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Regular Member

Date Joined Dec 2007
Total Posts : 27
   Posted 1/8/2008 12:00 AM (GMT -6)   
Hello all! I've lurked around this forum long enough, I think it's time I come out and say hi and share my story.
I was officially diagnosed with SLE/ Lupus in 2004-2005. The reason I say officially is b/c it took several years to accurately diagnose my symptoms.  I had been suffering throughout my mid to late teen years.  The flares did not come to a-head until I landed a stressful job, which I quit.  I was having severe migraines, very stiff joints, there were days I couldn't move, blue & white fingertips ans toes.
So as of recently my dr. has decided to increase my dose of Prednisone to 20mgs, then taper down from there to 10, then 5 for the next month.  I don't like the 20 mg dose it makes me over-eat, dizzy and angry.   Big FREAKIN Combo!
Anyways so far I'm ok....when I was first given the Pred.  I actually lost some weight vs gaining. (can't say that now...back to the Y)
Snce the increase the side effects are aweful, but I'm trying to make the best of it. I've been twirling around w/ the idea / goal of going to culinary school next year.  but I want to get my health in order before making that huge leap.
thanks for letting me share. tongue
- Meeks82

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 1/8/2008 10:03 AM (GMT -6)   
Hey Meeks!! Welcome to the forum!

(((((Meeks))))))))) sorry about the pred effects. I hope it helps you recover and then you can very gradually taper and see how you do. Many here will say that tapering v-e-r-y slowly is key. Your own body makes cortisone and you need to give it a chance to start doing that again. I think the important point to really decrease slowly is 10 . . . but Ginny or Lynnwood or one of the others will see your post and give you the best number to start really slowing your taper. . . . maybe one of them could also give an example of a taper from 10 mg.

You sound like you are very young . . . in your 20's? I'm so sorry you are having to deal with this in your young life. There is a list of suggestions for new members posted in the "Lupus Resources" topic (link at the end of my signature). If you've been reading for a while, you've likely already taken advantage of those suggestions. But the best advice I could give is to learn a very delicate balance in your life. We (lupans) have a limited amount of energy and we get into big trouble when we push past that limit. Stress and emotional stress will subtract from that energy as fast or faster than physical activity . . . learn your body's signals for rest time and make sure you take periodic breaks during the day to recharge. I know it sounds weak . . . but its how we stay out of a flare (along with a fair bit of luck).

Make sure you talk to your doctor about the Anger while you are on high doses of pred. He will likely be able to give something to calm you a bit so you can make your way through those difficult times.

Glad you finally decided to post . . . . I look forward to seeing you around!!


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

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/8/2008 10:13 AM (GMT -6)   
Hi meeks and welcome - I'm glad you officially joined us. The prednisone can be such a double edged sword - it can help so much but the side effects sure stink! Like Rosie said, the key is really tapering slowly. It sounds like your rheumy is tapering you pretty fast, so make sure you stay in touch with him, especially if your lupus symptoms start getting worse as you decrease your dose. I wouldn't be able to function without my prednisone, but I hate how hungry I am and how much weight I've gained.

As you can probably tell, we have a great group of people here who are very supportive of each other through all the ups and downs of this disease. It's so nice to be able to come to a place where people can really relate to what you are going through. Please ask any questions you have.

Take care and I look forward to hearing more from you.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Co-Moderator: Lupus and CFS Forums

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 1/8/2008 11:55 AM (GMT -6)   
The speed of the taper depends on the amount of prednisone you've been taking, how long you've been taking it, and how you react to the taper.

In my mind, there are 2 very important pieces of information to remember --

1) Do not go down too fast, especially when you get lower than 10 mg, as this can cause dangerous effects -- the most dangerous being to cause a heart attack. This is because your adrenal glands naturally produce 5-7mg of an equivalent substance, and they may have stopped production when higher doses of pred are introduced. The slow taper here is to give them time to start working again (and in some people they never start working again).

2) Don't go down if your body is still complaining about the last drop down. For instance, if you drop from X to Y, and your body complains about Y, stay at Y for a few weeks until the body adjusts -- don't go down to Z until the symptoms are controlled with Y.

It seems most doctors do larger drops at higher dosages - like 10mg at a time; but do smaller drops at lower dosages, like 1-2 mg at a time and wait 2-3 months before the next drop.

