Tag Archives: Tecfidera

The Awakening

A couple of days after my last post I found myself in the Emergency Room.

It was something I wasn’t expecting at all. Despite what I had written about a few days before, things had been relatively stable.

It was monday morning. I took 8 to school. I was in a good mood, a productive one. I took my iPad and phone up to my bed. I was sitting there making long needed appointments for the family. My cats were curled up near me. I was on hold with one doctor’s office. Suddenly something came over me. It was like a “whoosh” feeling that began from my head and went down to my toes. I couldn’t explain it then, I can’t explain it now.

As that happened I suddenly fell over to the left. My whole body just tilted over. The tremors began. I grabbed the side of the bed to keep myself steady. I was aware of what was going on, but I was terrified. My eyes wanted to close. I struggled to keep them open, and my head up. I was dizzy. Just trying to grab my phone to find someone, anyone, felt impossible. I cried. I tried calling my friend Jess. No answer. Then my mom. No answer. My husband. No answer. I managed to text my brother who would know where our mother was. Told him it was an emergency. He called me back. I explained what was happening. He told me she was out of town for a day. Something about Galena. Ok.

I told him I think it’s a seizure. Not sure. I’ve had this happen before the last couple of months. A couple of times. Not sure why or what they were.

Jess finds me first. She says she can be there in a half hour, she’s out. I call the doctor, talk to the nurse. She tells me she will not hang up until my friend gets there. We have a 30 minute conversation. In that time, I finally stop tremoring enough to lift my head. To walk downstairs. Husband calls and he immediately leaves work. Jess arrives.

The nurse told me to go to immediate care which I didn’t think twice about, but now disturbs me because with their limited ability to treat me whether it was a seizure or my MS, why would she not tell me to go to the ER? Because I went to the immediate care. They couldn’t do anything for me and within 45 minutes they sent me to the hospital. Where I spent the next five hours.

Tests. Tests after tests. The focus for some odd reason was on my chest. At one point the technician came to get me for a chest x-ray. Now here’s me, in a hospital bed, thinking either I had a seizure(as I had epilepsy as a child) or it was a rather odd & wicked MS exacerbation, and someone wants to take a picture of my chest? It made no sense. And as someone who has spent the majority of their whole life in and out of hospitals, I questioned it.

Later it turned out my blood tests showed mild clotting, which they then told me was also common in those of us with MS & other immune disorders. So then I spent nearly 2 hours taking in radioactive fumes via mouth to light up my lungs to check for a blood clot. Which was, surprise! Negative. I could have told them that and saved my insurance a lot of money.

I was discharged and told not to drive till I saw my neuro later that week. And when I saw her, she told me she didn’t think it was a seizure. Despite my mother sitting there saying that she dealt with my seizures for nearly 2 decades and my descriptions of what was happening was damn similar. The Neuro’s reasoning was that I wasn’t unconscious.

I have no words. So angry. I think I’ve read more about my type of seizures over the last 44 years(I developed them age 1, they slowed down by 20 with only two in my twenties that we know of) than she has. I recounted this whole visit to my father that day. And he said the same, ” you were NEVER unconscious during your seizures”. I knew this. They weren’t the typical. I lost faith in my Neuro that day.

We’re still not sure what’s going on. I’m noticing a pattern. I thought they were panic attacks. But I don’t think so anymore. It’s something else. The Neuro wants to think it’s a combination of MS and hormonal.

Whatever it is it threw a monkey wrench into my life this week making me feel as if I couldn’t even take care of my own family. My friends were amazing and I owe them everything. They took care of 8, picking her up and driving her everywhere when I was unable to drive. I don’t like asking anyone for anything so this was hard for me.

Next weekend I restart the Tecfidera. My mother told me after the Neuro’s appointment “You put everything off, to take care of everyone else. But now you’re seeing the end result. You’re actually getting sick. They need you here to take care of them, so it’s time. Take the meds, or you won’t be here for them “.

