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