Lupus finally controlled-never loose hope.

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Daniellatutu
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 9/9/2013 12:19 PM (GMT -6)   
Hello,

I wanted to share my story so it can inspire positive in your life, even after all the pain this disease caused me, now I feel I am free from it.

I was officially diagnosed with lupus at 22 (I am currently 33). My first symptoms started around 16, with severe pain what would be so bad I could not move. Had to stay in bed. Swollen knees like there was a water balloon inside, and very bad joint/nerve pain. Swollen hands, fingers, cannot move wrist, etc.

I found out that the pain was aggravated by the cold (I live in Canada), so by dressing warmer and not enduring cold (go back inside ;) I was able to minimize the pain flares. I was on plaquenil at this time (400mg/day), but being a pre-adult did not take them as prescribed and forgot them very often....

At the time of pre-diagnosis (18 y/o, had 3 out of the 4/11 symptoms required to 'really' be a lupus patient) I had PTI and anemia (pt count at 2000/ml) which is pretty dangerous. After 2 months of 80mg pred per day (and 50 pds weight gain!!) , still no recovery (ptl count at 20 000/ml) so I had a spleenectomy. This stabilised my blood for one year (this was in 1999). ps-I lost the weight within a year..I walk a lot instead of using motorized transport.

From then on, every year between the month of feb/march to april/may I had a severe low platelets episode. Ofter requiring 3-5 day hospitalisation since it was so low I could have died from internal bleeding. I would be treated with 50 mg/day pred for couple of months then tappered off. (I was living in Ottawa from 1998 to 2003, no lupus clinic just rheumato/hemato every 3-4 months).

Then I got pleuritis, which was my 4th symptom, I was officially a lupy (2002).

The year after, I moved to another city, which had a specialized lupus clinic where I could go for bloodwork when I felt sick, thus preventing dangerously low platelet count. Still had the yearly low platelets, treated with pred. This Lupus clinic is in Montreal, QC. The best drs are there, soooo nice and very good in treating pain and episodes. They also do reseach so it's fun to participate and then read their findings (I am also a scientist).

In late 2007 my father died. about one year later I developped my 5th symptom: hemolytic anemia (of course coupled with low platelets). This symptom did not respond to corticosteroids (60mg/day) or IV-IgG treatments..so I stayed anemic for 4 years (hemoglobin was around 70-90)! Imagine, walking to the fridge and being out of breath. It was very hard for me, I gained 10-20 pounds and felt tired and despaired that no treatment would cure this darn anemia (I was yellow in color, my eyes and my ears were yellow, I felts so ugly and sick).

This caused me to fall into a severe depression that lasted 2 years. I was followed by a psychiatrist for 9 months and very drugged up..I was interned for suicidal issues (only for 24h! phew) then put on zyprexa for 6 months (gained ANOTHER 20 pds + was a zombie).

Since I could not function (work, etc), I moved back home with my family. Then came another set of drs, I am now followed by an marvelous hematologist (my blood condition is called Evans Syndrome, which is supposed to be rare in lupus patients). I had on and off platelet episodes for 1-2 years, now treated with IvIG since pred caused me to be maniac..and also I was on it for about 10 years so..not good.

Then FINALLY, this hematologist treated me with Rituxan...and guess what it worked! He waited a year because it is not approved for lupus in Canada, so you need to prove that you tried EVERYTHING to be able to receive this treatment (or else medicare does not pay). Wow I was anemia free for 14 months..then another round of rituxan and BAM my blood has never been better. And my pain also, fatigue is diminished but I think this might be because of plaquenil and celebrex.

My new rheumatologist decided (on our first appointment together-what a bad move) to remove all my brain meds in 2012...so now I am back in depression. I am changing this dr since I no longer trust his judgement. An appointment with him was: allo, you need prescriptions renewal, ok bubye. I quit him this week.

I am going back in therapy and psychiatrist..but now the brain meds I am on are starting to kick in so I feel so so..but better than before. I went to emergency room for my depression, then my family dr to discuss a treatment plan.