I’ve gone this long. Nearly 25 years with minimal medication. I’ve defeated so many odds according to the doctors over the years. But I’m no longer invincible, I’m not the superhero I thought I was.



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Time to Breathe

I realized I haven’t written anything in the last few weeks aside from that very personal story that took me years to come clean with.

This summer has been one full of surprises, resolutions, and heartbreak. It’s also been full of bugs. Well not the ones I usually write about.

The beginning of summer started off with me starting the Tecfidera. Then just as abruptly as starting it I ended up stopping it. It took me so long to agree to taking meds again that this abrupt discontinuation of it felt like once again I was failing. Or rather that I was giving up too soon. So many others I knew were continuing on, soldiering on despite the myriad of troubling side effects.
At times I questioned whether they were setting themselves up for serious fail, whether dealing with some of these side effects(especially the more intensive ones) was a smart thing to do. I can’t speak for them, I know some who have had to give it up, and others who keep plugging along. And I admire and love them all.

However I know how I react. Again, it’s that paradoxic reaction I spoke about before. I am hesitant to go back on the Tec. I have read a few accounts by more and more new patients who state that their doctors are starting them on much lower titration schedules then the one we were all initially given. I have to applaud these neurologists because I believe that thinking this through and changing the guidelines may help so many down the line.

I must mention, I will try it again. I just plan on starting again at the 120’s but for once a day and for SEVERAL months rather then for just a couple weeks.

Ok, MS meds aside.

Summer has been ok. Annoying mostly. We’ve had the kids birthdays. Of Course. C turned 16!! This kid has grown up so well. Unless you count the times he’s told me I suck & he’s moving in with his dad. Many of his issues he’s seemed to outgrow. There are times I look at him and wonder if the Aspergers symptoms are really there. While he has the social hesitancy with new people, I also know that when he went to the family camp with his dad in Pittsburgh he had a blast & made a lot of friends. So I don’t know what it is out here that holds him back.

Today we had registration for sophomore year. I watched him from a distance and realized he towers over so many of the other boys his age & younger. The school nurse, who I came to know well from school meetings, saw him today and exclaimed how good he looked, and how tall he’s become( 5’10-not from my side). The thing is, he really is a handsome kid, if only he realized that.

I have high hopes for this year. Next week we’re going to Target for him to apply for a job now that he’s 16. Plus he’s thrilled by the idea of making money to feed his video game habit. I just want him out in the world. He’s smart as hell & lately all teenager and nothing more. I admit I will miss him when he goes back to school.

E turned 7 and is more like 16 these days then 7. She definitely knows who she is and what she likes. Some days she rules the roost around here. Well, not really. I put my foot down when she’s getting out of hand but at the same time I want her to explore this confident side of her self. When it’s out of hand I let her know.

Otherwise this summer has been me just trying to get by. We went to Rye, NH for the yearly family vacation with J’s family. We always have this wonderful, food exhaustive, and booze soaked 9 days that takes my liver a week or so to recover from. It’s enjoyable and at times exhausting. Mainly because my kid & her cousins had zero concept of time and would wake all the adults up at crazy early times in the morning. Eventually I started locking our door when E left to find her cousins. Then I slept in until 10 if I had the chance. Because at home it sure as hell wasn’t going to happen.

Since home I’ve had spider infestations, reconnections with a sibling, and reconnections with friends I thought lost for good. It’s made me happy. Well, not the spider part. That wouldn’t make anyone happy. Unless you were a shut in.

I’m a very melancholy person. I appreciate everyone(almost everyone) who has ever come through my life in positive ways over the years. And lately there have been people I’ve felt the need to reconnect with and make amends to.

There were some I were close to that I don’t know why I lost touch with in the first place other then stupidity and being a kid. In the past year a couple of them have come trickling back into my life & it’s made me immensely happy.

I don’t say goodbye and forget about people for forever. I don’t know what that says about me. I just know everyone comes into your life for a reason, and some aren’t meant to be lost.

