SPINRAZA THIS WEEK

This was one of those busy weeks. In preparation for taking Spinraza, I had to rearrange my medications. No blood thinner when I’m getting punctured in the spine. Even though I have been through this several times, I always feel a small amount of stress. Things CAN go wrong even in the best of settings. For the most part, though, I was fairly confident that things would get done quickly. Granted, I don’t really enjoy being NPO for after midnight, but it really isn’t a huge problem. I Have certainly faced worse.

The trip down was uneventful. Traffic seemed fairly light. I can’t tell if it was really due to coronavirus or whether it was just a good traffic day. Downtown seemed kind of sad, although I guess it was more the medical center itself then downtown. We some more of that on the way home. It just seemed like fewer people were around, of course they all were masked. They also seemed a little bit sadder, if you could tell by their posture while walking around the campuses of all those hospitals.

We probably got there about 15 minutes before I thought we would. I always budget extra time for finding the parking lot, it’s usually horrible. I may not have needed to, but I don’t know. The parking lot was not empty, but it was not difficult to find a parking place. There were fewer people around waiting to use the elevators that led to the place where you could walk across the sky walk. We answered some questions about whether we thought we had Covid, they took our temperatures, and sent us on our way.

We made it to the waiting room in record time, this time we didn’t turn the wrong way. There were about one third as many chairs available for patients as usual and everyone was being correctly distant. And then we waited and waited some more. We got back to the pre-procedure area and I got my hospital gown on. Then we waited for a bedpan so they could sample the urine to make sure the Spinraza wasn’t affecting my kidneys. Then we waited for them to access my port so they can do blood work. Then we waited for all the lab work to come back.

The nurses and the doctor came to discuss with me about the procedure – making sure I knew what I was getting into. I pretty much described to them what they were going to do and how long it was going to take. Then we waited, I’m not sure what we were waiting for this time but it was part of the procedure.

I went to the CAT scan room and they positioned me. They tried to comfort me but I really didn’t think that was necessary, I have mastered lying still. The doctor came in, I was mildly sedated (very mildly, by my own request), and they figured out how the needle was going to work around all my spinal instrumentation. (I have to admit, I think CAT scans are a nifty tool, and I like seeing the pictures afterwords.) When they inserted the needle, I was a little uncomfortable in my thigh this time. It is SO weird what happens when they brush against a nerve! Anyhow, the procedure itself took about three minutes, but I was back in that room for about 15 or so minutes?

I got back to the room and got dressed. Oh yeah, they introduced me to the PureWick device. I couldn’t use it then, I’ve been without any liquid since midnight the night before. I drank an instant breakfast so I at least have SOME nutrition in my system. Then I had to wait for them to de-access my port and get papers to go home.

This is the longest amount of time it ever took to do a Spinraza’s dosing. We got into the parking garage at maybe 11:10 AM. We did not leave the parking garage until 4:50 PM. Then we got to face Houston Medical Center and downtown area traffic. Such FUN! After nearly running down some suicidal bicyclists who almost deliberately ran in front of the car, we got to the HOV lanes. It was not incredibly bad, except that just as we came to it, FM 1488 had an accident that really messed up traffic. We found another way home and I ate pizza for dinner.

 

Spinraza III

Landscape with Tree and Grass at Sunset
Landscape with Tree and Grass at Sunset-Photo on Visual Hunt

 

My Spinraza Loading Dose III is in the rearview mirror. Yes, it went well, again. While I don’t think I will ever consider a lumbar puncture to be ROUTINE, it was pretty much a routine procedure.
So far, I haven’t had any ill effects. Although today, my lower back feels “tired,” and my right leg feels like it woke up from being numb.

It isn’t pain, and I can live with that!

The progression of Spinal Muscular Atrophy is stopped, or at least slowed. (That seems to be what the literature shows, anyhow.) On Thursday morning, I was able to open and close my left hand. I haven’t been able to do that in… I don’t know how long. While I haven’t mastered that superpower in my right hand, my index finger can grip a little bit.

Saturday evening and today, I’m not quite as strong with either of those. But they are still better than they used to be.

Where do I go from here? My final loading dose is towards the end of the month. I will continue to rejoice in the life I have and any small gains that this medicine has brought me.


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Spinraza II

First Loading Dose Is in the Rearview Mirror

Spinraza Treatments: LET THE FUN BEGIN

Still Fighting a Cold

Spinraza II

The second loading dose of Spinraza is in the rearview mirror and the third dose is in front of me.

It went smoothly again. I don’t know that I will ever think of transforaminal lumbar punctures as ROUTINE, but I might be able to get comfortable with them. It’s a good thing… Spinraza isn’t a magic bullet. It’s not “one and done.” It’s a little bit more like insulin is to the diabetic.

I can live with that!