My lifestyle is: eat LOTS of fresh fruits and veggies, not too much meat lots of fish. SLEEP, even if you have to cancel plans..sleep is very important. Also diminish salt and refinned sugar as I find it gives me fatigue. Exercise (I do Jilian Anderson no more trouble zones and yoga as often as I can) but not to intense or else I get joint pain.

Don't feel guilty, eliminate people in your life who have too much of a negative impact. and yes put all your meds in the pill box to make sure you don't miss any.

The point of my message is : don't loose hope and take care of yourself like you were a queen/king. You have only one body, take care of it. The rest will come with it. Also put your meds in this weekly pillbox (yeah I feel like my grandma, but it works). Since I started taking the pill box, eating better and SLEEPING I feel much better.

I am not UV sensitive, nor do I have a rash but I do not go in the sun. I don't want to start some new symptoms. Oh and I also got a pericarditis, which was pretty scary..I tested positive for embolism..but the CT scan proved it was a false positive PHEW!

Anyways..that's about it.

Hope this can help you not loose hope, cause when you are in the bottom of the barrel you might fell you're never going to come out..but you will. Be strong.

my daily treatment: plaquenil (400mg/day), celebrex (200mg/day), citalopram (30mg/day), clonazepam (1mg/day), lamotrigine (100mg/day), vit D (10 000U/week), calcium (500mg/day), folic acid (5mg/week).


(sorry if my english is not so good, I am francophone).

Cheers to you all
turn turn turn

Post Edited (Daniellatutu) : 9/9/2013 1:51:33 PM (GMT-6)


Daniellatutu
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 9/9/2013 12:20 PM (GMT -6)   
ouch this is quite long..try and read it with your coffee. One paragraph a day, you'll be done within a week ;)

xoxo to you all

oh yeah also been on imuran, which did nothing at all...

Post Edited (Daniellatutu) : 9/9/2013 12:45:52 PM (GMT-6)


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7720
   Posted 9/9/2013 12:49 PM (GMT -6)   
Aw, not that long. Thanks for sharing your experiences with us!

I am also one who says sleep, rest, moving some (ie slow exercise), rest, eat as well as you can, use a pillbox, avoid stress, slow and easy,...etc is a great help!!!

For me, I have 6 weekly pillboxes for my morning meds - I can count everything out for 6 weeks and not think about it so much. Definitely helps depression to NOT have to open multiple pill bottles & think about meds in depth every day!!

Your English is fine -- much better than my French would be! lol
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Daniellatutu
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 9/9/2013 12:54 PM (GMT -6)   
:) ty yes I love the pillbox ;) without it you get lazy and forget to take the meds.

wish you the best !

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 9/9/2013 2:02 PM (GMT -6)   
Very inspiring post.
You've had a rough road but so glad things have worked out for you. :)

By the way, I have my weekly pill box too. I also have a small makeup case that holds all of my meds so if there is an emergency my parents can grab it and take it to the hospital for me.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, OA, Depression, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Daniellatutu
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 9/9/2013 2:11 PM (GMT -6)   
I love your quote :)

When life throws you lemons....
Pick them up and throw them right back at them!

very funny and cute:)

Yes I am enjoying my break from this lupusĀ­. TY
Danica SLE/Evans Syndrome

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 9/9/2013 9:33 PM (GMT -6)   
Hi and thanks for your great post. I'm so so happy for you that you're doing so well. Man wish I could say the same thing. It's amazing how we all respond so differently to this disease and how it attacks us so differently.

I've had lupus for 26 years now and I have been on high dose prednisone for 13 years now. I've taken every single medication there is for lupus, including Rituxan. None of the drugs have worked for me and I seem to live in a never ending flare. It's interesting after my first dose of Rituxan my platelets drop a lot, by my 3 dose I had to have a platelet transfusion. They stopped my infusions at that point and we moved on to something else.

