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sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/23/2010 9:40 PM (GMT -6)   
Went to the dr. yesterday and he has increased my prednisone to 40 mg. per day. I have been on 20 for a while in an effort to get my systemic and skin under control. I have had alot of kidney pain with the 20mg along with feeling like i'm hyperventilating does the prednisone have this effect on anyone else and should I expect more problems with the increase? If anyone has any experience on what i should expect I would appreciate it. I have my grandchildren during the day and i'm just hoping that this doesn't send me into a whirlwind as this is already difficult without any added problems. I'm also taking plaquinel, mobic, ambien, and ultram, I don't know if this makes a difference in how the prednisone afftects you or not.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/24/2010 7:54 AM (GMT -6)   
Hi! Sonyalee,
I often feel as you describe when I am flaring with my CNS lupus symptoms, on top of my asthma, and am often taking 20-40mg of additional prednisone on top of the 5mg I need to take every day. It is my miracle cure but I take the higher doses only for as long as I absolutely must, like...to breathe, or stand up. My pcp and my rheumy back each other up, so I feel really blessed in having them. My prescription reads to take for 3 days prn and I get 20mg tabs. When I ended up in the hospital ED in March, my family dr. kindly chewed me out for not taking the dose I needed, and my rheumy prescribes a rescue taper of 40mg/x 1 wk, 30mg x 1 wk, 20mg x 1 wk then 10 and off. Unfortunately, I crashed and burned every 3 months because I needed to stay on prednisone, and finally, and slowly, managed to function with 5mg every day. I resigned my job in June, and  I have just been approved for SSD. Cellcept has been suggested by my dr as an alternative to prednisone, and I have read good recommendations for it. At my next rheumy appt. in Oct, I will have to consider cellcept as my bone density is plummeting. And I hate living on prednisone. It kept me working for 5 yrs. longer than I expected, and giving up a job I loved was one of the hardest things I have ever had to do. I am still really sick, grateful every morning when I struggle out of bed as sick as I fell into it, that I don't have to go to work. It sounds like your dr. is taking good care of you,
hugs, suetoo
ps. I am a gramma, too, and I enjoy only limited time with my grandaughter because I don't have the strength and energy to keep up with her. Think energizer bunny on steroids..... (my darlin' daughter deserves this... tongue )

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. Vit. B12 2400 mcgs, Vit D 1000U and  Ambien every night.

sonyalee
Regular Member


Date Joined Sep 2010
Total Posts : 51
   Posted 9/24/2010 10:33 AM (GMT -6)   
Hello Suetoo, Thank for your reply. I am soo sorry that your health is so difficult. I don't think anyone without a chronic disease understands what a toll it takes on your entire life. It changes everything. I have 6 children all of whom are grown except 2 and they are seniors in high school. I do have grandchildren and have always prided myself on being a good mother and now it seems that I have trouble just functioning everyday. I have always been a very social person and now I find myself dreading having company because I just don't feel like visiting most of the time. My family suffers as I don't have the energy to do the things I used to do. I carry alot of guilt with this but I'm blessed they all understand. It's just difficult to find your way in this life with Lupus as it changes everything. I am currently applying for ssd. I pray I get it. I know it will be a long process though. I like you agree that our children deserve their busy little children. LOL. Thank you soo much for taking time to repy to me. It truely is a blessing. May God Bless you and be with you each and every day. Thanks again.

suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/24/2010 11:36 AM (GMT -6)   
Hi! Sonyalee,
It took my two daughters, who were both teenagers when I started to get so sick,  awhile to see that I was as sick as I said I was cry , and I actually bought a tshirt about their very criticisms. But you don't look sick, or if you just got some exercise, are two of my favorites. I just wanted to let you know that I was approved for disability less than 3 months from the day I applied.  Their online system is very user friendly, and I actually went to our local SSA office for an appt. with a real person. They couldn't have been nicer or more professional. I called first, got sent a packet, built records according to their checklist, spoke to all 3 of my drs, and even included my accupuncturist per the instructions to include "any medical professionals involved in my care". I saw one of their drs. unexpectedly soon due to a cancellation, so I didn't have to dread it. He, too, couldn't have been nicer. I think it helped that I saw my pcp, my rheumy and my neuro in advance, (mostly because last year was the sickest, and most sick, and staying sick year of my life). I don't have any idea how I managed to finish my school year as well as I did, and I was able to discuss applying for disability with them before I even resigned my job.  Make copies of everything, they sent me a 25 page questionaire that took me 2 weeks to complete, and I was very impressed with how quickly I heard from them through every step of the process. I feel so blessed and grateful, keep us posted,
hugs, suetoo
ps. if there is one thing I learned through being so chronically ill, was to live by The Spoon Theory tenet, that if I do this, I can NOT do that.
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