Life with MS & EDS

March 9, 2012

Gilenya Update

Filed under: Uncategorized — by mseds @ 9:05 am
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So, now I know why blogs about Gilenya were difficult to find!  There’s really nothing to report or complain about!  I started Gilenya over seven months ago and must say I love it.  I can almost forget that I have MS.  I pop a pill once a day and go on with my life.  I don’t need to set aside three nights a week for shots nor do I have to worry about keeping the next morning open in case of flu-like side effects.  Of course there’s no way to know if the pill is actually doing anything positive, but there are zero negatives to date.  I’ve not had any relapses, the eye doctor has monitored me for signs of macular edema (so far, so good), and my heart is great (had an EKG and echo cardiogram and the ticker is fine!)  My optic neuritis hasn’t improved, not that I expect it ever will, but it’s not gotten worse.  I’m not due for an MRI until this summer, so I won’t know until August about my lesion status.  Definitely cannot complain!

The hardest thing about Gilenya is remembering to take it!  It’s quite easy to forget, especially since it is so simple to take.  During the first two months, I missed a dose each month.  But, that brought me to a Sunday start-day for my pill packs and I really wanted to keep it that way to make things easier, so I came across a fool-proof method to remember to take the medication.  Put it with my dark chocolate stash!  Pick something you do every day or crave every day.  Put your Gilenya pack with it and you’ll never forget to take it!  I have a serious dark chocolate addiction.  I keep small squares of it in a kitchen cabinet.  So, that’s where my Gilenya lives.  It’s right next to the bag of chocolate.  I indulge in a square a day and that’s when I take the pill.  So easy!

I also owe updates on CCSVI and EDS, so I’ll try to get those thoughts together soon.  I feel like I’ve been hibernating from blogging all winter.  It’s time to get back to writing again!

October 24, 2010

Tucks – A Rebif Tip

Filed under: Uncategorized — by mseds @ 8:29 pm
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I’m so sorry I’ve not written much lately.  I’m quite far behind in things I’ve wanted to post.  I got a great tip about Rebif site reactions that I just had to pass along.  If your injection site gets red and itchy, get Tucks pads and rub it on the spot.  It stops the itching immediately for me and keeps the itch away.  It’s the only thing I’ve tried that works for me, so I had to share this tip!

August 4, 2010

CCSVI – A Few Days After Angioplasty

Filed under: Uncategorized — by mseds @ 8:34 pm
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I had intended to try to write every day, but have been quite busy and have had less time at my laptop than I expected.  Day 2 after angioplasty brought a trip to a new children’s museum with the family.  I walked around all afternoon, making myself sit down every now and again so that I wouldn’t push it.  I would have felt even more fantastic if it wasn’t the day after a Rebif shot.  I’ve decided that my Rebif side effects are even more annoying now that I know how good I can feel.  Rebif side effect on an already worn-out me were annoying, but they are far, far more annoying on the new me!  Although I take Aleve before my shot, when I stay up too long after my shot, I get the chills, my teeth chatter, and I feel awful.  This was the case Saturday night.  I’m so used to my fatigue sending me to bed early and have basically forgotten what the signs of “normal” tired feel like.  I did my shot at my regular time, but was so awake that I stayed up until 11:30.  Then I was suddenly nauseous (that was a new thing) and had the chills!  Whoops.  Note to self: ensure to go to bed within 1.5 hours of doing the Rebif shot.  I was nauseous again in the morning in addition to my normal fever of around 100 degrees and feeling achy and worn out.  Post-angioplasty is the first time I’ve ever had nausea as a side effect.  Lovely.

Okay, enough venting about Rebif and back to how great I feel otherwise.  Since angioplasty, I’ve had much more energy, my hand and arm strength have improved, my appetite has significantly decreased, and my sense of smell is far better than it’s been in years (yes, I know, that’s strange!)  Don’t get me wrong, I still get tired.  I was yawning away this afternoon.  I was hoping that my incessant yawning would go away after angioplasty, but it hasn’t.  It’s decreased, especially the first couple of days, but it’s apparently not gone.  I’m trying not to read anything into that!

One of the best things is that my stress is gone.  I’ve been feeling some level of stress since I first found out about CCSVI.  First I couldn’t wait to find out what my veins looked like.  This past April I finally got that answer.  Then I was stressed about finding someone to fix them.  Now that they are fixed, the stress is gone!  Sure, I’m a little worried about when/if they are going to close again, but for now I am really enjoying my victory.

