Saturday, January 9, 2016

Looking Back--a Timeline

Hello again, All,

Since my last blog post, I've been getting a number of questions on the specifics of my treatment over these past three crazed years and so, since it's high time to look back on it all from this particular peak, here is a timeline.

*Warning, contains a smattering of medi-shop-talk, numbers-wise.*

January, 2013:

-Hospitalized for acute renal failure, kidneys at ~20%.
-Diagnosed with Microscopic Polyangiitis, significant previous kidney damage and hypertension.
-Released after a couple weeks on a boatload of daily meds, including 60 mgs of prednisone/day and chemo infusions every three weeks and full-time antibotics.

June, 2013:

- Reached medical remission after 8 rounds of chemo.
- GFR, (kidney's filtration rate), hovering around 38.
- Over a few months, tapered to 10 mgs prednisone/day.
- Began maintenance phase consisting of 5, 500mL infusions of Rituximab over the next 18 months.

February, 2014:

- Diagnosed with chemo-induced early menopause.
- GFR, still at 38-ish.
- Reached 5 mgs of prednisone--excruciatingly reducing by only 1 mg per taper since reaching 10mgs.
- Still in medical remission with negative MP0/PR3 levels, but with positive ANCA titers, (usually around 20, so not too high over the line.)

August, 2014:

-Down to 4 mgs prednisone/day
- GFR holding.
-Remission maintained, though with some disease activity following the flu in March.  Titer increased to 1:100.  I had one month+ of extreme weakness, (couldn't walk for more than a few meters without being winded, with intense leg pain plus many extra pain(s)), following the flu fight.. 

November, 2014:

- At 3 mgs prednisone/day.
- GFR still around 38.
- Down to half of the amount of meds prescribed upon hospital release.
- Medical remission maintained.

January, 2015:

- Slowly and painfully reached the coveted 2.5 mgs of prednisone!  I stayed at that dose for one year, unable to face any more massive and lengthy withdrawal hell that included some formidable depression.

- Medical remission maintained, but with more disease activity following a vacation during which I got pretty sick with fever, diarrhea, fainting and extreme weakness.  Four weeks to bounce back from that.  Titer up to 1:100.  MP0 & PR3's still thankfully negative.

Skip ahead to today:

- Remission holding at 12 months post-final-Rituximab infusion and with the same MP0/PR3 levels as after the very first dose too. 

- GFR still between 38-41.

- Two, two-month+ bouts of (and I thought I knew me some pain, WOW), renal colic over last year or so. 

- EDIT: Because I'm STILL not used to this being a reality and also because I was just painfully reminded of how bad it gets,  this past year also produced an official diagnosis of "Raynaud's" after the symptoms ramping up up considerably since '14.   Raynaud's a vessel-related syndrome which causes the extremities, (including my poor shnoz), to become much colder than they should be for the environment.  Achy, fumbling icicle fingers that require either gloves or some other kind of therapy or it escalates.

I usually nose/hand & foot-freeze until about 5pm each day and then weirdly, usually rather suddenly, too, the hand veins pop and I'm as warm everywhere as anyone else.  

I spend a lot of time with my paws in hot water bowls, above boiling pots and running toasters, or using the hair dryer on me, my shoes, my socks...  It's quite a disruption to daily life as I know it, I must confess.  Glad to have usually an hour's break following lunch, even better/warmer with a glass o' bubbly.

I am now into week two of the FINAL #!%*'n prednisone taper!  This last one will take me to zero, over a six week period and so far, so--ok.

For myself and many other people, prednisone tapering after years of use is just plain punishing.

Each reduction for me at least, guarantees a month+ of deep and gritty joint pain,  sometimes near offline muscle weakness, even more fatigue than usual, stomach problems and weight loss, more migraines, a variety of random stabbing-scream-out-loud pains and for these last few mgs, some grade A, molases-like gripping depression.

I'm collecting crossed fingers and toes to add to mine for this last trip down the prednisone hole, please and thank vous.

It's really something to see it all like this, bird's-eye-view-like.

For those wondering how I'm actually feeling these days/daze, it's still, for now at least, only about a 6 hour day for me.  I can usually pass myself off as pretty normal up until around noon or 1pm, but after that, fatigue and still, notable thoracic pain sets in, requiring me to either lie down on a heating pad for basically the rest of the day, or to take tramadol+paracetamol--which I only do 2-3 days a week for various reasons, urine-production interference and an opiate allergy being but two. 

How many thousands of milligrams of dreadnisone have gone into this lil body over these past three years?

High-fives to every blessed vegetable, fruit and nut that helped me get through it all relatively unscathed.  I thankfully never had to deal with many of the dangerous side effects often associated with long-term/high-dose prednisone use, like: diabetes or serious heart issues.

Yay for healthy eating then, now and always.

I'm SO looking forward to functional adrenal glands once more.

May I never again need to write a timeline like this and moreso, may a cure for this rare and lethal disease become a reality soon, as like with so many other serious autoimmune conditions, the toxic treatments while life-saving, are often downright dangerous and can cause a whole new set of health challenges.

I close this long one with cheers again to every reader of Juan Day at a Time out there, (which is nearing 37,000 hits thanks to you all).  This blog has helped me plenty and I'm glad that that, has helped others who need it too.

+++vibes,

J

6 comments:

Fullmoondolphin said...

You are amazing. Well done, and may this last wean go more smoothly for you. Fingers and toes crossed big time, and I'm sending a boatload of love to you.

Juanita Grande said...

And I thank you for it, mon Amie with a capitol "a".

(((((more hugs)))))

Hugh Judy Rhine Hayes said...

Juanita, I'm so excited and encouraged to hear you are making it to 0 pred! What a warrior you are!

Reona said...

MWAH.....Love you my trooper friend! So happy for your progress thus far...will be whispering a few little prayers pour vous! Love you xx

Juanita Grande said...

Thanks much, Judy.
Some days more than others.
;)

Juanita Grande said...

Thank you dear Reona.
Much appreciated.
Oxooooooo