06/28/13

I had my 6 month check in at UTSW last week. I met my new doctor. I really liked her….it was a full 2 hour visit and she asked lots of questions.

After a battery of tests, she said I was perfect! Then she added, well except for that one big lesion. It’s the same one they’ve been watching. It hasn’t grown at all and there is no new activity.

In other words, I’m doing great!

05/27/13

I’ve been feeling just fine! I danced at Scarborough yesterday…I went ahead and took my pill in the morning. No real issues! I had a bit of an upset stomach when I first arrived but it was before I put my costume on and I didn’t have any other issues all day 🙂

I felt great at the end of the day, even as the other dancers were fading and complaining about how tired, hot and ready to go home they were. It was a wonderful day!

Now, I’m off to Thailand! I took my meds a little over an hour ago and feeling great! I guess I should document that I am having the full gamut of symptoms though. No real “sickness” like before but I do seem to have a mild rash that pops up and I get real itchy! Mainly itchy on my scalp but also on my chest….It seems to wake me up in the middle of the night. If I rub cocoa butter on my skin it alleviates it almost immediately. Too bad I can’t rub cocoa butter all over my scalp!

Anyway, just wanted to let you know things seem to be good now. 🙂

So, now I am off to find a good Thai restaurant……

05/25/13

Well, so far so good! I haven’t been truly sick since Wednesday!!! A bit queasy perhaps and uncomfortable at times, but not sick. Itchy, but no major rash. Even the hot flashes don’t last all that long. I will continue to take the meds. I will even take it in the morning before I head out to Scarborough for the day….

Wish me luck!!!

05/23/13

Saturday night, I slept thru the night and had no side effects whatsoever!

Sunday, about 2 hours after taking my pill, I felt piqued and flushed, a little nauseated but it passed within about an hour after starting and the rest of the day was good!

No side effects at all on Monday or Tuesday!

Wednesday….well, that’s another story. I was about to leave the house about an hour or 2 after taking my morning pill. I was feeling a bit queasy so I decided to stay in for a bit. Glad I did! I was throwing up within the next 30 minutes. It was one of those days where my stomach was just uncomfortable and yucky all day long. When I took my nighttime pill, it kicked in about an hour afterwards…I became very queasy and didn’t feel wall at all. Before I knew it, I was throwing up again. Funny though, after throwing up this time, I felt much better. No more discomfort at all! We watched a 45 minute Netfllix show, went to bed and I woke up just fine.

Today, I took my pill and about 1 1/2 hour later, I felt “odd” for just a bit but nothing major happened. Now, nearly 4 hours later, I feel completely normal. Weird! I feel so much better than I did yesterday. Hopefully this feeling will last this time….

05/18/13

Symptom update:
Thursday night, I took my pill and went to bed. 3 hours later, I was awakened with my belly on fire…tried to throw up, nothing really and 1 bout of diarrhea. Went back to bed and slept through the night.

Friday morning, took my pill and 2 hours later my belly was on fire again. I didn’t throw up but was doubled over in a lot of pain and of course, the diarrhea again. I took a nap and didn’t get a whole lot done. I danced 2 shows at Byblos that night. The first show went really well. There were great crowds and the place was packed. The second show, I was pretty tuckered out but I had a big group to get up and I let them dance a bit. They had a lot of fun and I was able to take it easy! I haven’t eaten much so I’m sure that had something to do with it. I am forcing myself to eat some “proper” food to keep going and have had a lot of gatoraid and water to keep my electrolites up.

Friday night, I took my pill and two hours later, once again my belly caught fire and woke me up. I had 1 bout of diarrhea but not nearly as much pain. Each pill, the symptoms have lessened in severity….hopefully this is a trend!

Today, Saturday, I did not take my pill this morning. I performed at Scarborough Faire all day. 5 shows starting at 11:30 am. I couldn’t take the chance of a restroom emergency or being doubled over in pain. I felt fine all day! I actually ate and I got hungry again at dinner time! It sure was good to feel good!

I took tonight’s pill about 30 minutes ago and so far so good….hopefully I’ll get to sleep through the night. I’m not counting on it though!

Goodnight all…I’m tired. I’ve danced hard but it all has gone well.

05/16/13

Well, this is day 10 of taking Tecfidera. The 1st 7 days I took 120mg twice a day and then it jumped to 240mg twice a day. I didn’t feel anything at all (side effects) in the beginning. The hardest thing has been taking it at consistent 12 hour intervals! At first, I thought I’d take them at 9a and 9p. That suddenly changed to 10 and then before I knew it, it was 11 and 11. I’d just forget at night or get tied up or whatever. Between my dancing schedule and regular rehearsal schedule, 11 is the most available night-time choice. It works well with my crazy flight schedule, too.

I’ve been having a bit of indigestion lately, but not much, nothing too bad. Yesterday, I was experiencing stomach pains most of the day. I hadn’t been eating in my normal way since the weekend due to a Scarborough celebration dinner, mother’s day restaurant outing, flying, a New Orleans layover, etc. I’d gone from overeating and strange foods to also not eating. I wasn’t sure if these stomach pains and nausea were a part of all that crazy-ness or what.

This morning, finally at home, I took my pill at 11:15 and by noon, I was having some pretty good belly aches! I was telling Ken it felt kind of like food poisoning and I was real nauseous . I’d eaten some week old leftovers the night before and wondered if that could be it. Now mind you, I have a gut of steal. I can eat almost anything and not get sick…old food, warm food that’s supposed to be cold, fresh vegies and salads in foreign countries, food cart things, even strange taco things out of a bucket on a bus in Belize. Anyway, this morning I ended up in the bathroom with first diarrhea, then vomiting followed by more diarrhea. As long as I stayed perfectly still, I felt ok but movement would bring on the nausea again. I only had that one episode in the bathroom and a few hours of taking it easy and I was feeling fine again.

