Medication – Page 3 – Multiple Sclerosis & Me

New Site

I’m here on a new site. New site, new look but we limin the same old way.

Thanks to M, my prior posts were migrated (in fact, thank you Michael for helping me launch this new site!) so to pick up where I left off, the 2nd round of Lemtrada went off without a hitch, so to speak. there were no problems with the administration of the drug, no side effects (short or long term (thus far)), no problems…until I went back to work and got the news that my short term disability claim was denied -they said that they didn’t have enough proof to substantiate my being out (guess I should have taken my laptop in for some juice from the IV too). Allyuh eh serious – steups!!!

When it was all said and done though, I was able to use sick time (I hardly ever call in sick) to get paid so everything worked out.

Back to the new site. Even tho the old posts were migrated, the links to my Trini dictionary are broken so don’t be alarmed if u’re trolling thru old posts and u aren’t able to get there. Good news is that the dictionary is here so you can still get the definition if you’re totally confused. Also, looks like some of the fonts are skewed but doh hold it against me – those posts were on a different platform.

This is going to be a short post – just wanted you to know I’m back up and running so we’ll resume shortly.

Lemtrada – Next Rounds

this is going to be a short post.

Just wanted to let allyuh know that Lemtrada Round 2 is next week Wednesday. I got lucky. when I found out that it was going to be in October, I made sure that it could be scheduled after Columbus Day so I wouldn’t miss Miami carnival again because of it. turns out that was a non-issue though cuz I’m not even going. anyway…

it’s 3 days this time so I’ll go in next week Wednesday – Friday. remember, each day starts with an hour long steroid infusion and I truly believe the 5 days last year is what made me sick afterwards. I’m hopeful that this time with only 3 days, I’ll be okay. I’ve had 3 days of steroids before without issue, so why should this time be any different? right??? time will surely tell…Also, u know that my hero days are over, so I’m on leave again…actually don’t go back to work till the 24th.

so. I may be missing in action for the next couple weeks…if I am, you know why.

Lemtrada – The Drug

It’s prolly the strongest drug out there…it’s also the most expensive one I’ve taken. When I opened the “cost” statement, I swear I almost fell off Soca Scooter – the length of time for approval suddenly made sense. The simplest way to explain how it works is to say it depletes the Tcells in the immune system. The thought is that when the immune system regenerates, it’ll be with “good” cells that will not attack the body and in turn cause nerve damage (it’s actually a drug that’s been on the market for a while but was repurposed to treat MS). So for a while after treatment, I was sure to protect myself best I could from getting sick/catching anything cuz there was no telling if/how/how long i’d take to fight it off (so jes in case, I didn’t go Miami carnival last year) and my doc had me on anti-viral drugs till January.

Of course, like all the drugs out there, it comes hand in hand with its laundry list of side effects. I won’t bore u with them but I will tell u that a nurse comes to my apartment monthly to collect 4 (sometimes 5) vials of blood and a cup of urine – this will continue for 4 years. Oh. I will mention that Lemtrada may cause an overactive OR under active thyroid. For the life of me, I can’t rationalize how it could cause ONE or THE OTHER…shouldn’t it only cause one???

Not trying to put goat mout(h) on mehself, but with my luck if I were to develop one, it would be under active and I’ll gain weight

On the last day of treatment I called my manager to let her know that all was well and she commented that I sounded better than I had in the previous few months. Interestingly, 4 other people said the same thing to me and looking back I realised that it had actually been a stressful few months leading up to the treatment.

I got a call from Robyn at the MSCA bout 2 months ago and she said that lab work showed that even tho my numbers were increasing, they weren’t increasing fast enuf so they wanted me back on the antiviral drugs. “GREAT!” She assured me that I didn’t have to be concerned; it was just a precaution.

Good news though – I had a physical done 2 weeks ago and my blood count is now back to normal…till Octoberish (when I go back in for round 2) – “happy happy” times.

The Lemtrada Process

Last week was a rough week work wise…gihmeh ah bligh for not posting.

Since my diagnosis 11 years ago, I’ve actually been on 5 disease modifying drugs and there was always one reason or other for changing. Last year in February my doctor suggested that I’d be a good candidate for a new one that actually had years of trials backing it. We discussed it; I said sure. I’ll post next about how Lemtrada works but for now, I’m just going to talk thru the process of getting it. I took my last gilenya pill at the end of February cuz he figured (he wasn’t completely sure at the time) that I’d need about a month drug free so I could start Lemtrada in April. It is an intravenously administered drug that is done over a period of 5 days. I gave my manager a heads up because I was thinking that I’d need to take leave cuz who knew how I’d react. I was ready…HAH!

Well…I had to be approved – so the insurance company had to be contacted and they would provide approval. Alright…couldn’t do anything but wait…every 2 weeks or so I’d get a call from my doctor’s office to report “nope. No approval yet” and then in July the call update was”okay, we are a go” By then I was in another position (I’d actually transitioned in May (and not by choice)) and the entire situation forced me to have the “MS Conversation” much sooner than I’d wanted. Luckily though, my new manager was understanding even with/in spite of all the uncertainty. Honestly, I don’t know whether or not anything was different (symptom/disease wise) for all those months, but I was ready to be on something again. I had to do preliminary blood work and I’d be on my way. Of course nothing is ever easy in my world. The results showed that I’d never had chickenpox and having chickenpox antibodies is a MUST before going forward. Ok. No problem…that y there’s a vaccine right? Right…but…after being vaccinated, the antibodies aren’t generated for 6 weeks so yeah, u guessed it – I had to wait another 6 weeks to begin the process. Did I mention that 2 of my aunts were coming from out of the country to be with me. It’s expensive enough buying a normel international ticket – leh we not get into when u hadda buy it last minute cuz we jes weren’t sure when this thing was actually going to happen. Finally, on Sept 14, I went in for my first infusion.

That first week consisted of me and Rhoms going into the MSCA by 6:30/7 am at which time I was hooked up and given IV steroids for an hour. When that was done the Lemtrada was hooked up at that took a loooooooong 4 hours to completely drain. After that, I was observed for an additional 2 hours. It was a complete work day.

As a side note: the MSCA nurses’ process included inserting a new IV line daily – until they met me…heeheehee. After trying 3?(or 4) times that first day, they decided that maybe my line should stay in so that they wouldn’t have to fight (and put me through that) everyday.

The week actually went smoothly with no drama – it was just very long – but lemme tell you, boy was I happy that I’m no longer a hero and had the good sense to take an additional week off. I’ve had 3 days of IV steroids before and I’d never had any bad after effects but I guess 5 days was too much for my poor, lil body. Things started going downhill from Saturday evening and I didn’t feel like a normal human being again until Wednesday. I was sick, I was weak, I threw up a couple times…was an awful 4 days. I will be forever grateful to Rhoms and Aunty B for being here with me.

Good news/bad news…

The good news is that I only had to experience that once
The bad news is that my second dose of Lemtrada is coming up; most probably in October (this time tho it’s only 3 days…i’ll still take 2 weeks leave tho)

More good news…once I get my second dose – that’ll be it. Stay tuned for how it works…

Stax

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