Lemtrada Progress

I tend to feel badly/kinda dislike (dislike is harsh wording) when I’m asked how the “new” medication is working. The reason is that I really don’t know exactly how to answer that question and I really do feel badly fumbling thru whatever answer I give. MS medication is not like ur typical Tylenol Cold, Aleve or any other OTC medication you buy – u buy them and within a couple hours, your pain/sneezes/coughs etc (should) go away. All the MS medications promise to slow down the progression of the disease and then there are one or two that claim that some disability may be reversed. So is it working? I don’t really know…I definitely hope so…I certainly can make an assumption that it is and I go with that. One thing that I can say with certainty is that I have no additional MS symptoms and no new worries…I still only have walking issues, weakness on the left side of my body and my left hand closes up.  If that is a measure of whether or not it’s working then “yup! It sure is working”. I don’t think that that is a stretch, so I usually go with that.

its weird. I’m “with myself” and see myself everyday – indulge me. Most times, I think that my disability is slowly but surely getting worse. I have good days and not so good ones – funny, the good are almost always on a weekend. On those not so good days, my movements seem much more laborious and in my mind, I move a lil slower. Well, within the past month or so, I’ve seen a number of people who are not in contact with me all that often and quite a few have remarked that “u moving very good” or “u walking better than when I last saw u” or “u moving rhell fast” and “u appear stronger than last time”. At first, I was a lil sceptical (wondering if that person really knew what they were talking about), but the more people who say it, the more I’ve started thinking that maybe I’m the crazy one. Don’t get me wrong, I still have some “not so good” days, but maybe overall I am looking better and so is the medication working? Maybe it is.

Lemtrada has a laundry list of side effects(of course) and I am constantly being monitored so that at the first detection of any of them, steps will be taken to combat (I finally finished the dose of antiviral drugs I was prescribed after the 2nd dose so I think it’s safe to assume that my immune system has completely regenerated). I do a skin check regularly so that I can report any abnormalities as soon as I notice anything. Every month, a chick comes to collect a urine sample and 4/5 vials of blood that are tested to make sure there are no changes with either. Every 3 months, she takes an extra vial so that my thyroid functions can be tested because it can cause overactive or underactive thyroid (this is just so comical to me because it just seems counterintuitive – I feel like if it must cause thyroid problems, it should jes choose one and run with it).

I will be remiss, if I don’t mention here that my veins always cooperate with her…they muhbe get tired of playing hide and seek all the damn time – no need for celebration every time she comes over and she’s usually done in a few minutes or so.

I have no more doses to take – there are only 2, so at this point, it’s just to wait and see what happens. The last time I went to the MSCA, my doctor talked about sending me for an MRI in a few months, so at that point I guess I’ll have a clinical answer to “are the meds working?” If I have no new lesions on the brain or spine, then I’ll definitely be able to say, “yes, it is!”…I think 🙂

MS in the News and Some Ole Talk

So last week the FDA approved a drug that is the first of its kind.  In addition to showing promise in terms of disease progression for sufferers of the relapsing remitting strain of MS (RRMS: relapse when “shit goes crazy” for a while and then things settle down and u go back to normal), promising results were also observed in patients suffering from the primary progressive form (PPMS: things just get progressively worse over time and there’s no “back to normal” period). This is GREAT news for PPMS folk because until now, their options were nil as far as MS specific drugs.  It appears that it will be administered via infusion and supposedly, it’ll be a relatively “safe” drug wrt its side effects.  The drug works by targeting specific cells of the immune system that are thought to be those that damage the myelin sheath and wreak havoc (the “problem” cells if you will).  The medical research field has made progress in leaps and bounds in the past 12 years with respect to available drugs – this is good to see and may be promising for a cure?(a gal can dream).  I remember wanting to say, “lady u mad?” when she told me I had to choose from injecting myself 1,3 or 7 times a week.

Read more in this article

I’ll bet my last dollar that many people have been waiting (patiently or not) for this day so it really is exciting news.

A couple days ago, it occurred to me that I didn’t share one of the most important things about the new scooter, that from now on will be referred to as Bumblebee – of course…how did I take this long to think of that? (it really is a lil transformer…most people can’t believe how he folds up). Anyhoo, it’s actually a most embarrassing feature. When I reverse, he makes the loud (very loud) beeping noise. One day I was in a bank, a quiet bank, with about 7 customers in line – everyone was focused on what they needed to accomplish; u could hear a pin drop – and I was done with my teller transaction and couldn’t just drive away.  “GREAT!” I had to back up…BEEP! BEEP!! BEEP!!! smh..it’s bordering on obnoxious. 
ugh! but I love Bumblebee still 🙂

i also thought I’d share that I originally stopped blogging (on Blogspot) at the end of 2014 because my physical disability was in a downward spiral and it became more depressing to write than not (looking back, I realise that I’d probably been in a lil funk too).  As I came to grips with my worsened state, the writing bug bit me and I really wanted to write again, so I started back last year June.  I stopped again in October last year but that wasn’t my decision – I was forced to stop.

Remember I have issues with my left hand too, so I always use an iPad app to type the majority of the posts and then clean up, add links etc on my laptop before I publish.

Well last year, the Blogspot app I was using kept crashing so I had to make some changes and so, here we are. I say all that to say that I have no plans to stop again.

This time, I’m here to stay.

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.