New Rx: making the move to infusion meds.

It has been quite some time since I’ve posted anything, but things have been relatively stable…

I experienced my second instance with optic neuritis. Yet again, my right eye took the hit, but this experience was different than the last one. The best way to describe it  was how the upper right quadrant of my vision had a thumb smudge in my visual equity.

Casey and I were finalizing our NZ trip plans (2/13/2021-4/1/2021), and about 4 days before we were scheduled to leave I was scrambling to get things figured out. Luckily I was able to get an appointment with an amazing ophthalmologist. It took about 3 months, but my temporary vision & color blindness scare is gone and things are back to normal. 

Ohh yes, and I’ve finally been able to find a new neurologist! The new doc has a focus is on multiple sclerosis 🤩 

I wanted to share an update/change  on my multiple sclerosis medication from the oral Rx to the TYSABRI infusion. My infusions are every 6-weeks, and last two hours. The first hour is for the actual infusion, and then an hour for observation.  I’m able to schedule future infusion appointments, which helps with any travel planning and what not. My first appointment was the morning of Friday 7/9/2021.  I find the my infusion appointments relaxing, and I feel great after too.  I like to think of the 2-hour appointments to treat myself, where I can used the time to  bring something to read, listen to music, nap or do nothing.

To my surprise,  I received a gift in the mail from Biogen, the maker of TYSABRI. The box contained some reading material, a book (Faces of A Fighter) from fellow TYSABRI infusion fighters and some useful cool accessories to take to the infusion center:  a sleek 17oz water bottle, orange fuzzy blanket and a heating/cooling pad. All of the 3 accessories have an encouraging saying on them. 

An interesting read...great perspective!

I stumbled across this article last month and wanted to share it with you:

Invisible MS Symptoms Are Real, Whether or Not Other People Believe Us

Exacerbation lingering.

Just a quick update: Unfortunately, the symptoms of my exacerbation are still occurring, but they've gotten better..... slowly.  By better I mean the numbing and tingling sensation on my feet is pretty much gone, and I have more sensation back on my face and tongue but I'm still waiting for the numb sensation to be gone completely.  Slowly but surely, just have to continue being patient  :)

This may sound a little bizarre for me to say I was glad there was an active lesion seen in the MRI, but because of that finding, I gave good reason for my sensations and how they may be temporary. Had there not been an active lesion and I was still having the symptoms would have been a bit more disheartening because I may have been stuck with these symptoms for the rest of my life, who knows.

Medication update: Tecfidera is working well - Sunday will be on mark my third month/refill.  Turns out I do not need to eat before I take my AM & PM capsule.  I am also not making the monthly visits to Kaiser's Pharmacy to get the MS medication as Tecfidera is delivered via FedEx. Sure, I have to schedule the deliveries, due to the temperature sensitive RX, but the cannot complain too much about the awesome trade-off!  Now that I have made the transition from needles to an oral medication, my wish now is for a medication that is not temperature sensitive.  Then I could say how things would be as close to perfect as it could get for me, multiple sclerosis wise  ;)

The next thing on my medical to do list is changing my neurologist. I've had the same one since we signed up with Kaiser and I think it is time to make the change.  I feel I need someone who is a little more aggressive and dependable.

Tecfidera update

Things have been pretty busy and I've been unable to post some information I had been wanting to share, but better late than never. This post will be filled information from different days, so I will try and make it easy to follow.

As of 6/12/16:
3,330 days = 9yrs and 12 days. Final day of my daily 20-mg glatiramer acetate injection this morning!! Bittersweet goodbye to Copaxone & Glatopa, you served my medical needs so well. Crossing fingers my body tolerates the switch to Tecfidera, an oral multiple sclerosis medication.

6/14/2016 AM:
The initial 7-day 120-mg capsules arrive as promised. As you may notice, I had a small lack of protection with a disease modifying medication (I had been worried about having this all along).

I have to say the first week of Tecfidera was interesting. One of Tecfidera's common side affects is how it may cause flushing. Surprisingly, I did end up experiencing flushing, four hours after taking the initial AM dose of the medication. It was amazing how quickly the flushing hit me, as though I had been embarrassed which tends to cause my face to feel warm and my cheeks turn a little red. I was not sure how long I would feel this sensation, but it ended up lasting for an hour. I was told the flushing could occur for the first month or so while the body was getting use to the medication, but the experience differs for everyone. In the thoughts to minimize the flushing, we decided to purchase some 80-mg baby aspirin to take 30-min before (specialty pharmacy pharmacist advised on this option), but discontinued taking the aspirin after a couple days. Luckily, I experienced flushing just that one time, even when I started the higher 240-mg regular dose capsules the evening of 6/21/16.