I was quite interested to see how my neurologists were going to react when I told them I had angioplasty.  I know neither of them is on board.  Today was my six-month check up with Dr. Generalist (my local neuro.)  As I was sitting down in his office he asked me how I was feeling and if anything was new.  I opened with, “I had my veins fixed,” and he looked at me curiously.  I went on to tell him the story and about how great I was feeling.  Much to my surprise, he didn’t have a negative reaction.  He actually seemed interested.  I was his first patient who was persistent enough to not only do the research, but to do something about it and he was impressed by that.  I don’t think he’ll be sending patients off for angioplasty any time soon, but I think he’s going to be open minded and follow the research and how I’m doing.  I can live with that.

He also gave me a tip about managing Rebif side effects.  I’ve only been taking 1 Aleve (220mg) before a shot.  He said to try 2 Aleve one hour before a shot and to take another Aleve if I’m up in the middle of the night (which of course I am because I drink so much water before a shot that I have to pee by 4 a.m.!)  I’ll let you know if the extra Aleve helps at all.  Since he seemed to be in an open-minded mood, I decided to push it and asked about LDN.  I got the same response I got from Dr. Specialist — some seem to do well on it, but there’s no scientific proof, so I’m not on board with prescribing it.  Oh well.  One battle at a time.

July 14, 2010

Achieving Normal

Filed under: Uncategorized — by mseds @ 7:24 pm
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During my first quarterly Rebif bloodtest, Dr. Generalist had ordered a Vitamin D test.  As you may recall, I scored a 39.  I was told that was “normal”, but most online advice says you need to be over 50.  So, instead of keeping with my 3,000ICUs of Vitamin D daily, I added another 2,000, even though it wasn’t doctor-recommended.  My total daily Vitamin D supplement was up to 5,000, plus whatever I got from food (e.g., milk, Vitamuffins, etc.)  I absolutely noticed a difference in my energy level.  I’m still chronically fatigued, but I am no longer on the verge of tears because of it.  It becomes very obvious to me and my husband when I forget to take the vitamins.  I knew there was a big difference, but I didn’t have proof.

So, I brought this up with Dr. Specialist when I saw her last month.  I had asked her about Vitamin D at some point last year.  At that time, she wasn’t on board with its benefit and didn’t recommend blood tests to check levels.  She’s since changed her tune now that more evidence is out there.  She wrote a script to check my D levels during my 2nd quarterly Rebif blood work.  Sure enough, the results confirmed what I’ve noticed.  My level is up to 61, definitely over the 50 I was hoping to exceed.  The extra 2,000ICU daily brought my levels up by 22.  I wish everything was that easy to fix.

I’m enjoying my small victory and success with going against doctor’s orders to do something that was clearly in my best interest.

June 8, 2010

Kinesio Tape – Ankles

Filed under: Uncategorized — by mseds @ 8:50 pm
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When Little Sister was about a year old, her physical therapist had just taken a course on kinesio tape (a flexible, cotton strip with a very mild adhesive.)  We decided to try it on her stomach to see if it would help improve her muscle tone in her abdomen.  While it took a while for her to be able to sit on her own, we knew the kinesio tape was helping.  It was the strangest thing, but it even helped her constipation problems. We continued taping for about a year.  I got really good at taping her stomach.  We even used it on her legs.  Once she started moving around on her own, we stopped using it and threw the remainder of the large, expensive roll of tape into her closet.

I was looking in her closet last week and noticed the tape sitting on the top shelf.  I got to thinking.  What if kinesio tape could help my collapsing ankles?  I had the tape.  Why not give it a try?  So, I brought it with me to the chiropractor this week on the off chance he knew something about it.  Thankfully he did!  He taped my ankles and showed me how to do it.  He explained that the idea is to run the tape along the muscles.  Strengthening the muscles will help stabilize the joints.  That’s what seems to be a key component in managing Ehlers-Danlos.

The idea is to apply the tape starting at the ankle muscle to stimulate the muscle and run the tape up the leg.  For my application, we cut a strip of the tape approximately 7 inches for the front of my leg and 10 for the back of my leg.  Cut the strip down the middle, but keep the bottom 2-3 inches intact (see the picture below.)  Pull the backing off the tape from the bottom part and place it on the achilles part of the back of your ankle (you may need someone to do the back part for you, but the front is easy to do on your own.)  Then peel the backing off the cut strips and run them up the legs as shown below.  Make sure the tape is smooth.  You don’t want any bumps. For the front, place over the muscle in the front of the ankle.  Follow the nevicular (the nobby part on the outside of your ankle) around to the front of your foot.  The bottom of the tape should be slightly below there.

