Week 18 - End of Week Adendum

Week 18 - Post Lemtrada

February 23, 2020

I wanted to do a short post just to wrap-up week 18.  I guess if you are counting months in 4-week increments, I am 4 1/2 months post Lemtrada. 😊

Primarily, I just wanted to update about the conversation I had with one of my neurologists.  He called me on Friday to talk about the steroids vs Rituxan.  They work in different ways to hopefully prevent the same thing.  The Rituxan targets B-cells, lowering the number of them to help eliminate possible secondary autoimmune issues caused by the B/T-cell difference.  Steroids reduce the inflammation caused by the B/T-cell difference which helps to eliminate the possible secondary autoimmune issues.  The steroids won't lower my B-cell count.  He told me that their preferred way is the Rituxan but have had good results using steroids instead where they need to.  I am glad he called because now I understand better but it is still frustrating that it's my insurance company and not my doctor who is making this call.

I was a little down and teary on Friday morning for no apparent reason.  After the Doctor called, I started to get angry all over again about the insurance company.  It dawned on me that my emotions have been "volatile" this week. 😬 I wasn't really paying attention to that possible effect.  In October, I had gotten angry one day but overall I was ok and I had a whole lot of steroids.  The only other time I had IV steroids, I didn't notice any emotional effect.  I just wasn't thinking about or anticipating it even though it's a very common side effect.  The other thing I realized is that I should start feeling better.  All of the various symptoms that I've been having should be getting better.  As I mentioned in my last post, I've noticed some improvement but nothing too significant.

That's it.  Have a good week.

Weeks 16-17.5 - No Rituxan for now

Weeks 16 & 17-1/2 - Post Lemtrada

February 20, 2020

It's been over two weeks since I posted last, sorry about that.  It's been a busy month.  Two sets of visitors visiting us and my family went out of town for the long Presidents weekend.  We drove but it's the first time I've traveled anywhere since my Lemtrada.  It was good to get away even if it was only for four days.

I haven't gotten back in the habit of writing notes to myself each day so I've been trying to think back to how I've been feeling over the last couple weeks.  Like I mentioned before, the good thing about being busy is that it gets you out of your head and your concentration off how you are feeling.  My legs are still a little 'bouncy' and really more like a little unsteady first thing in the morning; I feel like that has gotten more mild and leveled off at a mild level.  My fingertip numbness is also maybe a little better but not much.  My energy level seems to have leveled off and I was wondering if the DHEA is helping then I remembered I had a 1,000 mg infusion of Solu-Medrol (steroids) last week so that's probably the answer there.  I had a little bit of trouble falling asleep the first two nights after the infusion but I was fine after that.  I haven't had the super good mood spike like I did after 5 days of Solu-Medrol with my Lemtrada but I haven't had any bouts of exhaustion this week either.  I think the DHEA might be helping too; I did notice a little bit more stamina even before I had the infusion.  My mental clarity has improved a little bit but for the most part I feel like I am floating from task to task or bumping into the next thing I need to do.  I really don't feel "all there" most of the time.

The issue of mental clarity has been bothering me.  I had a yoga teacher training session scheduled for March, it is an intense all day for 11 days schedule and I was worried about how my lack of concentration was going to interfere.  I was trying to get a start on reading one of the books while we were out of town and was having a hard time with that.  Unfortunately but also fortunately, it was rescheduled for the end of September.  Hopefully, all my brain cells are back to working together by then.

I got a call from one of my Neurology doctors on Friday last week asking if I had done the steroid infusion; I had just done it on Tuesday.  He said that it appeared it was going to be difficult to get the insurance to approve the Rituxan so they felt the steroids would be enough and they also didn't want to take my immune system down too low by doing the Rituxan on top of it.  I said 'ok' and let him know that I was due for my monthly labs next week (this week).  I did my blood draw on Tuesday and got the rest of the results today.  Everything that should be in range, is in range.  On my Lymphocyte  subset where they look at my T & B-cells separately, there was a note that since I started with the steroids, my doctor felt that I should keep that protocol (instead of Rituxan) as mitigation for possible secondary autoimmune issues and may need to redo the steroid infusion in 2-3 months depending on my labs.  I am completely confused because my B-cells did not go down; they actually went up a little.  Maybe it takes a little time but the nurse at the infusion center told me that my immune system would be lowered for the following 48 hours and my blood draw was a week after my infusion.  I did send a note to the doctor asking about that. 

I will wait to see what the doctor says first before I go full roid rage on the insurance company but I am already right there.  If I develop a secondary autoimmune disease, I am fully prepared to sue my insurance company, the person at the insurance company who reviewed my case and the drug manufacturer who makes Lemtrada.  The insurance company for not listening to my doctor and putting my life at risk and the drug manufacturer for not releasing all the clinical data which shows a link between secondary autoimmune issues and the T&B-cell differential.  I think my immense displeasure of this situation is pretty clear.

On a happier note, I have been getting out more and getting back to regular life.  I went to my son's HS musical and my daughter's orchestra performance.  I am still nervous about being out too much but it makes me feel better at the same time that I am not missing out.

I think I hit all the major events of the last two weeks and this is a long enough post already; I will wrap it up here.

Neurology follow-up

February 3, 2020

Did anyone notice the date was 02/02/2020 yesterday? Date palindrome? 🤷 I think if I wasn't married already, I would have picked that date. No one can use the excuse they forgot with a date like that.

Enough about that...I saw my actual neurologist for the first time, post-Lemtrada.  He's a talker and I had a bladder ultrasound; we were there for a total of 4.5 hours.  It's a time commitment to be his patient but he's a great doctor and I don't have to see him every time so that helps too.  Not a whole lot to update about, really.  The gist is that I am right where I should be; nothing is out of the ordinary.  I did express that I was a little disappointed that I haven't seen any improvement and actually feel worse but at the same time I was telling myself that it's still early.  Of course they agreed with the "it's still early sentiment" and said many people don't start to see improvement until the 6 month point and others don't see improvement until the second dose.  So I am not out of the ordinary; he also said that it is possible that the divergence of my T & B-cells could be part of what's making me feel bad.  They are still planning to have me do the Rituxan; he was pretty confident that he could get it approved after the peer review and phone call.  The other option is to do a dose of steroids.  The steroids don't target the B-cells as directly but helps to get them more in line.  We decided that I would do a dose of steroids in the near term because I would need them either way and then hope that the week after I can do the Rituxan.

The bladder ultrasound was to see if I am fully emptying my bladder.  They measure the size of your bladder then you go to the bathroom and they measure again.  It should be close to 0, mine was not.  So now I am going to a gynecologist who specializes in urology issues to make sure it's a MS thing and not a physical thing. More fun to look forward to. 😣

That was basically it; of course they did all the strength and sensory tests and I didn't have any changes there.  It's always a little shocking when they do the tuning fork test and on my foot it feels like it's stopped but then they put it on my hand and it's still vibrating.  Also, the neurology fellow checked my eyes and made a comment (to the medical student in the room) about the nerve in my right eye showing damage from the optic neuropathy I had.  That was way back in 2005 and no one has ever mentioned they could see it.  That took me by surprise but he also said it wasn't new/hadn't changed.

My mom is coming to visit this week; I am excited about that.  I have my Solumedrol infusion already scheduled for next week after she heads home. Should be a good week. 😊