This coming school year, I plan on taking time to figure things out for me. I plan on working on the two novels I have going. Both are complex, and they took a backseat to the craziness of the last few months. My goal is to finish at least one of them in the next six months.

Music is once again at the forefront of my being. I let it lay dormant for so long. This obsession of mine. For so many years it defined me. It brought J & I together. And I let it dissipate. But not anymore. I’m trying to remember what songs & bands I loved and why. I was introduced to a band recently that rocked my world making me wonder why I didn’t know who they were before. Then I remembered my funk.

This year will be different. New connections. New starts. Positive thinking. And New Starts with old friends. And resolutions with people that were a long time coming.

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And in the End…

Last I wrote I had begun the medication and aside from the basic side effect of flushing & the fatigue which led to my dosage being lowered with the initial titration I was fine.
Then things changed swiftly. The first two days of the 240 dosage I was prepared for the worst, but it never occurred. The day after the first day was my daughter’s birthday party with her friends and we were taking the girls to a movie. It was within an hour of leaving the house that the first symptoms appeared. I felt nauseous & had to take a bag of animal crackers with me to keep myself from throwing up in the theater with five girls in tow. I made it through the movie and the rest of the party. However not long after everyone left I was curled up on the couch in the fetal position in pain. Later that night it passed and I made a point of going to bed earlier than normal so I could feel human.
Which the next day I did.

However that night I took my third 240. And within 2 hours something didn’t feel right. At first I blamed it on the really bad sangria I was drinking, which I had only had three sips of. However as things progressed, the night became worse. I couldn’t sleep, my stomach was in agony. My back was seizing. I spent the night feeling like hell, I didn’t sleep except for 45 minutes close to the time I needed to be up to get my daughter up for camp. I was hurting in a way I never felt before. The exhaustion was something I couldn’t deal with. I came home from dropping her off and fell asleep. But the pain woke me up again a short time later and at that point I called the doctor. I reached a nurse who after consulting the doctor called me back telling me that I needed to stop the Tecfidera immediately.

Now this is the first medication I had been on since my aborted attempts with the Avonex over 9 years ago. I had to go on this mainly because my eyesight has been the main failure with the MS after 25 of having it. I sometimes feel awful because I’m fully functional compared to so many of my peers. Sure I have moments, weeks even when I don’t think as well, or function as well as I should. But I know that I can run the trail with my dog or clean my house with abandon. And I feel guilty. I see and read the stories of those who can’t do half the things I can and I feel miserable.

However I spent so many years fighting this ridiculous illness and doing what I wanted because I knew that there would come a day that if I ever stopped fighting I would be succumbing to its hellish consequences. However since these initial feelings I’ve become connected with a community that has people who have progressed much further past what I could have ever thought. They feel the pain and limitation that I don’t have yet. And I say yet because there is always that chance. Someday it will, and might come. And probably will.

I knew it was bad that day when I called my husband at 2 pm in ridiculous tears. I couldn’t eat, lay down, sleep, stand up or breathe. He left work within 20 minutes and came home to me & to pick up our daughter from camp. He had never in all the years we were together heard me in this much pain. I couldn’t function. I wanted to soldier on. I knew that the drug was still new. Though it had been through trials it was still new. At least to the general population of MS patients. We’re the guinea pigs for our neurologists. As we go along dealing with this medication they’re learning about it. There are always certain side effects that are given however, this doesn’t cover the whole spectrum. There are always going to be side effects that occur that no one anticipated and others that reached a severity that wasn’t supposed to be documented.

But we’re the documentation.

