Side Effects, Though "Very Rare" Can Be Real!

The Source of my "Unhappyness"?

Onchofin, Terbinafine - Anti-Fungal ?

I'm much better compared to my last post.

No more dark thoughts.

Now, it is just me, frustrated, constipated and shedding!

I immediately improved after I stopped the above anti-fungal meds.

I've been on it for the past two weeks and little did I know it messes with me head!

The "Unhappyness" grew, I cried and told my hubby I wanted to give Sophia away!

I love Sophia, how could I even think of such!!!!! Idiot ME!

I've completed first month's treatment, two more months to go!

Must remember to pinch and not let myself drift away !!

Three months treatment just to get rid of nail fungal!!

Bad Mr. Cloxacillin

Bad, bad Mr. Cloxa.

You made my buttock itch like mad at 2 am!

My left ear looked like a steamed lobster.

Guess what?

I am dumping you.

I'm seeing Mr. Erythromycin now.

He is much nicer and caring too.

At least, he is after meal,

Unlike you, before meal.

You are truly a mean, mean Mr. Cloxa.

P:S: Had allergy reaction towards Cloxacillin. 

This other doc thinks IT is an infected cyst. IT continue to look red, swollen and ugly.

I feel unpretty.

I am so tempted to hit this 'thing' against the wall, hopefully IT will go away!

(or IT may return very much bigger and stronger!)

Mr. Cloxacillin

Q$@#%!#^!#$^!#$^#

I went to the doctor today.

For a lump on the left of my forehead that hurts,

And feeling a little feverish,

Ms. Doctor thinks it is a super big ZIT (boils).

Gross.

Mr. Cloxacillin, 

2 x 250 mg , every 6 hours for 5 days.

Two dose, 12 hours later,

My left ear is now hot, swollen, red and itchy!!

Brrrrrr... #@%#@%$@$#$#!$

Benlysta (Belimumab) : To Treat Lupus

Yay!
Benlysta (Human Genome Sciences / GlaxoSmithKline), the new breakthrough drug for lupus.
Especially for Lupus.
Approved by FDA to treat lupus!

So, why are all Lupie's' so excited?
Well, this may come shocking, but there are only 3 drugs approved to treat lupus by FDA, namely Asprin (1948), Corticosteriod & Plaquenil (1955) up until now, Benlysta (2011)

Hold your horses though (cats for some of us ...)

Here are two interesting facts on Benlysta :-

Although African American are known to be more predisposed with Lupus, yet, in clinical studies, they have shown not to respond to Benlysta. (How about Asians?).

And, cost of Benlysta ...... drum roll pls .......
Estimated at USD 35,000 per annum , translated into RM 100,000 (a year!!!!!)
Cellcept that I'm taking, costs about RM 15K - 20K a year and I had to step on "many" feets to get it.
Imagine Benlysta, I need to take someone 'hostage'?

How does it work?
Will it cure, induce remission or ... just control (like all the other drugs?).
I don't know.

The price tag is beyond rich  reach to me at the moment, but, well, who knows? I might strike a lottery one of these days.

Benlysta will probably take another 5 years before it reaches our, ahem, mighty nation. (Hopefully, no drug recall by then)
Another 10 years for generic?

Sigh ...

Oh well, at least, it is a start ...

Queen Lupie

With a crown.

I shall bestow upon myself, a title befitting myself  - Queen Lupie

(yikes! what sort of English is that?)

Heck, the crown is not even fitted yet!

My soon-to-be-fitted-crown-may-look-like-this.

Hmm ... maybe not that 'gold' ..

Probably 'nickle' ..

Heck, I don't know.

My super huge filling (of my upper left molar) "dropped / chewed / cracked" off yesterday (Happy Valentine's Day!) while I was having a bun! Hmmmm....

I panicked as today is a Public Holiday in Malaysia 

(Today's my "Chinese (i.e. Lunar)" Birthday too!)

Still, with the purrs of the kitties indoor and outdoor, I've managed to see a dentist today to resolve my woes, temporary at 32T Dental Clinic. (Dentist in Puchong area)

To put it short, I need a crown, for I'm a Queen with mighty ....  small coffer.

I shall revamp the tax structures!!

The people shall pay for my Crown ... muahahahah...

Still,

If only there are tax payers.

Sigh.

Another lupus ranting brought to you by sillylupie.com.

