Life with MS & EDS

December 29, 2008

Drug Evaluation #3 – Copaxone

I interrupted our enjoyable holiday week with a viewing of the next pharma company’s materials. I picked Copaxone for Review #3. I received the replacement DVD (the one in their info packet was scratched) a couple of weeks ago, but have been putting things off. It’s been nice ignoring MS and focusing on the holidays. My vision is still blurry from the optic neuritis, but since the pain went away a couple of weeks ago it’s far less annoying.

Friday night I popped in the Copaxone DVD around 8 p.m. I figured I’d have plenty of time to watch it and make my well-know Death by Chocolate Trifle (I’m making it again for NYE, so I’ll post the recipe soon) for the family gathering the next day.

Unlike the Avonex DVD, it didn’t have separate options for newbies vs. those looking to switch drugs. You could either watch the whole thing or go chapter by chapter. I watched the whole thing, but later regretted it. There were useless portions that I should have skipped.

The format of the DVD was part talk-show, part infomercial. The combination made it feel patronizing (or as Hubby said, “treated you like you were an idiot”.) They targeted their pitch to the lowest common denominator and I somewhat took offense to it. They explained what a placebo was for goodness sakes! I suppose this is helpful for some people, but the woman just sounded demeaning.

The narrator (a Shared Solutions rep) started out with the standard pitch to newbies (you’re probably scared, being on therapy is one of the best things you can do, take charge, empowerment!) All good stuff, of course. The video progressed to an explanation of MS, which other than trying to pass off the standard electric cord analogy as novel was pretty good.

Then they moved to what criteria to consider when picking a treatment. Here’s where they lost my husband. They start “visiting” with various people who use Copaxone. I think that’s great, but they way they were doing it and the time of year I was watching it (just a day after Christmas) made us think of the Christmas Carol, “now we’ll visit with the ghost of Christmas….” Once we got past laughing about that, there was useful information to be learned here. They mainly focused on how the medication would be tolerated and how Copaxone doesn’t cause flu-like symptoms, that there’s an auto-inject feature, that it is proven over the long term (although the other 3 I’m considering can also make this claim), etc.

After that, they lose me again. They go into how Copaxone is “thought” to work. Apparently no one really knows. A neurologist tried to explain what they do know, which is that it has a unique way of working both inside and outside of the central nervous system (CNS). There was a claim that it stimulates anti-inflammatory cells (this could be a benefit given some of my other issues, so that was intriguing) and then enters the CNS. This is thought to somehow change the way the immune system reacts to MS. Although he was only speculating about how the drug works, this was a better explanation that the other DVDs I reviewed so far. I think I can get past the not exactly knowing how this work. I was told the same thing when I got my Mirena and it is doing its job (I’ve not gotten pregnant!), so perhaps it’s how well something does its job rather than how it does it that matters.

After this, they lose me for good. I didn’t get anything out of the DVD again until they got to the injection demo. They did a good job explaining the clinical trials, including an open-label follow on study. Then they dumbed it down to an elementary school level and took far too much time to explain things like what “placebo” means. I felt insulted.

Soon after this part, I finally arrived at Chapter 6. At the end of every other chapter, it refers the viewer to Chapter 6 for safety information. Perhaps that isn’t as annoying when you watch chapters separately, but when watched one after the other, I got sick of hearing it. I know they need to do things for CYA purposes, but there must be a better way.

Anyway, despite my annoyance with the video, the side effects sound like something I could tolerate. This is obviously the core of their message. The main areas of concern are permanent indentations (destruction of fat tissue) at injection sites over time (that doesn’t sound pretty, but no one other than my husband will see these parts of my body and he won’t care) and the potential for short-term (15 min. or less) trouble breathing, rapid heartbeat, etc. as well as the injection site pain.

Like the others, Copaxone has its own support system. Theirs is called “Shared Solutions.” They offered nurse support, financial assistance information, peer support (they have this thing that sounds like the matches made via a dating service!), injection training, knowledge resources, etc. All of the companies seem to offer the same kinds of support packages, so this doesn’t differentiate them.

These couple of chapters seemed to take FOREVER to get through. I finally got to the injection overview. I felt anxious when it started, but not as scared as when I watched the first injection overview (that was on the Avonex review.) They offered some useful tips like using a warm compress, a daily planner to keep track of spots, labeling the injection packets in advance for the week with the injection site to be used (I’m a planner, so I liked that idea), and so on.