7/5/16:
Past 7-10 days I had felt a tingling sensation - first felt on the right side of my lip and progressed to the right side of my tongue (feeling felt is similar to what one may feel after having dental work done and when that numbing medication is wearing off). The soles of my feet eventually felt the tingling as well. Other than the new addition of Tecfidera, everything else is the same. I had called Kaiser's Specialty Pharmacy in Daly City about my symptoms. They explained how they didn't have any reports and advised me to contact my neurologist. Unfortunately, my neurologist was on vacation for a week, which began 7/5.

7/6 PM:
Feet are not cold, but with the tingling/numb sensation they feel cold.

7/8:
More numb feeling. PM - while brushing teeth, mouth felt more numb.

7/29:
Brain MRI, with & without contrast agent (gadolinium); Results indicate an active lesion, but small, and explains my symptoms that have slowly gotten better over after all this time. I am hopeful my symptoms will be gone and things will go back to normal.

Update: Oral medication arriving early next week!

There was a minor setback in getting things ready with switching medication from the inject-able to the oral, BUT delivery is finally setup and the switch to an oral medication is really happening!

Next Tuesday (6/14), a FedEx truck will be making very important delivery to our home... yup, it's my new oral MS medicine, Tecfidera. I no longer need to wait in line at the pharmacy, every month, to get my MS medicine. Tecfidera will be a mail-order medicine shipped from Kaiser's Specialty Drug Pharmacy located in Daly City, CA.

For the first 7-days I will be taking the lower dose (120-mg) orally, twice a day. Then, if I am tolerating the lower dose I will take the regular dose (240-mg) orally, also twice a day. I will continue my followup with my neurologist on blood work and yearly MRIs to make sure everything is staying as it should be.

Dream come true?!

My last posting was about the change from Copaxone to Glatopa, was pretty seamless really.

~*Fast forwarding about six months*~ .. Big changes may be in the very near future (as in 13 days)~

My last neurology appointment (4/29/16) went well - my neurologist was pleased with how well I am doing and have done. We spoke about the possibility of switching to an oral medication, Tecfidera (teck-fi-DARE-ah), but I first needed to get some blood work done and new brain MRIs (w/ and w/o gadolinium, the contrast agent) to see if the change would be a safe and realistic option. After waiting two weeks for the results on all the blood tests and MRI's, they all ended up came back looking good. The doctor's comment on the brain MRI results was the best:

Good News, no new lesion and no enhancement in the lesion, indicate good response to treatment and remaining in remission.

How rad is that?! That definitely made my day!!! Ok...so, I will keep you posted on how the switch to new oral Rx goes...(I've only been hoping for this day since, well 9/2008!)

If anyone is curious to read more about Tecfidera, here are a couple links:
http://www.webmd.com/multiple-sclerosis/news/20130425/new-ms-drug-qa

http://www.nationalmssociety.org/Treating-MS/Medications/Tecfidera%E2%84%A2

2 month + Glatopa update

Since it has been awhile since I've transitioned to Glatopa (since late July 2015), I wanted to take a little time to post an update about my experience.

As I had expressed, I was a little leery in the switch from Copaxone to Glatopa, not only because I was so use to what I had grown to know, but the autoject to administer the medication was different and I was unfamiliar with how Glatopa's support network, GlatopaCare, would compare/holdup to Copaxone's support, Shared Solutions. Change can be difficult, but I had to just go for it and trust the professionals.

It's been a little over 2 months since I began taking Glatopa, and for myself things have been fine. Other than the Glatopa autoject being slightly different, everything else has been relatively smooth. I anticipate that had someone just swapped them w/o my knowledge, I wouldn't have known any difference. The injection sites are similar, but if I remember correctly, Copaxone had updated their site locations as well. I still have yet to utilize Glatopa support network, but I'm signed up should I need it.

Oh, and those who know me.... I am still waiting for Kaiser Permanente to put the the 3-times-a-week Copaxone on their formulary. Mail order for this prescription would be wonderful as well ;)

Glatopa's Glatopaject instructions

Images of Glatopaject instructions, aplogize for the low quality of the pictures.

Update: My transition to Glatopa

Well, I have been on Glatopa for 10 days now. I was a little leery, having only been on Copaxone since I was diagnosed; however, the transition has been seamless (alcohol pads were even provided in the kit, seeing as I had gotten use to none in Copaxone kits). Glatopa's autoject is a little different then the one I had been using for Copaxone, but I found it very easy to switch to. I was told the Glatopa autoject is not the same as Copaxone's, therefore only administer Glatopa with it's corresponding autoject. I have yet to utilize Glatopa support network, GlatopaCare, but have signed up and anticipate checking it out in the future.

It pleases me to know the blog I started (and still post to, occasionally) to not only serve as a personal journal and family/friend informative site has now helped a stranger.

I've switched to Copaxone's generic, Glatopa

You've read it correctly, for the first time since being on Copaxone, I have been switched to a different medication.