The initial titration schedule with the Tecfidera goes as follows: 2 120mg a day for a week, after that one graduates to the 2 240 a day schedule. Now this is when things goes haywire for many. There are many that don’t feel the side effects after going through this change. There are quite a few who go through very severe GI side effects that choose to power through them no matter how long and hard they are. For some they last a few weeks, a few months.
There are those of us who look at this as being something that is non-negotiable. For me I spent that last 24 hrs of severe pain on the phone with my Neuro’s partner at 9 pm wondering what to do. He wanted me in the ER hooked up to an IV of a cocktail that would deal with the pain. I told him I had a chance to acquire an Ativan via my mother. Which is an anti-anxiety drug. He said “oh yes. Try that first, it might make the spasms subside. If they don’t, go to the hospital immediately.” By the time I called my mother back she was almost in my driveway. Within an hour of taking the Ativan I felt calmer. I still had the pain for three hrs afterwards. Then I slept for almost 8 hrs straight. And felt better.

The next day I felt a little better. I had more energy than I had the day the day before. My husband decided not to chance things, and called in to work explaining the situation. I left that afternoon to run an errand. That 40 minute errand proved to be the wrong move. A short time later we had to stop by my mother’s, then pick up our daughter from camp. By the time we arrived to my mother’s my insides dancing to that tune. I was in pain again. My mother put an ice pack on me when we arrived and while J went to get our daughter from camp I sat there with it on. By the time he returned back I felt much better. And as that night went on I felt even more so. I took another Attivan a few hours before bedtime. By morning I was a new person. Though by daytime I felt a little loopy. I felt stoned as evidenced by my conversation with my friend Jess. I sat in a parking lot talking to her laughing so hard she laughed. BUT I felt like ME again.

The next day the Dr. was finally back in the office and we talked about what to do. She admitted that what we needed to do was bring the titration schedule down to 1 120 a day for three months. Not everyone was responding well to this medication. It seemed that the schedule was not in tune with everyone’s GI systems. This was evidenced by what I had been seeing on this support group for the medication I was involved with. So many were reporting the same thing.

My family has this bizarre reaction with most medications. Particularly my mother’s side. We have what’s called “paradoxical” reactions. Our systems don’t match up to what we’re ingesting, and though the drug may cause only a few mild side effects it’s not uncommon for most of us to end up with the most extreme reaction on the first try. I’ve seen this happen with my mother, my brother, my aunt, and myself.

I can’t take a Tylenol sinus without falling asleep within two hours and staying asleep for nearly 16.

This has caused a conundrum for me when it comes to the caring & treating of this illness. This disease. I don’t know what to call it anymore. It’s just something that has made my life unusual & at times unbearable for well over two decades.
I will give myself a break( I have been this past week) and move on. I will restart the medication at slower dosage in a few weeks. Thankfully my doctor understood that I needed to take time off due to July being so busy.

I need to make clear here and now that not every medication comes with a warning label, and it doesn’t come with a label promising a cure. MS will not be cured. At least not for now. However with the rate things are going, I hope that perhaps some amazing discovery will occur that will lead a slowdown of symptoms and progression for those of us with this strange, and befuddling illness. I would honestly like to see a cure in my lifetime. I would like to prolong the inevitable. I would like to be able to see my children grow up, my grandchildren grow up, and the world evolve even more.

However our skepticism toward the medical industry needs to remain grounded & well fed only when necessary.

When something amazing presents itself, we need to grab onto it and give it a chance.

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The Simple Story

The adventure has begun. It began ten days ago on a sunday evening.

The little blue and white pills sat in their little black case waiting for me. The deal was that I would take them & they would slow down some of the symptoms and flares that had been taking place for a while. A long while. Way too long.

I stared it down. It didn’t move. It mocked me. I did what all the lovely people on the support group page told me to do. Take the 1 aspirin, eat, wait a little while, then take it with a lot of water. Enough water to keep a camel happy for a year. And I did most of that. Except take the pill part. Instead I stood there putting it in my mouth, taking it out, putting it in, taking it out. I was nervous. Terrified. I knew how much life would change. Then my 6 1/2 yr old piped up and told me to just take it “Do it for your health”. Who can argue with that? So I took it. And waited. For anything & everything. I was nervous so I walked around a bit. Cleaned a little. Then I remembered The Tonys were on and that took some of the worry away from me. Damn, Neil Patrick Harris should host all awards shows from now on. I really hope Tim Minchin wins a boatload of awards for Matilda. These thoughts kept me preoccupied. Then slowly but surely I was getting warmer. I couldn’t figure out what was up. I kept looking at the air conditioning system and adjusting it. Hmm It was 72. Why am I so hot? Took off my t-shirt & threw on a tank top. Husband & I sat down to watch Mad Men.