The next thing I know it’s around 10 p.m. That DVD was far too long! I knew it was late, but didn’t realize it was that late! I didn’t have a clock around or I probably would have turned it off much sooner.

Despite their marketing materials (there’s got to be a better format for the DVD), I’m not ruling out Copaxone. The main reason comes down to side effects. Although I liked the Betaseron pitch a lot, I’m not sure I’ll tolerate the flu-like side effects. Betaseron’s well-done presentation was all about the “smallest needle” and “convenience” of not need to be in the fridge. Avonex’s pitch was all about the “convenience” of weekly shots. Copaxone was all about how well it’s “tolerated.” While the injection site reactions and the potential for the body to freak out a bit after each daily shot, I think it sounds more tolerable than flu-like symptoms that last longer than 15 min. of inconvenience.

I am also concerned about the potential liver and thyroid issues associated with the interferon drugs. Liver disease and thyroid problems already run in the family, so they don’t need any extra help. I also appreciate that Copaxone has something that will hide the needle in their Autoject device. I’ve read a couple of other posts where this thing has caused problems, but I’m so afraid of needles that this is a big plus for me (I’ve previously mentioned that I’m a wimp, right?) However, I’ve also read good reviews and one post had a particularly useful way to remember how to rotate shots. While I don’t like the thought of daily shots, is it really that much worse than every other day? I think I need to start a pro-con list.

Next I’ll take a look at Rebif. I never thought it would take a month to get through all of this, but taking my time is certainly less stressful. I have until my next neurology appointment on Jan. 7th to make my decision.

Note: I checked out the Copaxone website and noticed that they released a smaller needle, too. They are down to 29-gauge compared to the 27 it was at the time of the DVD (Hey, Copaxone marketing staff – when you update the DVD with this great news, you may want to move away from the off-putting, demeaning tone and infomercial format!) That puts it in range with the Betaseron “thinnest needle” which is at 30-gauge. (When it comes to needle size, the higher the number the better.)

December 21, 2008

It Could Be Worse!

Filed under: Uncategorized — by mseds @ 9:29 am
Tags: , ,

A year ago this weekend, my husband’s group of friends from college and those of us who married in gathered at UPenn’s hospital to say goodbye to a friend who was passing away. Karen lost her life on December 22, 2007 at the age of 35 after a battle against a very aggressive breast cancer. She was diagnosed in April 2007 and things quickly went downhill from there. She discovered a lump while nursing her then 7-month old daughter, who she called her angel, for without nursing her, she may not have caught it as quickly as she did. Karen was a fighter and her strength was amazing and inspiring. She left behind a loving husband and two little girls (ages one and three.) No child should have to lose a parent before they are even old enough to remember them.

My attitude since being diagnosed with MS is that it could be worse. Much worse. While my vision in my right eye is cloudy and I’m more tired than I should be, my little girls don’t see their mother suffering. There’s no reason to expect that my interactions with them will change at all in the immediate future. They don’t have to watch me suffer through anything like chemo or radiation. My time with them will not be cut short. I feel very fortunate that of all the things that could happen to a person, I just have MS. It’s far better than hearing something like “you have a kind of breast cancer that chemo won’t cure.” It puts things in perspective.

This year instead of gathering around a hospital room we had a holiday party at our house. About 40 friends and family came to celebrate the holiday season. It was great to be surrounded by loved ones, some of whom I get to see pretty frequently and others who I’ve not seen in years. We hosted a holiday party our first year back up here in 2006 and last year had to skip it because of Little Sister’s tonsillectomy, but I’m glad we’ve restarted the tradition and see no reason why it can’t continue for years to come. It’s nice to have things to look forward to.

I hope you all have a very merry Christmas and/or a happy Chanukah and a very wonderful and healthy New Year!

December 18, 2008

This is my brain…

Filed under: Uncategorized — by mseds @ 10:16 am
Tags: , , ,

This is my brain (Sagittal view):

Brain-sagittal view

This is my brain with white spots (3-plane loc view – whatever that means):

brain- with spots

This shows the larger white spot (I think) on the right side of my brain (Axial Flair view):

brain- axial view

I still don’t know if I am reading these things correctly, but I find it fascinating and want to learn more. I was trying to find photos of “normal” brains to compare mine against. My husband had an MRI two year ago and I thought it would be neat to compare what’s in our noggins, but his was on film, not CD (not sure why since they were doing CDs back then.) So, I searched around and found a site that explains Brain Anatomy. The pictures aren’t a one-to-one comparison, but it was interesting to see what the different parts of the brain are called.

