Alternatives to Prednisone

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halfcrazy
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 12/12/2007 7:35 PM (GMT -6)   
So I have my "first" flare up, and obviously I'm none too pleased about starting the prednisone again.  After being on "the lowest dose possible for a flare up" according to my Rheumy, (15mg xtwice a day) I came back in to find I had gotten worse and he subsequently increased it to 20mg twice a day.  I'm panicing because I had a really bad experience the first time I was on high dose prednisone.  I know I may be childish, I really don't mind the weight, it's the face thing that I hate, and the knee pain that I get.  Maybe I'm just ranting.  Maybe I'm being irrational and should just go along with whatever I'm given.  But a part of me really wants to know if there is some sort of alternative to prednisone.  I swear, I've been having bad dreams about it...alright well thats kind of a different tangent.  I really just want to know if anyone is on/has heard of some sort of alternative? 
Thanks in advance.
-Halfcrazy

Rube: You like falling, do ya?
Betty: Well, it's not the fallin', it's the jumpin'.
Rube: I'd feel a whole lot better about the jumpin' if it weren't for the fallin'.
Betty: Fallin's easy, you just fall. Jumping involves strength of will.
Rube: Unless you're on a plank

- Dead Like Me


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 12/12/2007 11:13 PM (GMT -6)   
Hi Halfcrazy,
 
I know it's hard being on those high doses of prednisone.  I don't like the "moon face" either.  What other medications are you taking right now?  There are alternatives to prednisone, but honestly, pred is one of the very best ones to be on.  Are you taking any immune suppressant drugs? 
 
I would love to be off pred as well, but it has saved my life.  I look at the pros of being on it and man, I would take the moon face, weight gain and emotional rollercoaster rides over a massive flare up that could kill me, LOL!  Take it in stride, girl.  You'll get through this and you'll be on your way to lower doses and that moon face will disappear!  But you have to let the med do its job first.  Then taper slowly, 2.5mg every two weeks.  NO faster.  You'll see that puffy face start to go away when you hit 10mg a day.  Lupus isn't a get well quick kind of disease.  It takes time.  You deserve to be well.  Let the meds do their thing, okay!  It WILL get better, but it takes patience.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


halfcrazy
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 12/12/2007 11:23 PM (GMT -6)   
I know I sound really whiny and ish . But it took so long for the pred to come down last time. I just feel like I'm back to where I started with no progress. It's kind of confusing. Okay, really confusing. sad I'm on 2g of cellcept, 50mg of topiramate, iron, calcium, and vitamin d. I feel blessed that I was in remission for a year but I just feel confused that lupus can suddenly come back. And mad that it's my senior year and I'm going to have to spend it on this high pred dosage. =(
Thanks for your thoughts
-Halfcrazy
Rube: You like falling, do ya?
Betty: Well, it's not the fallin', it's the jumpin'.
Rube: I'd feel a whole lot better about the jumpin' if it weren't for the fallin'.
Betty: Fallin's easy, you just fall. Jumping involves strength of will.
Rube: Unless you're on a plank

- Dead Like Me


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5511
   Posted 12/13/2007 12:01 AM (GMT -6)   
Oh geeze.  Yeah.  I know your frustration and sadness.  I really do.  I was in remission for 4 years! Then this summer it all ended.  Just like that.  I was back on a moderate dose (20mg) for about a month, and amazingly, I think my body responded to it super fast and I was able to taper down to my maintenance dose (7.5mg) within a couple of months.  Maybe it will be the same for you?  It could happen fast and effectively. 
 
Congratulations on graduating this year!  You know.... I can completely relate to how you are feeling about the puffiness in the face, weight gain, all that stuff.  And trying to do your best on your exams and then prom..... I was in a flare for my wedding.  I had the moon face for my wedding pictures...... Sort of the same kind of situations aren't they.  Even though I was dealing with my lupus and on all those meds, I had a blast.  And I was feeling better, because of the pred.  This medication really does save lives. 
 
I'm not trying to diminsh what you're feeling.  Not at all.  Everything you're feeling is totally valid and expected.  Lupus is unpredictable.  But if you stick to the medication regime like clockwork.  Your body will get better and your remissions will last longer.  Keep fighting the good fight!!!
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
Veteran Member


Date Joined Jan 2005
Total Posts : 8616
   Posted 12/13/2007 12:03 AM (GMT -6)   
(((((((((((Halfcrazy)))))))))

