Another Step Away from My Gilenya

Well, I am now definitely saying goodbye to my Gilenya and hello to Mayzent, which is supposedly the safer version of the same drug. It lets ones immune system bounce back if needed, and in these Dark Times one needs a good immune system.

I looked at the patient-targeted literature for this new drug, and if I recall it said something like, “this is good if you have relapsing-remitting MS” (me me!) “or if you have had a reduction in lesions” (also me ... uh-oh ... ) ‘or if you have secondary progressive MS.” (not me, I guess ... yet?) It was just a disturbing confirmation that I seem to be trudging on to the More Serious MS even though I thought the progression was stopped in its tracks. I stopped any new lesions, but evidently at my age there’s a turn, the lesions disappear, and take a little bit of brain with them. Still, you can’t deny I have fewer lesions than I might have had, so less worry about vital brain parts vanishing.

Also, the best predictor of the future is the past, and I have had a comically easy course of relapsing MS. I anticipate an equally easy coast down this new road.

Barf. Anyway, enough heroism. I just can’t stand all this positivity. Let’s get on with the bitching.

To continue my crawl toward this new drug, I needed to check off a vaccination checkbox, so today I got my first dose of the Shingrix shingles vaccine.

First off, I had to find a place to get it. Doctors’ office? No, just telemedicine. Walgreens? No, CDC says it’s not essential. I ended up getting it at Target, where there was a little CVS counter. Target. I felt like I was in a dream. “And then suddenly I was getting a vaccination but it was at Target and the pharmacist was a sheep in black underwear.”

”Oh, you should know,” the pharmacist said, after he gave me the shot, “your arm will hurt.” That was four hours ago, and I just raised my arm to scratch my head and almost fell down. I laughed uncontrollably, that’s how much it hurt, and the last time I laughed at pain was when the physical therapist tore apart my frozen shoulder. 

This how much it hurts: the side effects section for the vaccine reassures you that Shingles hurt more. “Not as bad as SHINGLES” it chirps.

“How long does this last?” I wondered. I googled. DAYS. Two DAYS. I may be distracted by the chills and fever and vomiting, though. (I swear, I just typed ‘fever’ and I started feeling hot.) I will get the same side effects after — get this — shot number two, which is scheduled for July. 

Of course, I am being a baby. It only hurts if I try to use my arm, for anything like, say, touching my face, which I don’t do, or painting, which I should do. I put off last Saturday’s painting because of the basement puddle, so next Thursday’s paint update will be thin.

I know, risk vs reward, permanent disability vs two days of arm pain, but damn. 

Comments

[KC]

We... do not really like... risk/reward tradeoffs that are painful. Harrumph.

I hope Mayzent treats you really well! :-)

[Donna]

If it helps to know, I found the second dose of Shingrix to be significantly easier than the first.

[TheQueen]

KC - I have found that Tylenol cuts the pain in half. Plus, I’m 57, I can take it. I’d hate to be 90 and have to put up with this.
Donna (hi, Donna!) - that does make me feel better; thank you for sharing!

[Allison]

Ugh. And Ugh. And Ugh but also a little bit haha. You are very good at transforming misery into laughter. I hope this is the worst you have to endure on this journey.

[Arlene]

I got my first dose of the Shingrix vaccine in February--don't remember my arm hurting much. Wonder why yours was so painful. I still haven't gotten the second shot. My doc says that can wait up to 6 months for 2nd shot--at least 6 months is as far out as has been tested. Hopefully, I will feel safe going back to CVS by that time.

The thing that irritates me is that, as of this year, all the Medicare-D insurance plans (Medicare supplement for drugs) are now able to add a deductible for certain drugs. This new policy means I have to pay for both shots ($177 X 2) out of pocket. That effectively doubles the cost of my drug policy. Mostly I am bothered by tRump touting the fact early this year that he wouldn't allow Medicare-D to increase in price. True if you don't use it,

[TheQueen]

Allison - I hope so too!
Arlene - yikes! That’s absurd . I’d better check my plan - I already met my deductible. That’ll be annoying if more gets tacked on.

[KC]

If you didn't end up with the vomiting, etc., then yes, a dose of pain that can be substantially diminished by Tylenol isn't... well it isn't *that* bad, anyway?

(also highly in agreement with Allison as to your conjuring powers of turning misery into laughter. :-) )

[TheQueen]

KC - it was gone after a day and a half. Not bad at all - I just wasn’t prepared for it , somehow, even though I had been warned.