P:S: Not all bad - I was at Hospital Selayang yesterday and the Nephrology doctor wrote "Renal Remission" Yay!!

My medications are now slowly being tapered down to lowest possible maintenance dosage!

Yay!!

And I'm getting a crown soon...

Yay!!

(This is when the Credit Card comes into the picture.)

Long Live the Queen!!

LOL : Your Meds. Take Them.

see more Lolcats and funny pictures

Your meds. Take them.

just bewayr ob teh sied fx.

This is so-so-so funny.

It is like MY REMINDER for today.

Woke up late - my meds timing all screwed up.

And there I am, at 11.30 am still haven't taken the rest of my "after-meal" meds.

Until,

A Kitty Reminded ME!

Nephro Says... Rheumy Says ...

Wolfie Says ... "Don't worry Mom, SpiderMeow is here"

I'm very depressed.

Nephro thinks I'm okay,

Rheumy thinks I'm not,

My steroid is upped again.

I almost snapped at the doctor.

I said I don't want my steroid upped 

(to 12.5mg frm 7.5mg)

Up, Down, Up, Down

I almost, almost cried.

I felt like Alice in Wonderland.

Is this real, is this pretend?

I'll get by,

I'll survive.

(Avril Lavigne - Alice)

Then, doc mentioned "stroke" - Risk of stroke.

And he said he is not trying to scare me.

Headaches, dizziness, migraine, low potassium ..

600mg Potassium Chloride ... big yummy yellow candy on a daily basis ... yay!

Welcome to My Wonderland...

You can call me Alice.

Slow-K

Slow-K - the meds/supplement that the Doc. prescribed for low potatossium.

At first I thought - hey what a cool name for a med.

"SLOW-K"

Sounds like a rapper's name.

You know like Puffy-D, Jay-Z..

I'd call myself "SLOW-K"

Isn't that cool?

Next thing you know, I'd be rapping away.

Lucky will be "LUCK-K"

What is SLOW-K?

It is "Potassium Chloride" used to replenish, what else? Potassium - lah.

AND,

A not-so-cool fact about "Potassium Chloride" ?

It is used in "judiciary execution via lethal injection".

Hmmm...

Medical Monday : The results are IN!

Full Blood Count is within the normal range!

Even my RBC (Red Blood Count) came out normal!

4.32 - okay lah borderline normal but it is a great change from borderline "low"

And, liver albumin is up.

No protein detected in urine.

Except for Mr. Potatossium, which is borderline "low".

Lower than the test I had when I was pooping in my pants.

3.0 (did not poop in pants) vs 3.3 (poop in pants)

Nevermind.

I'll eat lots and lots of bananas!

Had a little peek at my skin biopsy result.

"Dermatofibroma" - benign, no malignancy - so it is all good!

Plus, prednisolone dose was tapered further, now 7.5mg daily.

MMF remains at 2gm a day.

All other meds remain.

Cautiously, I may be on my way to remission!!

P:S: Stuffy nose, to see another doc next month.

Till then, it will be me and  ..

P:SS : Thank you ALL for the constant healing purrs, prayers, blessing !!

Maniac Monday

Apparently I am "famous" ...

Ohhhh Wahhh ....

(abridged version)

Doc : So, how many cyclos have you been through?

Me : Once

Me : I am on MMF (CellCept)

Doc : Ohh ... so you are the one who complained till up there?
http://sillylupie.blogspot.com/2010/04/encounter-with-blur-blur-sotongs.html

Me : Huh? Yes?

Doc : You are famous

Me : Hmmm...

(P:S: I am "pissed")

I bet they have little black stars on my records.

Damn.

I am beginning to feel like "Monkey God" who created a ruckus in heaven and eventually imprisoned for centuries?

Photo courtesy of http://foxradio.com/?p=pages/promotions1/miss_sturgis_contest_at_monkey_rock

Sexy Saturday ....

Hello all,

This is Lucky, taking over from Meowmmy who has an VICKS inhaler stuck to her nose. Not a pretty sight I tell you, already her nose is kind of big for her puffy face - so, go imagine.

Lucky is doing great, except of a little wound of me tummy - Meowmmy is applying some sort of a smelly "aryuvedic" cream on it. Gosh, it is overwhelming - the 'smell' I mean, reminds of me "smelly boy-boy" - Well, who is boy2 if you ask? It is Ginger, also known as Beckham but when mom gets very mad and yells, it is always "BOY-BOY!!" - serves him right for he is always attacking Lucky from behind!