Sorry sis . . . this is a really hard disease for anyone . . . but robbing you of your beautiful face in your senior year is rough. Sending you hugs and some hot tea. Wishing you could feel better w/o the prednisone . . . but hoping it does its job quickly.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 12/13/2007 4:46 AM (GMT -6)   
Hi halfcrazy, I'm sorry you are having a rough time with the steroids. I don't think many of us here like them. but like the others said they are such an important part of helping you feel better. As for your feelings, please don't call yourself childish or irrational. You have a right to feel the way you do. It's hard enough to live with this disease you dn't need to put yourself down on top of it. I'm 50 years old and I couldn't handle it the way you are when I was your ages. It's a rotten draw of the cards. Anytime you want to rant you come here and rant. There isn't a person here that doesn't understand how frustrating living with this is. Like the others said when you get down a little further your puffy face should start to go away. Just take it one day at a time.
huge hugs
carol
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I
 
 
 


Mariepoms
Regular Member


Date Joined Oct 2007
Total Posts : 61
   Posted 12/13/2007 7:47 AM (GMT -6)   
Hi,

I'm with you on looking for alternatives.Temporarily you should take the Prednisone.I with you cause i HATE taking prednisone.I was on 40mg and tapered it when i was having an allegic reaction and i felt like i would kill someone. my blood sugar and Blood pressure went up too.

All the alternatives treatments involve lots of lifestyle changes and disipline with your diet.If you go to Dr Weils website and look up Lupus you will find he has info there on how to decrese inflammation with diet and lifestyle changes ect...If you have the finances,you may want to seek out a doctor who practices in Osetopathic medicine.I made an appointment with a Osteopathic MD for after the holidays.They treat the WHOLE person and not just the parts.They take a medical history like no other MD i ever went to.They really look at everything in your life and family history ect....they treat the whole person.

Good luck and i can relate to your frustration with taking prednisone.

Fran

Victoria72
Regular Member


Date Joined Oct 2006
Total Posts : 221
   Posted 12/13/2007 9:08 AM (GMT -6)   
Hi sweetie.  I am so sorry you are flaring in your senior year.  I have a senior and a junior this year, and I can't even imagine.  You are such a trooper, though.  You just hold your head high and take that prednisone, and taper as soon as you can.  I hate the stuff too, it makes me itch all over and I walk around stoned on benadryl for a couple of months.... haha.  Look up the sites that Fran gave you... I think I may even do the same.
 
Blessings,

 
Victoria
 
Mother of four, full time Systems Analyst
 
Sjogrens, Crohns, suspected Lupus, Pancreatitis Dec. 2005
 
Meds:  Medrol injections; Plaquenil 400mg, Vicodin, Benadryl, Zyrtec


halfcrazy
Regular Member


Date Joined Jan 2006
Total Posts : 22
   Posted 12/13/2007 5:06 PM (GMT -6)   
Thank you so much for the caring responses, I am on the sites mentioned as I type this and am seriously considering the dietary tricks (in addition to) the prednisone  I was once on a herbal route [in addition to the other meds] and it seemed okay, [but alas, no chocolate!] so maybe it would be wise to "take it up again" darn, with the Christmas season so soon too heh...  This site seems like the only place with people who understand/are going through similar/the same things and have real life advice that I don't seem to hear from anyone else. 
Scribbles and Love
<halfcrazy>
Rube: You like falling, do ya?
Betty: Well, it's not the fallin', it's the jumpin'.
Rube: I'd feel a whole lot better about the jumpin' if it weren't for the fallin'.
Betty: Fallin's easy, you just fall. Jumping involves strength of will.
Rube: Unless you're on a plank

- Dead Like Me


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 12/14/2007 11:55 AM (GMT -6)   
i am soo sorry about what u are going through. i actually went through it myself when i was in high school. i flared up the summer before i would start my freshman year and looked like a big 'ol ball when i started that fall, and to make matters worse i actually went into kidney failure during my sophomore year and missed like an entire quarter of school. my face and body didnt even look "normal" until the fall of my senior year. unforunately for us we had to get it young, so instead on concentrating just on being a teenager we also had to worry about doc appts, meds and flares. i know exactly how you feel. but remember high school is only four years of your life, you still have college and everything after that. so we can still take advantage. keep your head held high!
Hugs and prayers,                      If it was easy being a lupie, 
   ~Suzanne~                                      the whole world would be one     
                                                             
diagnosed in May '95 with lupus nephritis, hypertension, hypothyroidism, avascular necrosis (knee) '98, kidney transplant April '06, pseudo-cerebral tumor '07, AVN ankles and hips '07
prednisone, cellcept, prograf, lopressor, allopurinol, synthroid, diamox, OsCal +D, lunesta, celexa, percocet for pain


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2547
   Posted 12/14/2007 12:23 PM (GMT -6)   
halfcrazy,

I understand and sympathize with what you're going through. I hope the prednisone helps and you can get off it real soon! Be sure to talk to your rheumy about your concerns and desire for an alternative. Hang in there.
Lupus, Sjogren's, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, multivitamin, calcium w vit D, fish oil, aspirin

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