ALMOST!

MeandDawn

Dawn: Hi Estizer! I’ve been thinking a lot about you lately. I’ve had some mysterious health issues over the last few years and my neurologist called yesterday to say that my spinal tap MS panel was positive. This is very new & scary for me so very few people know. I just had to tell someone and I knew you were the right person to hear it. Thanks for listening! ~Dawn 5:15pm

Estizer: Dawn!! you’re absolutely right,I AM the right person!! All I can say right now is, relax! It’s a scary thought, but RELAX. We can meet whenever and wherever you want. It’s gonna be fine.

 3:17pm-Dawn: The doctors still aren’t positive what I have! I had white matter changes on my (great video here) Brain MRI, a spinal tap that was positive for inflammation in the ms panel, but then I just got a normal result on a Cervical Spine MRI. This is so frustrating! I just want a diagnosis so I can move forward with whatever I have.

5:31pm Estizer: I know THAT feeling! What does “changes in the white matter” mean? Did you have lesions or not? mri-multiple-sclerosis-lesionsDid they show you? What have your MS symptoms been Dawn? This is probably the LEAST important question because there could be a million and one symptoms, and they ALL mimic some other illness as well. Have you had more than one weird episode? My leg originally acted crazy, but then it stopped. The NEXT year, it came back in both legs. Hence, the TWO separate weird things.

5:43pm Dawn: My Brain MRI was odd. Fluffy white patches that even baffled my neurologist. Not your typical lesion appearance I guess. Then he ordered the (great video here) Spinal Tap. My symptoms are odd too. It started with an episode of brain fog, fatigue, & low-grade temps 3 1/2 years ago. The afternoon fatigue & fevers have NOT gone away. A year & a half ago I started with a roaring sound in one ear and that’s what led to the Brain MRI since my ears turned out normal. In addition to this I have mild tingling in my legs & hands and definite muscle weakness in my hands.

5:48pm Estizer: I remember this test where I had to watch this TV screen that had black and white checks on it, while I had these “probes” on my head. Not at all painful. Did you do that one? That one for me was one of the tests that also indicated MS.Was your most recent MRI, a year and a half ago?

5:56pm Dawn:I am scheduled to take that visual test next week. Its called a Visual Evoked Response. My Brain MRI was in November. The Cervical Spine MRI just 2 days ago. I spent most of those years going to my family doctor who had no idea what was wrong with me. She sent me to an infectious disease doctor and urologist (because of frequent bladder infections). She also treated me with several different kinds of nose spray & antihistamines for my ear problems. I finally said enough with her and sent myself to an ENT. I can thank him for figuring out that my problem is neurological. Needless to say, I will need to find a new family doctor eventually. Did you ever have a Spinal tap?

6:03pm Estizer: HAHAHA, on the family Doc, and yes, on the Spinal Tap. It was one of my confirming tests. Too many white blood cells if I remember correctly. Sign of inflammation. I went thru a couple of unaware Docs too. When I was diagnosed though, happy to say, they had JUST recognized that MRI’s were a powerful indicator, or it would have taken much longer to catch. Be patient Dawn(yeah right!).

6:20pm Estizer: When they finally diagnosed me; I was relieved to KNOW as well. Big for me…it definitely was NOT a brain tumor, and it was NOT cancer. Those were my biggest fears. I guess I figured, as long as they came back with something that wasn’t terminal…I would be fine. Oh yeah, or make me lose my baby. I was pregnant with Lil. E. When they said MS, my two questions where; will it harm my baby and is it genetic? Will I give it to her? I liked the answers.

7:01pm Dawn:Thanks again for chatting! So many questions, like…Is it possible to have a normal spinal MRI and still have ms?

7:50pm Estizer: Gee Dawn, I’ve never had a Spinal MRI, just brain: / Sorry, I was away from the computer cause I took an emergency nap(LOL), MS fatigue.

8:09pm Dawn: I LOVE emergency naps! :)) Thank goodness they love me at work & give me time off when possible. I also have nice hours (7:30-3:30) which is when I’m at my peak performance. Working full-time is kicking my butt!

11:26pm Estizer: Yeah Dawn, but I miss working SOOO much. I miss the energy that I got from my kids but, MOST I miss the money; especially lately. I often think…I had to come out of the classroom TEN years ago. I won’t contribute to my household for what, FORTY YEARS? With all of the new medicines now, I’m beginning to wonder, how can I use some of them to make some changes? Seeing my “new” neurologist on Monday. Meanwhile, I suggest you do less at home. Teach the boys to cook. Make it fun. Tell them that they get one day each, per week. They need to decide the menu and put the stuff they’ll need on the grocery list. They can cook WHATEVER they want, as long as it’s healthy…whatever you think that means. 

9:18am Estizer: Hey!! How’d Sherry’s senior portraits come out??

6:24pm Dawn: I do love my job so I will hang onto it as long as I can. But I am in bed by 8:00 just about every night since I give ALL of my energy to my job. Sherry’s senior portraits were pretty nice. Not nearly as nice as what you got of her at Lock Ridge but a nice shot of her in each of her sports uniforms. I bought a collage so it’s a nice memento. Michael will be next. He graduates next year already!

8:51pm Estizer: Dawn, if this type is RRMS…it can be managed, and you will feel better. Hang in there and be patient with yourself.

Comments: What was your initial experience?

Are you in the process of being diagnosed now?

Have any new test been used?

 

4 Comments

Filed under Diagnosing MS