A short time later I was burning. The skin on my arms and chest were bright red & blotchy. It hurt. It was absolutely horrible, this was a worse feeling then giving birth. Which sounds silly but it was. I kept jumping up and down making these pitiful whining noises. A red rash popped up all over my arms, chest & legs. It hurt to walk. The feeling of fabric against my legs was torture. My husband tried to calm me down but that seemed to make matters worse, as I was in a heightened state. I quickly grabbed a wet towel and applied it everywhere. That seemed to take some of the stinging feeling away. I guzzled 5 glasses of water & took to the boards to the support group for advice. Thankfully the advice was much of what I was doing. Drinking 8 glasses of water seemed to bring it all down. Within an hour the flushing had subsided, however my legs still felt prickly & would remain so through most of the night.

This was my first dose. The next day went fine. Morning & evening went off without a hitch. No side effects. However tuesday morning was a different story. I took the medication & within 2 hrs I could feel something. I was a little dizzy, felt a little tired. More then normal. I was getting ready to take the kids to the local mall. I had promised them, they were excited to go use some gift cards. But within a mile from home I sensed the change. I was dizzier, and my eyes felt like rocks. My body suddenly felt like a paperweight. I could barely stay awake or feel anything. I made it another quarter mile to the local McDonald’s and grabbed food. Pulled over and the kids ate. I started tremoring. My left arm. Always my left arm. I argued with my mother who told me that it would pass. But I was terrified. I took a deep breath and decided to turn around and go home. I made it home and immediately came in and climbed upon the couch. I was tired. Oh so tired. I drank a huge diet coke to try and get some caffeine in my system. It’s not the best choice but I knew it would help me stay awake. Thankfully C is old enough to watch over his sister so I could try and get back to me. I did eventually feel ok. I had a second wind late at night with the night dose.

Which made me wonder if there was something to the way I was taking them. The first dose was a night dose & I had some energy with it. Morning doses seemed to make me a little sleepy, rinse lather & repeat. This went on the next day. And the following day thursday was the worst. I could barely function. It started with an argument with my contractor who basically went back on most of his word regarding fixing a huge issue his former company caused & screamed at me on the phone(my husband is still planning on dealing with him soon for that one). I was shaking. Then a family issue that had been going on was giving me such stress that my mother finally forbid my sister to talk to me about it & said that she wouldn’t talk to me about it either until things settled. I was that much of a mess.

It was by early afternoon when she called to check on me again & I could barely lift my head to the phone, and my words were slurring as if I drank a bottle of whiskey my mom knew something was wrong. She came and picked up E. She had her stay with her until J could pick her up on his way home from work. She even sent my stepfather over with a pizza for me and C. During this time I took to the phone and called my neuro. I told the nurse what was happening and when the Doctor called me back a short time later she said to just take one pill a day at night from here on out. Even when the dosage goes up to the 240. I did as she said and the next day I felt myself. I even made it to the mall with the kids. They had the best day. I even overcame my fear of drinking with this med thanks to some encouragement my by new friends in the group who were experts on the matter, and felt just fine. In fact the pill seems to go down better when an hour later you follow it up with a glass of wine.

This week I’ve been fine with the medication. Which is a far cry from my days with Avonex. I officially apologize to my husband Josh & to my ex/friend Matt for everything I put them through when they had to administer that bitch of a drug to me, and the anger I exploded with days following due to the horrendous side effects. I wish this pill had been around back then. Thankfully Josh , unless the 240 does a number on me down the line, you’re a very lucky man. Thanks for sticking around through this all. I know I give you options sometimes, but you never take me up on them. I love you for that.