Even with that, it only helped me understand the MRI report a little better. (Lisa’s comments a little while ago were more useful. Here are excerpts from the ’08 MRI report:

  • Discrete high signal intensity lesion in the right peritrigonal white matter measuring approx 1.7cm
  • Several discrete high signal intensity lesions specifically in the left frontal periventricular white matter, right frontal subcortical white matter, left parietal centrum semiovale and subtle high signal foci in the left frontal and right posterior parietal periventricular white matter.

If anyone can explain this in plain English or point me to a place that does, I’d greatly appreciate it! Next time I am at the neuro’s office I’m tempted to ask him to pull up the images in the CD. It’s kind of like looking at a baby’s ultrasound picture and having a nurse say, “oh, those are the kidneys” and you are staring at it and having no clue what you are looking at. At least then they have the image up and you are right there and they can point things out. Eventually you notice something that looks familiar, like an arm or a foot and it is so cool. Now I can look at other people’s ultrasound pictures and be able to recognize things. I’d like to get to that point with understanding brain MRIs and it doesn’t seem like you should have to go to med school to know what you are looking at in a picture. I want to understand what’s going on inside of my head. The MRI report was obviously written for a doctor, not a patient. They should provide plain-English details for the patient, too. Hopefully the doctor will take the time to show me some of this at the next visit.

Oh, the report does mention that this could be something else, but the Lyme test I had came back negative. So much for getting to blame this all on a tick!

December 13, 2008

What a Difference a Year Makes

Filed under: Uncategorized — by mseds @ 8:00 am
Tags: , , , , ,

A year ago today we were with Little Sister in the emergency room. She had her tonsils and adenoids taken out a week and a half earlier. The first day or two after surgery went well. Other than refusing ice cream in favor of dry, crunchy things like crackers and granola bars (texture issues are a common difficulty with kids with hypotonia), refusing to drink, and having to wake her every 4 hours for pain medicine, things were going pretty well. Then the areas started to scab and it was all down hill from there. Each day she ate less and less and eventually she wouldn’t eat at all. I offered her ice cream or milkshakes breakfast, lunch, and dinner, but she flat out refused. At this point I questioned if she was really my kid! We tried yogurt (typically a favorite food), but she refused. We tried everything we could think of, but she refused everything and was barely drinking.

I suppose it shouldn’t have been a surprise that when I called the doctor they said to get to an emergency room to get her re-hydrated. We tried to get down to CHOP where the surgery was done, but ice was falling from the sky, so we went to a local emergency room instead. Thankfully they were pretty good with her. Little Sister got much better after getting the IV and a stronger pain medicine. After that we were able to cut back on the prescription pain meds and she also started eating more. The next day she drank a whole 9 oz. and yes, that was considered fantastic progress. Talk about a rough few weeks.

Her surgery was on the first night of Chanukah last year. It was a pretty rotten Chanukah. Not even presents every night could cheer her up. Thankfully she was much better by Christmas. (We’re an interfaith family, so we celebrate both.) Although it was a very rough few weeks, I’m very thankful that we did the surgery. She has been so much healthier since then. She no longer gets 105 degree fevers every six weeks. We made it through a whole year without going to an emergency care center! She gets over colds much more quickly. She finally started eating more (she didn’t eat much before the surgery, so I suppose we shouldn’t have been caught off guard when she wouldn’t eat during recovery.) She completely stopped drooling. We finally have pictures of her with a dry chin! Not only that, but her speech improved dramatically over the next few months.

Thinking back to that day reminded me that CHOP is doing a genetic study of approximately 100k patients over 3 years, along with some of their parents. They hope to compare the genetic markers of children to see if they can isolate root genes for certain symptoms and disorders. At the time Little Sister was still undiagnosed. She obviously had hypotonia, but we didn’t know what was causing it. So, I volunteered myself and my husband to participate. While Little Sister was waking up from surgery, a nurse took a teaspoon worth of blood with a tiny needle. She had just had things removed from her body, so I didn’t think anything of giving that little blood. Now that she has the EDS diagnosis, hopefully this information has made it back to their study. Now I need to figure out how to let them know about my MS diagnosis, although I’m not sure they’ll track this since it tends to affect people outside of their target age bracket.