Glatopa (Sandoz, a Novartis company, developed in collaboration with Momenta Pharmaceuticals) is the first generic version of Copaxone that has been approved by the U.S.Food and Drug Administration (FDA). Copaxone and Glatopa contain the SAME active ingredient, glatiramer, in the SAME amount and work the SAME way in the body to help manage Multiple Sclerosis (MS). The Glatopa dose will be the same as the Copaxone dose, both 20 mg, is injected daily, in the fatty layer under your skin (subcutaneously). I will also be using a NEW auto-injector device for Glatopa as my Copaxone auto-injector is not compatible with Glatopa syringes.

I am finishing up the last remaining 2-syringe supply of my Copaxone, but I am sure it will be a seamless transition. However, I do think it will be pretty strange/bittersweet to no longer be working with Shared Solutions, who has been my support and network for MS from day one since being on Teva Pharmaceuticals' Copaxone.

Glatopa's GlatopaCare will be the new support network, and I just hope it's as good as SharedSolutions.

I still am still hopeful to eventually switch to the next-generation formulation of Copaxone 40mg, that works longer, and so requires fewer monthly doses. For this to option to happen, I'm waiting on Kaiser to put it on the formulary.

MRI (Brain) results

Well hello (if any one even follows this blog still)!!

Not much has been going, but I had a MRI completed yesterday, 3/8/2015. Quick and easy = no contrast agent (gadolinium) was administered. I think the funnest part about the MRI appointment was the interaction I had with the technologist conducting the scan. He asked if I've had an MRI before. I answered "oh, yes, this will be my 7th.....I have MS." His response, "oh, really, I would not have ever thought you had MS" was great to hear! I do get that surprised response from many people after they find out I have MS. Anyway, the results: My neurologist reviewed the MRI report and images, similar in appearance to prior exam in 2011, no significant change or new lesions.

Most of you know I have been administering a daily 20mg injectable therapy medication called Copaxone. Last year, the 3-times-a-week COPAXONE 40 mg was approved. I emailed my neurologist explaining how I was curious if the 40mg is on the formulary yet, and if so, it would be something I would now consider switching to (as long as he agreed). Dr informed me he called the Pharmacy to change to 40 mg dose. Well, turns out the 40 mg is not on the Kaiser formulary yet as it currently has a monthly copay of $1,200. No way... I will be sticking with the daily poke for a bit longer! Major ugh!

Other than that things are going a-okay!

Well, well.. I have to say I have been meaning to log-in to this site for quite some time to post something, but what?! :) Things are going well, no exacerbations/relapses, hence the lack of MS activity postings since late 2012. Life is going great, busy and it will get busier since summer is right around the corner.

On 5/20 Casey accompanied me to a local lunch MS Event I had registered for (and it was also his birthday). The topic was 'Intro to the 3-times a week Copaxone 40mg experience' where as I am still on the 7-times a week (daily) 20 mg Copaxone injections. Other than the event's informative topic, we also learned about some new tools such as the new phone app to record my injections (vs the paper book I receive yearly) and injection site updates. I also learned that I should have a new autoject every yr to yr & half. I was not aware of this at all, so I have been using the same autoject since 5/2007. I called and requested a new autoject and received not one, but two yesterday. I was told the reasoning for the new autoject is because the spring within the device can weaken; however, mine has been working just fine but it's always a good idea to have extras should something occur.

I will try to be better and add posting more frequently, but as I say, if there aren't any new postings, well hey, that is a good thing :) Have a great summer & remember to reapply yur sunscreen!

So, a friend of mine sent me an email last week letting me know she periodically checks my MS blog but noticed there hasn't been anything since June and asks if no news (as in nothing to blog about) good news? I hope so. Guess it has been a while since my last post - more than a year - that is unacceptable! :) Anyway... Nope, I haven't made any postings since not thing to report; however, for almost two weeks now I think I have been experiencing a exacerbation. My left leg feels a bit odd, not numb but just a strange sensation. I know if I go to the doctor he would offer me a prescription for steroids but I don't think that is necessary. Besides, if I can manage, I feel it is unnecessary to drug myself. I think if things were/got worse, it would be a different situation. Some people may disagree, and that is okay, but this is what I have decided to do. Other than that things are going just fine. Happy holidays to everyone!!

MRI results

Oops, I had forgotten to let you all know what the findings were. Results for my 11/15/11 MRI showed a few areas 'suspicious for active disease', which isn't anything different from my past findings. Other than that things are fine and nothing to be alarmed about.

Lastest MRI

I had not realized how long it has been since I last posted anything on here...

Not much has been going, but I had a MRI completed 11/15/11. My last one was 12/13/09 so I was due for another. When I first met with Dr. Ansari, my new Kaiser Permanaete neurologist, 9/18, he explained how he wanted to have a more current scan done this month to see if there are any changes, regarding lesion activity in my brain. I have to say, this was the best MRI experience yet. By easy I mean relatively quick and the injection to administer the contrast agent (gadolinium) for the second part of the MRI was not a problem at all!