Okay, okay - back to the topic ... obviously it is so, so, so "ME"! Besides looking sexy, Lucky has now learned the art of balancing myself and licking my er...er.. "balls"!! So, it is all good for Lucky.

Meowmmy, on the other hand has been coughing big time. She went to see the doc at the FEVER CENTRE (again) on Monday. Apart from blood test, they did an X-ray. It came back to be slightly "unclear", so Mom is now on a more powerful antibiotic (cerufoxime axetil) and asthma tablets (salbutamol). She said this time, she is at a record high of pills taken in one day!

white : cerufoxime axetil 125mg / red : salbutamol

Mom is having heart palpitation, tremors (yeah, she rocks!) and muscle spasm - all the common side effects of salbutamol. 

Two days ago, she discovered a tongue ulcer, so she now talks very funny - almost like a cat. :)

Is mom better? Well, she is still coughing although not that much but she has phlegm all the time, sometimes it gets hard to breath, especially when she is asleep, it startles her when she can't breath - so the VICKS inhaler is always by her bedside.

Lucky hope Mom is not having asthma, I hope Mom's just purring in her own way.

Is this all in my head???????

I've taken 1,2,3,4 ...... 14 Cellcept 500mg.

First two days, I felt a little nauseated...
Now, I am hungry all the time...
My hubby said I've behaving strangely since yesterday.
He said I have been "hyper-active" - huh?

Am I getting better? Or is this all in my head?
Or Am I having mental problem?
Or Is it the fact that I'm taking such pricey meds making me feel better?

Strange ...

Feeling under the weather ...

I've not been feeling well lately.
I feel very, very tired ...
So tired that I just wanna fall flat and hibernate for 2 days.

It could be due to the reduced prednisolone.
I don't know.
My body just wouldn't speak to me at times.
It has a mind of its own, like when my legs cramp in the middle of the night! I think they wanna go TESCO at 3.00am! My god!

Enough about my sexy legs!

I had my blood taken this morning for the usual health-screening test.
This is before my CELLCEPT, I want to have some data to compare to - you know, like those "before, after" photos.

The doctor I met yesterday said, after punching some numbers, factors onto a calculator - my kidney is functioning at 56.7%. Honestly I don't know how he gets that but, it is a scary number to me.

I feel like puking now, probably CellCept, or the roadside burger.

Helloooooooooooo.... Cellcept

Hello Cellcept .... :) (also known as MMF, Mycophenolate Mofetil ....)

Wish me luck that Cellcept works!
Otherwise, it will be "Hello....IV Cyclo" again
Starting tomorrow - it will supposedly make me puke big time?
Probably not as I loooovvvee to eat..

Thank you Dr. W & Dr. B for understanding!

BP is on the high side again, new meds introduced - 4mg Perindopril Erbumine daily, in addition to current 10mg Amlodipine Besilate.

It is funny how I end up getting Cellcept, I believe it was "divine intervention", like in my driving test!

Yippee ... my preds is now down to 20 mg ...

Officially, on 1-Apr-2010, my preds has been tapered down to 20 mg ...

Bravo ... bravo ... clap ... clap ....

But ...

It is not that I am getting better ...
I am still leaking protein.
It is just a norm to reduce preds with IV-Cyclo treatment.

No more P-Power ... well, it is a good thing though. I've reached the point that that preds are giving me more "bad" instead of "good". My face is so round like Doraemon, just need to dye my hair blue and put on some Geisha face powder and presto, the acting contract is mine. Overall, I look like Michelin, not Michele Yeoh!!

So - if anyone wants a mascot (Doraemon or Michelin (NOT MICHELE YEOH!)) for their kid's birthday party - pls contact my manager, Lulu Girl for further details.

Clumsy, Silly Lupie ....

I thought I am silly, but hey, I am clumsy too.

I slipped and fell on my back in the bathroom yesterday morning, I yelped like a dog.
So, yesterday it was SLIP, FALL, YELP, BLOOD TEST, DENTIST ... all on a Monday morning!

My waist, buttock and upper abdomen hurts .. no laughing, giggling or sneezing. My toes freeze (cramp) up too at times. It is funny to see my toes trying to curl up and I end up talking to my toe! I say, "Hey stop it, you silly toe, back to your position!"