I hope things are going well with their study and that they are making some progress in identifying genetic links. There’s so much promise in genetic research, but I am concerned that healthcare policy and big business are going to slow down progress. When we were trying to diagnose Little Sister, we agreed to a Karyotype, which studies the chromosomes and can help in diagnosing or ruling out many disorders and syndromes. Her Karyotype didn’t show anything, but that just means it ruled out things the medical community has already traced to a gene and figured out how to test for. We were offered the opportunity for a full genetic mapping, but declined. We were concerned that the information it would reveal could some day lead her to being denied health or life insurance. Our country’s laws have not been keeping pace with medical innovations and advancements and that causes great concern. I hope that some day solid rules barring genetic discrimination will be the law of the land, but in the meantime, businesses don’t have to insure people they know will cost them lots of money. Preexisting conditions make it extremely difficult to change jobs or insurance plans or even obtain decent coverage. I’m extremely fortunate that I don’t need to worry about that as long as I keep my current job, but it angers me that this is a major issue for so many Americans.

This post started as a reflection of how well Little Sister is doing and morphed into expressing distain for medical policies in our country. Sorry about that. It’s frustrating to be living in a time where there are so many medical possibilities that are being constrained by antiquated and unenlightened legislative policies. I have high hopes that things will change over the next four years, not just for the promises it could bring Little Sister or me, but for the millions of people struggling with or dying from diseases we should be working to prevent.

December 11, 2008

Trying to Get in Alignment

I had my first ever chiropractor appointment yesterday. I’ve been complaining of hip and neck pain, so my husband suggested making an appointment with a dr. his family has used for years. Other than getting slightly lost on the way there during a rainy day and a longer than expected wait, it was a great appointment.

It was confirmed that I am very bendy. It was kind of weird to have the confirmed by a chiropractor. My range of motion is far greater than the average adult. It’s even greater than I thought in my hamstrings, which I always thought were tight. The best part was that the dr. was very knowledgeable about MS and EDS! I got a lot of good advice, but was pretty tired, so hopefully I can remember it.

I learned:

  • I shouldn’t have Chinese food (avoid MSG and high sodium foods, including those with soy sauce)
  • Sushi is a good thing
  • Wild salmon is better than farmed
  • I shouldn’t be walking around barefoot all the time (he asked if I wear supportive shoes and it occurred to me that I spend the majority of time at home and I don’t wear shoes in the house)
  • I should be taking fish oil supplements that are higher in docosahexaenoic acid (DHA) and that aren’t processed using alcohol
  • That repetitive exercises are best (e.g., rowing machines, elliptical trainers, etc.) and that I should work up to 30 min. a day, 4 days a week; starting at 10 min. per day at the lowest setting on the elliptical is my goal (remembering to stop when tired and not push it too hard)
  • I should try to get back to doing water aerobics, but water temp is a challenge for me. It can’t be too cold (EDS – feet cramp up) or too warm (MS – aggravates symptoms). (I’m still searching for a pool that has evening classes if anyone knows of one. The pool I usually use is currently closed.)
  • When doing yoga, focus on balance
  • Keep using my headset when on the phone so that I don’t strain my neck
  • Walking on the boardwalk is much better than walking on cement (but I already knew that one)

While he wasn’t able to do an alignment where I need it most (the top of the spine called the “cervical spine”), he was able to pop the top rib back into place (trying not to think about that since it grosses me out.) It popped back in place very easily, which makes sense given my connective tissues issues. He was also able to help better align my hip (that had something to do with the sacroiliac joint or something that sounded like that, but I don’t recall the details.) Unfortunately, the dr. is limited by what he can do on someone with EDS. But, I’m extremely glad that I found someone who knows about treating someone with EDS and MS and knows what he can and cannot do. He even does the MS 150 each year. I’m seeing him again next week. It’s a good thing Little Sister’s extra therapy sessions are ending this month because it seems like I am going to have more of my own appointments going forward.