So far, the people I have interacted with at Kaiser have been real nice. It helps my visits to my different appointments have not consisted of waiting hours in the waiting room prior to being seen, unlike the visits in MI. I am a fan of the way the Kaiser system has been since I became a member - really thought out and logically put together. I quote myself when I say 'Kaiser work like I think' - why make things complicated when it is not necessary.

As far as my MRI, I have not heard back on the results yet. I don't think the wait should be too long until I find out.

Visual Guide to Multiple Sclerosis

I received an email from WebMD on multiple sclerosis. One of the topics/links in the issue contained a link to a visual guide to MS. I think it is very helpful and maybe you will too. Please, check it out: http://www.webmd.com/multiple-sclerosis/slideshow-multiple-sclerosis-overview?ecd=wnl_mls_012111

What, contaminated prep pads?

Five days ago, I received an email regarding a recall notice pertaining to the brand of alcohol prep-pads, Triad, that come within my Copaxone packaging kits. The recall is voluntary but it was saying how the manufacturers of these alcohol pads have issued this voluntary recall due to potential microbial contamination. Umm... voluntary... what?! No - all of my prep pads were immediately tossed upon reading that email. Using the benefit of Casey being a doctor, he picked a small stack of replacement prep pads up at the hospital for me. They're a different brand, of course. Things are back to normal now, but what a horrible thing.

Wow ~ 1/1/11

Had my 6-month follow-up appointment this morning. Everything went well and my doctor, Dr. Alka Sha, said she is very happy with how things have been and are going. So, again, same ol' same ol'.... nothing much to report on.

May 3rd will be my last visit with Dr. Shah before Casey and I move back to the West Coast (yay). Then the work begins to find a new neurologist with Kaiser in CA. After we move, Dr. Shah said she would continue to prescribe my Rx until I find another neurologist. Sound familiar? My neurologist in NY, Dr. Nabil Aziz did for me when we moved from NY. Moving moving!! Anyway, I asked Dr. Shah if she wouldn't mind giving a recommendation for a neurologist once we know more on where we will be moving to. I will have to get back to her with more information once we know more on our end.

Keep on keeping up :)

It has been quite some time since I've posted anything...what, 4 months now? There just has not been much going on in the MS front *yay*. Besides, my last visit with the neurologist was early July and the next appointment is not until January '11. I have graduated from going every 3 months to every 6 months! Wow, just in time - we move and I start over again with another doctor. *sarcastic laugh* Well, since there isn't much to report on I might as well share some miscellaneous happenings going on with us....

Monday, 9/27/10, Casey and I will be flying into Las Vegas for the American College of Emergency Physicians (ACEP) convention. We arrive around 7pm and will be there until the early afternoon Friday, 10/1. It will be a great opportunity to do some networking and hopefully acquire additional places to interview. It isn't like the nine-months-until-we-move deadline is all that far away. (wow - really... moving again?!) Oh, and of course we are not going to be all work and no play... we're also are viewing this chance for a mini vacation to have a bit of fun. Why not - after all, it is Vegas!

Casey has an interview for 11/9 lined up at Kaiser Permanente located in Walnut Creek. He is waiting for the time off to be approved before we can book his flight. It is our number one choice so it's pretty exciting. Please luck, be on our side.

Our first wedding anniversary is coming up (9/26), right before we leave for Vegas. In a way it's perfect timing because Casey is working on our anniversary (but has the prior day off) so we figured why not celebrate Vegas style. The trip is sandwiched between our wedding anniversary and the 'since we have been together' date, which is 10/3 and marks 13 year. CrAzY cOoL!

Anyway, Happy *early* First Day of Autumn (9/23)!

Multiple Sclerosis: Advances in Research and Treatment

One of the more common questions people as is 'how did you get MS?" I always explain that currently, there are a few factors (i.e. environmental, genetic, viruses) that may be the cause; however, no one really knows the answer... yet. **To read on 'What Causes MS' click: http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-causes**

Anyway, the purpose for this posting is to give awareness to an article posted on WebMD about some additional research finding some "genetic underpinnings." The article also discusses a few other topics such as repairing damage (remyelination) and new drug treatments of which some do not involve needles; however, as I posted in my 12/8/09 post, the new drug(s) are not ideal for my situation. Besides, my neurologist is happy with how my current medication is working for me. Hopefully there will be a day I will be without needles, the accompanying sharps container AND get some remyelination. :)

Check out the article (the URL is listed in the sources below) it is very informative.


Sources:

• http://www.webmd.com/multiple-sclerosis/features/advances-ms-research-treatment?ecd=wnl_mls_052110