I know I always said I would never go on these drugs. Or at least never give them a chance again. I’ve had some pretty strong things to say about them. And while things are going well with this oral drug, I’m still having reservations. With the rate my eyes are having problems(and for a writer, losing the ability to see is up there with death), I know I had very little choice. It’s been 25 years for me. And I’ve come off lightly compared to so many I’ve come to know and care about. There are just times I don’t want to put my body through the push and pull of the medications. However, if this keeps going the way it has then I’ll keep going. I want to see my kids grow up, and being the tough broad I am, I’m not giving up now. I’m going to stick around for another 40 or so years. That’s my goal. And I don’t give up, or let go, easily.

Before I go, I must say thank you to my new friends from this group. They’ve really helped me through the last two weeks. If it weren’t for them I may have chickened out and not taken the damn pill. Plus I’ve realized it’s nice to know that there are others out there who feel the way I do, and I’m glad to have them as my friends, current and future.

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The Wine becomes Whine

It’s late and I should be in bed.

The wind isn’t hollowing but with the tone of the evening if it were I wouldn’t be surprised.

The wine has been flowing and I’ve been wishing that it would never stop. However I now know that come Saturday it will. At least temporarily. Which is why I joke that perhaps I should change the name of the blog from “wine” to “whine”. Because for a while I’ll be on the wagon and dealing with something a bit more intense.

The new medication has arrived. It is currently safely ensconced in a nook on my countertop. Oh man.

It’s really here. It’s a pill. No shots. I haven’t done the shots in ten years. Or close to ten years. Maybe 9? They were so awful I’ve truly repressed that memory.

You all know my thoughts on the meds. I’ve gone off on them many times in the past year. Remember the time I said I would never change my mind on them? Ah yes, that was before I started having vision problems so severe I crashed my car into my husband’s. IN MY DRIVEWAY!! This had never happened before. And before those of you out there reading this who know me become frightened, I know my limitations. I have amazing days. Really good days where everything is normal. This was NOT one of them and I pushed my limits and I shouldn’t have been driving. I am under direct order(from husband) not to drive when I have these days from here on out. I’m stubborn, but he has a point.

Regarding the medication:
I’m prepared this time. I know what to expect. Mainly thanks to this awesome support group on facebook for those who have been on this particular medication or just about to start it. It’s new. It’s controversial, but the side effects are something I would rather deal with than those which I experienced with Avonex.

The pill, known as Tecfidera, is taken twice a day. The trials overseas and here have been rather astounding, many have had symptoms such as fatigue, weakness, and even vision disturbances improve after just a few days or weeks within taking it. Sure, it’s not without its side effects. Some will tell you of the flushing that occurs within a couple hours of taking it, or the serious G.I. issues which include symptoms you really don’t want me to mention.

Then there are those who will tell you they have little to none of these side effects. Which is awesome.

The great thing about this group is that those who have been on it the last couple months have learned what to do to prevent issues from rising. Such as taking aspirin a short while before taking the doses. Or taking certain gastro meds like Zantac to prevent those particularly horrible side effects.

This has given a lot of hope to those of us who are about to embark on this crazy journey with this medication that may really change the way that MS is treated. Maybe there will be this whole new generation diagnosed that will never have to feel the sting of the needle penetrating skin, and the flulike symptoms that follow. Who won’t have to deal with blood tests to determine whether or not they will develop a serious brain condition if they use an intravenous medication.

How Multiple Sclerosis is treated is being dealt an even hand finally.

I know there are some who have issues with this pill, but I’m hoping that it eventually changes and helps those like me who had given up, who felt there was nothing that could help them other than good old fashioned positive thinking.

I’ve had this nearly 25 years. Symptoms & diagnosis included. I’ve been positive for the majority of it. I’ve pushed my limits and figured I could kick its ass.

I may have reached that limit. And that’s OK.

Here’s to the next 50…

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