I did some more research on Tecfidera and have read that the symptoms dramatically decrease after a month or two. I’ve also read that they can come and go in intensity the first month.

Oh, did I forget to mention the other common side effects are flushing, redness, itching or rash? Well, when I danced at Scarby on Saturday, Del (Isis’ husband) kept commenting on how red I got during the show. I had wondered earlier in the day when I glanced in a mirror and thought I looked a bit red. I asked Kede, with whom I’ve danced for many years, if I were more red than normal and she said no, I wasn’t. I’ve always turned quite red…more than your average person, so that didn’t seem to be too unusual. Last Sunday night, after taking my pill and trying to go to sleep, it felt like my head was totally on fire, from my neck up. It was pretty intense but only lasted for about 30 minutes or so. I’ve experienced that sensation again on other nights but not nearly as intensely and it seems to go away fairly quickly.  I’m just documenting my side effects here as kind of  a journal…

Here’s hoping that the nausea, vomiting, diarrhea, stomach pain, indigestion symptoms don’t spring up at Scarborough this Saturday while I’m at Scarborough! We have 5 shows starting at 11:30. There are only 2 more weekends to go and I’ve been doing great so far. Scarborough is not the kind of place I’d want to have to figure out which end needs to go into the toilet!

Hopefully today will be the worst of it and I will be feeling much more “normal”…whatever that is!…from here on out.  I’m still very happy I don’t have to do those terrible injections any more and I’m sure things will be much better soon. If I can make it through the next couple of weeks, I should be home free. The efficacy rates with with new drug are very good. I’m going to hang in there!!!

05/01/13

I took my first pill today!!!! Tecfidera has finally arrived!

I did not post here all of the hoops I jumped thru, nor all the balls that were dropped that I picked up. It was a very frustrating process to finally get the meds delivered, but all’s well that ends well! The cost for my 30day starter pack was 4063.00….good thing I have insurance – my deductible is only 180.00!

Finally! No more shots and a more effective medication!!!!

04/11/13

So….I faxed my application into my doc for Tecfidera on March 29. They received it. I gave blood for labwork on April 2. The results were very good and back in by April 3. I have been anxiously awaiting the phone call from Biogen to set up delivery of my new meds. When I still hadn’t heard anything yesterday, I decided to ask my doc if she knew anything. I was given a number for Biogen to check the status of my application. Low and behold, they never received it! Evidently, my doc faxed in 8 applications at once and 2 of them didn’t go thru…mine being one of them! I re-faxed everything last night, my doc spent quite a bit of time on the phone with Biogen and hopefully, I will get a call soon to set up delivery!!! I am so glad I called to follow up!

I have 1 needle prick left. I’ve been taking my daily meds once every 3-4 days lately. I’m looking forward to sticking myself and all the drama that goes along with it one last time tonight. I won’t miss it at all…I just wish I had my new meds to take in its place!

I’ll let y’all know when I get to start the new oral drugs…it’s going to be soon now, I hope!

3/29/13

Dimethyl fumarate has won FDA approval to treat relapsing-remitting forms of multiple sclerosis and will be sold under the name Tecfidera. TECFIDERA has been proven to significantly reduce important measures of disease activity, including relapses and development of brain lesions, as well as slow disability progression over time, while demonstrating a favorable safety and tolerability profile.

I’m filling out my paperwork! Yeah!!!! 🙂 No more daily needles!

Iwill fill in with more details as I get them. I need to go have my labs done and fill out a bunch of papers and fax them back to the doc. Hopefully I will know more by the end of next week. As for right now, I’m going to go poke myself with a needle…

03/13/13

Boy, I love this date! Maybe today will be my lucky day! 🙂

Not much new really to update…I’ve been working a lot. I went from late sign-in/go to bed super late for a many months until the end of February to suddenly early sign-in/get up super early (actually in the middle of the night: 3 and 4am on top of DST!) in March. It’s been quite a switch I’ll tell ya! Also, the way the months overlap with scheduling, I had to flip flop while covering 6 days in a row with long 14-16 hour duty days and super short layovers. Somehow, I survived. It took me two days of sleeping but I’m sorta back to normalish…maybe…

No real new news. Just heard from my doc the FDA is supposed to meet towards the end of the month to approve the new oral medication BG-12 (with a proper name yet to be announced). The problem is, I only have enough Copaxone to last until the 28th of March. There will be a short time lag between approval, getting my script and insurance approval and delivery to my house. But, if all goes well, I should be popping pills instead of poking myself with needles sometime in (hopefully) early to mid April. I really don’t want to refill the $13000.00 script for Copaxone! Don’t yell at me, I post here for my own personal recording of things as much as to inform everyone and to get feedback so I think I need to put it down here in writing…I plan on shooting up every other day or so rather than every day to extend the life of my current supply of copaxone until mid April. The cost of Copaxone is ridiculous and I am so over the pain of the needles and disfiguration. I just don’t think I can justify the cost! What is a few days going to hurt…it’s not as though I’ll be going cold turkey and without for a prolonged period. It’s not like insulin is in controlling diabetes. It merely slows the progression of the disease and has only a 33% efficacy rate. If you are in remission, there is no progression taking place anyway. I don’t see how reducing dosage for a couple of weeks can really do that much harm in the grand scheme of things…I promise I will take my pills faithfully when I’m get them. And, they have a 55% efficacy rate! Here’s looking to the future!