The down side of the 5 year old tape I have is that it’s not very sticky (not that kinesio tape is particularly sticky to begin with.)  This is great for my extremely sensitive skin, but it peels off pretty quickly.  I expect to be doing the taping every 1 – 2 days.  It’s easy to do, so I don’t mind.  I hope it will be worth it and that I’ll be able to walk around without my ankles giving out.  I’ll let you know if I see any improvement!

March 8, 2010

How to Spa with MS and EDS

Last week I was on a fantastic business trip in AZ.  Since I telework, it’s great to get to see my team, but it’s even nicer in a beautiful surrounding.  The resort and the views were amazing!

While I was there, I treated myself to a spa appointment.  Their list of services was so fantastic that it took me about 3 weeks to decide what to do.  I couldn’t fit in more than an hour, so that limited things.  I also knew I couldn’t take advantage of their hot tub or steam room, not without risking an MS flare-up (heat like that messes up my optic neuritis.)  I used to love to have facials, but rosacea has made those tricky and I wasn’t up for chancing it while on a business trip.  That narrowed the list down to massages and wraps.

I decided on a hot stone massage.  In general, it was quite nice.  I tend to get cold easily, so the hot stones were nice.  There’s something comforting about laying on a row of warm stones and having more piled on top of you.

At the start of the treatment I told the lady that I had MS, but didn’t mention the EDS.  I usually don’t unless someone really needs to know because it takes too long to explain.  Given that my symptoms are pretty low, other than the heat with MS, I hadn’t really thought of how a spa appointment would affect either the MS or the EDS.  I soon figured it out.  The problem was with the use of the stones during the massage.  My left shoulder blade area is bruised.  I guess anything even slightly deep tissue is a bad idea!!!

Lesson learned.  I think I’ll try a wrap next time instead.

December 3, 2009

Rebif – Day One

Filed under: Uncategorized — by mseds @ 9:10 am
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Yesterday was my first experience with Rebif.  The medication arrived on Tuesday and the nurse came to do training yesterday afternoon.  I must say that the MS LifeLines nurse was fantastic.  I liked her a lot more than the Shared Solutions nurse that came to do my Copaxone training.  In all fairness to that nurse, I think her main objective was to get me over my fear of needles and in that regard, she succeeded.  The Rebif nurse came in at a time when I was far more knowledgeable about MS and basically over my needle fear.  I just needed to get past my concerns about Rebif!

We had a great discussion about the differences between Copaxone and Rebif and how doing the shots was different, yet similar.  Here are some tips and observations I picked up:

  • The auto-injector is almost exactly the same, just different in color and the Rebif one is just long enough that it doesn’t fit in the Copaxone travel box while assembled.
  • The amount of medication injected for Rebif at its full dose (0.5 ml) is half that of Copaxone (1.0 ml).
  • Both Rebif and Copaxone are pre-filled shots with 29-gauge needles.
  • Rebif is a “live” shot whereas Copaxone is not.
  • While Dr. Specialist recommended taking Aleve ahead of the shot, the nurse said to start with Tylenol explaining that if I start with the strongest and don’t really need that level of medicine, then I’ll never know.  I can go along with that.  Also, but taking Tylenol first instead of Motrin or Advil, I can take Aleve later if needed.
  • Instead of doing the shot right before bedtime, the nurse encouraged me to do it closer to 7 p.m., as long as I was okay with the girls being awake during my shot.  Her reasoning was that if I am going to spike a fever after the shot, it’s better that it doesn’t wake me up.  She said it’s better to deal with that while awake, get the fever down, and then go to sleep.  That made sense, too.
  • Unlike Copaxone, Rebif should be massaged after the shot to encourage it to be circulated away from the injection site as quickly as possible.  This is another reason that using heat rather than ice after the shot is the routine.
  • Whereas Copaxone can leave a red, allergic reaction at the injection site (which happened to me often, especially on my arms), Rebif leaves a smaller, deeper red bruise.  She confirmed my speculation that this happens more often with the auto-injector, given it’s force, than with doing the needle manually.  Given my tendency to bruise easily and my translucent skin, we assume that I’ll see these bruises.
  • She reminded me that I need to get bloodwork drawn every 3 months to check my liver enzymes and thyroid levels.  I said I already have my prescription for that and will mark reminders on my calendar.  They already have a baseline from earlier this year when I had a ton of blood taken, so I can wait until 3 months from now for the first test.
  • Assembling the auto-injector was exactly the same as with Copaxone.  There’s one extra step – she said to flick the assembled auto-injector after that cap is pulled off a few times to make sure there isn’t any medication at the tip of the needle.  Medication on the tip will cause burning just like injecting into skin where the alcohol hasn’t dried.
  • We talked about injection sites.  I said I wasn’t willing to try my thighs after my bad experiences with them on Copaxone.  She said if I did want to give them a try again, to sit in a chair and bend my foot outward to relax the muscle to make it less likely that I’d inject into it.  That was a nice tip, but I don’t plan to ever use it!
  • I shared my injection site diagram that I developed for Copaxone.  She loved it and said I can keep using it.  I can improve upon it because the stomach is actually considered 2 shot areas, dividing the left and right.  Very nice to know!
  • She also recommended that I divide the rotation in half and do right side of the body one week and the left side the other week.  I loved that idea, so I’ll edit my rotation schedule for that.
  • Then we talked about timing.  She reminded me that I need to keep 48 hours between injections and that I need to fit in 3 a week.  At the beginning of each month, I’ll look at my plans for the month and can map out the shots.  I have a map for this month that avoids times when I’m on travel and that skips Christmas Eve and NYE!
  • She was very encouraging.  She said that I really shouldn’t have much side effects at the lowest level in the titration pack.  I’ll have 2 weeks at 8.8 mcg, then 2 weeks at 22 mcg before going up to the full 44 mcg.  She said that I may notice more side effects at the 22 mcg level, but that the real test wouldn’t be until the full 44 mcg dose.  She said about half of people get side effects and that most adjust within 6 weeks.
  • Lastly she reminded me that despite my really good attitude, that I need to watch out for signs of depression and to remind my husband to watch out for any mood changes (Nothing Knew, consider this the reminder.)

After the training we had an interesting discussion about CCSVI.  She was also really excited about it.  I said I was trying to search for a doctor who would do an evaluation for me, but that I wasn’t getting very far.  She mentioned the Buffalo study and I told her I already applied.  She encouraged me to keep an eye on news from the MS Society and other reputable sources.  I said I was frustrated with their slow response to this research and we talked a bit about why we think that is the case.  She did encourage me to write to my local chapter to ensure they know I’m interested in CCSVI and to inquire if they know of anything going on in our area with regard to research or treatment.  I’ll let you know if/when I hear anything back!

So, onto last night.  I had a meeting yesterday evening, so I didn’t get to do the Rebif shot until 9:30.  I took Tylenol about 30 min. before the shot.  Then I used heat (one of the Shared Solutions heat packs) for 5 minutes on my hip (typically an easy Copaxone shot location, so it seemed like a good place to start) and then alcohol.  Once the alcohol dried, I flicked the auto-injector to make sure there wasn’t any medication on the needle’s tip and then held my breath and hit the plunger button.  There was a surprising amount of pain when the needle entered my hip.  My husband was next to me on the phone with his aunt, so thankfully I watched my language, but wow, that didn’t feel very good!  Although, unlike the Copaxone injection, I had no pain at all after the shot!  I massaged it a bit and reapplied the heat, but it wasn’t very hot by then.

Then I sat and waited.  We decided to watch TV in bed, which was nice.  I was glad that I didn’t get any flu-like symptoms, but by 10:15 I noticed a strong metallic taste in my mouth.  It wasn’t as bad as the taste I got with Solumedrol, which made me want to eat a kitchen’s worth of food to quench, but it was not pleasant.  I fell asleep close to 11 and by the middle of the night the taste was gone.

I didn’t have a great night’s sleep, but I never do.  I won’t blame that on Rebif.  When I woke up this morning I had a strong pain in my left side.  I’ve been awake for 3 hours now and it is just starting to subside.  I sure hope this doesn’t happen every time!

I know I need to give Rebif a try and that it may take a few months for my body to get used to it.  It’s nice to not have pain after the shot like with Copaxone, but at least the side effects on that drug were easier to handle.  I’ll try to keep my positive attitude!  Who knows, with any luck, the CCSVI research will get rid of all of this or at least drastically change the way we treat MS.  I’m extremely hopeful!!

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