Seeing the Nephro tomorrow to review if I am up for another round of IV-Cyclo !!
Life is oh... so exciting ....

Hellooooo... IV Cyclo

My first encounter with IV Cyclo ..... :) It was in a bag presented as a clear liquid, with my name written on the label.

It was done at the "Day Care Complex" of Hospital Selayang - I was there before 9.00 am and after waiting for about 45 minutes, due to some confusion (and also me, being a first timer), I was asked to change to a "hospital gown", five minutes later, they realised it was not required and I had to change back to my own clothes. Plus, I was suppose to go direct to the "Medicine Section" and not wait 45 minutes at the waiting area! Never mind that, only proves that I am not the only confused person in the world!

The kind nurse asked, "bed or chair?" - she recommended bed as it can be a long job! Okie, fine by me. She then started an IV line on my left wrist, took some blood for test and then, saline drip.

Doctor then came at about 12 (I think) look at some results before giving the "okay" to proceed. Nice doctor, made me feel good when he said "once you are our patient, we will take care of you, come to us if you have problems" - yes, this is the "Nephrology Doc" speaking.

With the saline drip on, it made my bladder very full and I had to go release! Yes, that's what it was supposed to do exactly, flush my system. I then realised they had a special locked toilet (with a golden key to unlock) for chemo patients!!

By 13:30, saline drip complete, now for the "real thing" - IV Cyclo. Before IV Cyclo, they injected via the IV line a big syringe of "anti-nausea" solution. At 13:45 the IV Cyclo begins - I tossed, turned and slept.

IV Cyclo drip was completed about 2 1/2 hours later, then another bottle of Saline followed. This time, the Saline drip was on "speedy gonzales" pace - in less than an hour, it "finishto" and I was ready to go home with 3 tablets of anti-nausea drug.

Did I feel nauseous? Not really - hunger had taken over! :) Imagine I only had breakfast, no lunch! What's there to throw up?

IV Cyclo ... here I come ....

Kidney Biopsy Result : Lupus Nephritis Class III (A) and V

OC Final Diagnosis

SUMMARY : RENAL BIOPSY : FOCAL ACTIVE WITH MEMBRANOUS PATTERN, CONSISTENT WITH LUPUS NEPHRITIS ISN/RPS CLASS III (A) AND V.

There you have it ...

I now have Lupus Nephritis Class III (A) and V.
Activity Index : 7/24
Chronicity Index : 2/12

Oh man, I do rock!
I appear to get worse with time ..

First flare - low WBC, low BP, fever - into ICU but recovered relatively quickly

Second flare - low WBC, low platelet, fever - hospitalised for weeks ..

Third flare - "THIS ONE?" - didn't even realised it was happening! I thought it was just one of my "unwell" days!
(Now we know why they say there are very few signs or symptoms of lupus nephritis! Even my rheumatologist thinks I look fine when I last saw her, yeah the one doc who got me steam blowing of me head!)


Overall,

Bad News - it is Lupus Nephritis,

Not-So-Bad News - it is Class III - very early stage of more advanced lupus nephritis.

Scary News - Treatment plan is corticosteriod and IV cyclophosphamide (cylco) a type of chemo-drug once a month for 6 months to induce "remission". Side-effects can be overwhelming to a duck-wannabe like me - especially on the part that I "may" risk laying infertile eggs in the future with the "cyclo" treatment!

My first IV "cyclo" will be mid this month - wish me luck! My whole birthday month is full of hospital appointments, blood test - oh man, I rock again!!

Bring it on .... Varicella-Zoster (you "chicken")

(YIKES! Looks at the expiry date? YIKES? probably a "recycled" container ... fingers crossed!)

There you have it - antivirals - Acyclovir 800mg - 5 times a day for 10 days at an 4-hrs interval!! (Again, why am I on antivirals? Well, that's because I am on "prednisolone", medication which suppressed my immune system and now, I need some extra "help", you know like a "hired gun" in mafia... to fight off the "buggers")

I took the first dose at 11.00 am, Sunday (has to be taken as soon as the first onset of rash, which was Saturday, afternoon ..)

Is it working? I don't know! I still "itch" like mad - more "popping" out!!

Calamine lotion helps with itch but I feel like "scratching" it!!! This is surely a test of patience!!!

Aaaarrgggghhhhhhhhhhh .....