I do think I am seeing benefits. Granted, I’m not benchpressing anything yet. I have not been climbing ladders or stairs.

Things are much more subtle. I had WAY more than 50 years of muscle disintegration. It’s a bit much to expect instant superhero.

My breathing is better. I think my thumbs have fractionally more strength. It’s possible that my digestive tract is becoming more manageable.

All wins, in my book!

First Loading Dose Is in the Rearview Mirror

image of a CAT scan machine
This Helped Things Go Smoothly-a CAT Scan (image thanks to daveynin from United States [CC BY 2.0 (https://creativecommons.org/licenses/by/2.0)])
Yes… Earlier this week I had my first step in my adventures with Spinraza.

Other than getting lost and accidentally taking a tour of Methodist Hospital and the associated parking towers, it really wasn’t a bad experience.

Of course, there was some of the “hurry up and wait” that always happens with medical procedures. Of course, I was nervous… THEY WERE STICKING A NEEDLE IN MY SPINE, TAKING SPINAL FLUID OUT AND REPLACING IT WITH OTHER STUFF!

Just the idea makes the hair want to fall out!

I got changed into that fashionable hospital gown, gave necessary samples to make sure I’m okay, and equipment installed in case they needed to give me an IV med, and headed to the procedure room.

I was laying on my side and was strapped down. (Perhaps they expected me to leap around the room once they finished?)

They quickly located the spot and inserted the needle. It wasn’t COMFORTABLE, but it didn’t hurt… Except for when one of my nerve endings got touched. THAT caught my attention, but it was only for a split second.

The whole thing probably took 15 minutes. No headache, no pain… Tiny bruise that is very hard to find.

Since then, I have been dreaming all surfaces under my skin were vibrating as things slowly reawakens. Good dream!

I’m not really sure when to expect any possible changes, or exactly what to expect.

Next dose is in about two weeks…


Related Posts

Spinraza Treatments: LET THE FUN BEGIN

Still Fighting a Cold

Spinraza Treatments: LET THE FUN BEGIN

There is a treatment for Spinal Muscular Atrophy, the neuromuscular disease that I have. There are also several others coming down the pike, but… To the best of my knowledge, only one is currently deemed fit for public consumption. It is called Spinraza.

BioGen’s Spinraza information

FDA approves first drug for spinal muscular atrophy

SMA Foundation DRUGS IN DEVELOPMENT

ANYHOW… Next week I will begin treatment with Spinraza. It seems to work REALLY well with infants and young children, less well as we age. Also, this is not a “one and done” treatment. I don’t get to swallow a magic bullet and began leaping around the room. This is more like insolent for a diabetic.

I will get two doses in April and and two more doses in May. After that, quarterly. For life. (Unless I tell them to stick it someplace else…)

picture of a needle going into the lumbar region of the spine
LUMBAR PUNCTURE Photo credit: iem-student.org On Visual Hunt CC BY-NC-SA

Did I mention that they will withdraw some spinal fluid and replace it with medicine? I was actually going to do this last year, but… With my spinal fusion, it was difficult. They are going to do it with a CAT scan from a really weird angle.

Here is what some others with spinal fusions has said about the process:

My First Spinraza Injection Was Like Something Out of a Comic Book
(Absolutely not! They are not going to go through the side of my neck. If something goes wrong going into the lumbar region, it will mean the end of my track and field career. If something goes wrong and they inject that into my neck, no breathing or computer use.)

My Spinraza Journey

I admit, I’m a little bit nervous about the whole thing.

What Are Some Side Effects?

Here Is the List from WebMD

Yeah… It’s enough to make your hair fall out if you worry about it too much. I already have a good many of these symptoms anyhow. Nothing new under the sun…

 

Still Fighting a Cold

An Embroidery Illustration of What Lungs Look Like
An Embroidery Illustration of What Lungs Look Like

I have had a hideous cold since January 3. I probably should have gone to the doctor, but I am as stubborn as all get out. I’ve been taking it easy and drinking water. It still sounds like I have inhaled an aquarium!

Yesterday, though, I had a doctor’s appointment to change my tracheostomy tube. After he did that, Dr. C listened to my lungs and prescribed a broad spectrum antibiotic. I took the first dose (one dose daily for five days) and today was the first day I woke up without needing suctioning.

Maybe I have turned a corner!

This really has put a cramp on all my writing goals. My energy level and attention span have been quite low.

Again, today, that has improved. I have logged about 500 words today. That doesn’t help with the 14 days that I didn’t do much, though. Still, I still have time to catch up with my goal of writing 100,000 words this year. That’s almost 8500 per month. It is almost doable.

I also got some more interesting news! In August, it turned out that I couldn’t take Spinraza because they couldn’t get through my spinal fusion. Here is the latest info:

the latest on Spinraza for me
The latest on Spinraza for me