I'm currently on MTX injectable 30mgs, plaquenil, and prednisone. Plus a bunch of other medicaitons, I've got more than one disease. My latest diagnosis in May of this year, I have leukemia and actually my oncologist is considering asking the surgeons to remove my spleen.

I try to watch my diet, and I do pulmonary rehab twice a week. I try to stay positive and I see a therapist to help me with my pain management and depression. It's folks like your and another member here Bill who inspire me that you've both been so sick and recovered that great.

Thanks for posting and I hope you continue to do so wonderful.

Hugs,
Barbara
DX- RA, Lupus, Fibro, LGL Leukemia, Pulmonary Hypertension, Bells Palsy, Gastroparsis, Blood Clots, Glaucoma, Chronic Pericarditis & Pleurisy, Severe Anemia. Way to many medications to list.

Daniellatutu
New Member


Date Joined Sep 2013
Total Posts : 10
   Posted 9/16/2013 10:43 AM (GMT -6)   
Ah its sad that the treatments did not work for you. I really do hope that someone will find a remedy for you ills. Much love to you ahd keep your hopes up.

xxxxx
Danica SLE/Evans Syndrome

Teddtlove
Veteran Member


Date Joined Jan 2013
Total Posts : 1037
   Posted 9/16/2013 12:19 PM (GMT -6)   
Wow your story is amazing.
30 female. Sherrie, 2007 UC, 5/13UCTD, Hypothyroidism, Intercostal Neuralgia, Agoraphobia, Bipolar tendencies, Panic disorder, Acid reflux, Lactose intolerance, Eczema, Migraines, Degenerative disk, Hypertension, and Anemia.
Plaquenil, Lialda, Canasa, Hyoscyamine sulfa, digestive ad lactose, Wellbutrin, Cymbalta, Lyrica, Lomotil , klor-con20, VSL 3DS, Rainbow light, Vit D, started Humira 12/31/12

Judewah
New Member


Date Joined Sep 2013
Total Posts : 1
   Posted 9/17/2013 12:59 AM (GMT -6)   
33 yr veteran of living under those shadowy butterfly wings. I would have to write a novel for the uncut pathways this disease has drug me thru. so instead of complaining in fear of what it will take from me next, I wrote something to help me feel like I accomplished another chance at living.I am in chronic pain 24/7 bedridden and have electric wheelchair. I've had lupus for 33 yrs and been hospitalized on my death bed over 30 times. always smile as you try to hold it together for your kids, family, friends and drs. For I have yet to find another disease so relentlessly as cruel as lupus is.


Lupus in Remission

It's been almost five years this time dear Lupus.
You really dug yourself deep in my bones,
Raising hell with my organs and bones
You're not shy and you won't leave me alone.

If it weren't for the combination of nasty medications worse than you,
You would still be killing me slowly with your tricks in full bloom.
Yes this time you etched every organ you missed prior to this,
You hit my kidneys hard in this round,
Then my heart and lungs and blood you took down
Each week something else failing or gone wrong
You had me terrified I would soon be gone

You got in my brain and ****ed with my thoughts,
Making me feel weak and worthless and all.
This time the doctors had to work fast,
So my 44 years back then, weren't my last.

Ha ha I made it alive and out of you're grip,
Just one more chance I don't have many left.
Oh dear Lupus you have stolen the happiness right out of my life,
Why me, I just wanted to be a good mother and wife

I didn't think it unreasonable to stay alive.
But you wanted to turn things otherwise.
But this time I caught you playing in your disguise,
Twas me this time that caught you by surprise!

Ah yes you fought me all the way,
But perseverance drove you to remission one day
Ok so the damage you caused took it's toll on my life,
No hard feelings so long as you stay out of my life.

Farewell until we meet again dear Lupus
For now your free run has come to an end!

It's pretty sad when the only closure to something so devastating comes in the form of my thought and feelings in a poem.
But this has been back to back hurdles I have had to jump, and each hurdle your timing being right..
Let me guess with some accuracy exactly what it would take to win this fight
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