December 9, 2008

Avonex and another Term I Don’t Like

Filed under: Uncategorized — by mseds @ 9:57 pm
Tags: , , ,

Well, I tried to review Capoxone next, but the DVD was scratched, so I moved onto Avonex since a friend is taking it. The DVD worked, so I was off to a good start.

The DVD has two options, one for those just starting out and one for those looking to change their treatment. I chose the first and never got to the second. There was “fine print” on the start screen that some of the people were “sponsored by Biogen Idec”, which made me feel like this was less genuine than the Betaseron video (I don’t remember a similar caveat there.) A company rep narrated the whole thing which made it less personal and more like an infomercial.

It was comforting that this has been around since 1996, that over 130,000 people are taking it, and that it’s the #1 prescribed drug worldwide.

It started with a general overview of MS which shared only very general info. Then they had a handy comparison chart:

Avonex compared against the other main MS drugs

Avonex compared against the other main MS drugs

Unlike Betaseron which was all about “the smallest needle”, Avonex is all about the convenience of “once a week.” My friend did say that she liked that she only had to remember that she has MS once a week when she does her shot, which I thought was a good way to look at it.

They talked about their impressive track record at slowing the progression of MS. Then they started talking about white spots and reducing brain lesions (there’s that word again.) After that they said an even more horrific term – “brain shrinkage.” This was the first time I heard this one and I dislike it even more than “brain lesion.” They talk more about it in their printed materials, but basically it’s brain atrophy (not any better) where you loose brain tissue and it’s replaced by fluid. If they are trying to scare me, they are doing a good job. I’m just not sure it’s scaring me the way they intend as I’m leaning away from trying their medication (I’ll get to why in a bit.)

I also learned about neutralizing antibodies and how they can decrease the effectiveness of MS drugs. Avonex has a low percentage chance of this happening, which was good to hear. I’ll have to remember to find out if the other medications fair similarly.

It wasn’t until this point that they brought up that it is an intramuscular injection. It was smart to wait until this far into it, although the graphics used draw attention to this earlier. They tried to comfort the viewer by reassuring them that the most of the pain felt with injections is closer to the surface of the skin anyway. They also talked about the flu-like symptoms, but those typically pass after a few months and didn’t seem to stop people from taking the medication.

Then they move onto “Living with MS” and talked about their support options. They have people that will help you with things like financial assistance, insurance benefits, prior authorization, nurse support, online mentors (other people with MS who can help you out), live events, etc. They assign a personal case manager to get you started and then you scale back to a therapy support coordinator. They didn’t seem as warm as the BETA Nurses, but they did seem to have a good support system in place.

Here’s where I should have stopped watching the video. Have you ever watched “A Baby Story” on TLC? Well, before I gave birth to Big Sister, I’d always watch that show, but would turn it off the moment the woman went into labor. I didn’t watch a single episode from start to finish until after I had her and have yet to keep one on where they do a c-section. Why? Have I mentioned I’m a wimp who is EXTREMELY squeamish?!?

The next part of the video was about the injections. I was curious, so I kept watching even though I should have turned it off. If my husband was home I’m sure he would have encouraged me to stop watching. Nevertheless, I kept going. They have two options for this part of the video, too. One was for the prefilled injections and the other was for the powered form that you mix. The later sounded too confusing for the time of night that it was, so I went with the simpler, already mixed version. They start off trying to be reassuring, saying that thousands of others are doing this, too. It was the “you’re not alone” message.

It gave basic information (it needs to be kept in the fridge, but can be at up to 77 degrees for so many days, never freeze it, how to transport it when traveling, etc.) and some tips (let it warm to room temperature for 30 min. so that it’s more comfortable to inject, ice the injection spot, etc.) There are two needle size options, which I didn’t know before, but I guarantee the smaller one is for skinny people (I’m just guessing.) They note that the best places to do the injection are the middle of the thigh or the upper arm (if someone else can give them to you), they stress rotating the injection spot, and noted not to inject into scars (I’ll have to remember that since I have one in one of those areas.) Then they tell you to relax since it won’t be as painful that way. Okay, that wasn’t comforting. I was tempted to turn it off here, but kept watching. They then say to use a “quick motion” to do the injection, but what I saw was STAB YOURSELF. Oh, then they say you’ll feel resistance and that it’s normal. Really, I didn’t want to hear that either. They wrap up by saying just wipe away any blood. Okay, at least they were done.

They remind you to take time to process what you’ve heard and to talk things over with a doctor. Then they move onto the important information at the end. They note that the medication can make you feel “unusually sad” and that if you feel “sad” to tell someone right away! Lovely….

With that I moved onto the printed materials. The nice cloth zippered binder strangely avoided using the word “Avonex” in favor of using the company name “Biogen Idec.” Even the cover didn’t say Avonex. The contents included a pen, personal journal (with stickers!), a wallet card with their 24/7 toll-free number, product guide, and three spiral books (1. Questions about MS; 2. Treatment Options; and 3. Start on Avonex Now.)

The binder (and DVD, too) stressed early treatment, although not to the same extent as Betaseron. There was a whole thing about “brain shrinkage” again. Just wonderful. They also included the Expanded Disability Status Scale (EDSS) which was somewhat interesting and somewhat depressing.

Expanded Disability Status Scale (EDSS)

Expanded Disability Status Scale (EDSS)

The interesting part was that there is hope for MS patients now whereas before ending up as a “9” was much more likely. Even if Avonex isn’t the one I go with, I imagine most of the medications keep things in that 1.0 – 2.0 range now within 5 years. Heck, I’ve likely had MS for at least 5 years already and I’d place myself at a 1.0. That’s without the medication. With medicine I expect I’ll be able to stay in that good range for a long time.

So, the Avonex material was not as comforting as the Betaseron pitch, but I’m not ruling it out just yet. Really, I should NOT have watched that injection part just yet. I think that was too soon to see.

Avonex Handbook

Avonex Handbook

10 Pain-Causing Foods

Filed under: Uncategorized — by mseds @ 9:27 am
Tags: , , ,

ABC News recently posted an article about 10 Foods That Bring on the Pain. My EDS diagnosis made a whole lot of sense to me because it explained why I’m getting joint pain and reflux.  It’s no surprise that foods can trigger pain, but I was surprised by some of the things on the list.

Cause: High acid content

Result: Acid reflux or heartburn
Impact for me: I can’t cut out tomato sauce, but if I forget to take a Zantac 150, my reflux is horrendous.

Citrus Fruits
Cause: High acid content
Result: Acid reflux or heartburn
Impact for me: They got this one right on for me. Citrus = horrible reflux. I didn’t care for it one way or the other, so I cut it out years ago.

Cause: High fat content
Result: Arthritic pain
Impact for me: NONE! I stopped eating red meat and pork when I was 12 years old. Thankfully poultry isn’t on this list!

Cause: Arachidonic acid (in the yolk)
Result: Same pro-inflammatory agent as in bacon; increased inflammation and joint/arthritic pain.
Impact for me: Wouldn’t have guessed this one!  I suppose I need to use more fake egg products since eggs are a favorite meal.

Cause: Saturated fat which raises cholesterol or the protein found in cheese
Result: Increased arthritic pain
Impact for me: This surprised me, too.  I won’t cut it out, so reduced portions and lower fat content are the best I can do.

Soft Drinks
Cause: High sugar
Result: Increased inflammation
Impact for me: None, I don’t drink soda. Mainly because I don’t like it, but also because carbonation causes horrible acid reflux for me (something the article didn’t mention as an issue.)

Cause: The chemical phenylethylamine
Result: A nasty “chocolate hangover” (the articles words; not mine.) But the impact depends on the person and the amount of caffeine in the chocolate.
Impact for me: None (perhaps because I refuse to believe someone so amazing can be harmful in any way.)

Cause: Sulfites? Nope, not unless you are allergic. The real culprit is the amino acid tyramine.
Result: Migraines
Impact for me: None, thankfully I don’t get migraines.

Processed Meat
Cause: Nitrates, high cholesterol, high fat
Results: Increased arthritic pain
Impact for me: Not sure. Unless it’s a 100% while meat turkey dog or veggie dog, I won’t go near hot dogs as their potential contents scare me. I’ve not noticed increased pain from the ones I eat.

Junk Food/Potato Chips
Cause: Saturated Fats
Results: Increased inflammation and arthritic pain
Impact for me: None. I’m not a big chips person.

So, while I refuse to give up chocolate, I may think twice about having a cheese omelet (a favorite meal, but life can go on with less of it.)

Next Page »

Blog at