Opps -- just reread your post -- your dr is suggesting a SHORT time at 20mg, then a quick drop down to what I guess is you regular dosage??? In that case none of the above apply -- for short term use a quick spike is used often and is usually effective.

I've found that since I now am aware of the urge for empty carbs with prednisone, it's much easier to stop myself from eating them. Before I didn't realize what was happening, and really didn't like the result! Now when I feel that urge, and can't resist it, I at least am going to higher-quality food - like lean protein, a bit of cheese, or 8 oz of orange juice.

Hope you feel better soon,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 1/8/2008 12:47 PM (GMT -6)   
Hello! I think anyone on prednisone should consider culinary school. I know I can dream up some amazing things to cook and eat! Seriously, I hope you follow your dreams and become extremely successful. I have a cousin who just started as a chef 1 in a resort in Vale Colorada and she is having a blast. Good luck and God BLess, Judy

P.S. I'm about to try my hand at Chinese fried rice (don't look at my plate Lynnwood!:) I'll throw in some chikcen for protein!!)

Regular Member

Date Joined Dec 2007
Total Posts : 27
   Posted 1/17/2008 10:12 PM (GMT -6)   
Thanks for the replies everyone.
Sorry for taking so long get back here :-]
Brief update on the Pred. spike....
as of now I'm taking 5mgs as prescribed, then after that I'm down to 2 mgs
meanwhile I've been eating carbs like a MANIAC,  me and  carbs dont get along so good nono .  I look kinda preggo. I'm sooooooo hungry all the day long.  Can "lupies" take appetite suppressants?  My dr. told me that it shouldn't be a problem depending on what I take.  Is this true?
 BTW: I'm 25 ( 26 in 3 weeks) 

Post Edited (meeks) : 1/17/2008 9:23:33 PM (GMT-7)

Veteran Member

Date Joined May 2005
Total Posts : 7720
   Posted 1/17/2008 10:39 PM (GMT -6)   
Can you try switching to "good" carbs -- fruit, vegs -- my daytime snacks are usually bananas, raw almonds, prunes, soy nuts, hard-boiled eggs, yogurt,....???

That carb craving is a b i t c h ! I wish I knew a way to kill it dead!

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions

Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 1/18/2008 5:47 AM (GMT -6)   
I eat popcorn, fruit, and veggies when I crave carbs. I have looked pregnant since my first baby- I had a 24in waist when I got pregnant and then when I delivered my belly was touching my knee caps when I sat down. I am currently pregnant so I look even more pregnant. I wish you luck, I am in the middle of a prednisone taper myself. I was put on it in August but only at 5mg then in Nov is was raised to 10mg but now I need to get off it within a few weeks, the faster the better so my taper is faster than we usually would do. I went from 10 to 7.5 and the plan was 1 wk but I got an infection so we will see how I am doing Saturday. When I go down again it will be to 5 for a week and then 2.5 for a week and then 2.5 every other day for a week and then off completely.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone, Imuran, Procardia

Regular Member

Date Joined Oct 2007
Total Posts : 100
   Posted 1/18/2008 10:49 PM (GMT -6)   
Welcome Meeks...
I was a "lurker" until recently too...  LOL
I can only relate my pred tapering story.  I tried dropping 5 mg at a time (I was at 20 mg/day).  It was disasterous.  Severe headache, joint pain, fatigue (as if all those aren't enough with lupus!).  Anyway, I asked for 1 mg pills so I could drop 1 mg at a time.  Tried every two weeks and that seemed to work.  Recently, I decided that I needed off of it faster (we celebrate our 25th anniversary this June - plus I have a son graduating from Penn State and a daughter graduating from High School).  I didn't want my head to look like a satellite dish in all the pictures.  I decided to start dropping 1 mg / wk rather than every two weeks.  However, I'm wondering if that is backfiring on me because my joints are hurting (not unbearable) and I've had three migraines since January 1st.  Most recently, today.  So - I didn't do my prednisone drop today...think I'm going to leave well enough alone for another week.  My sister has RA really bad - and she warned me that it took her eight months to get off of prednisone.
I was only diagnosed in July 2007 with lupus.  But - the one thing I have learned is that you are the expert on you.  If you haven't researched lupus and the drugs associated with it - please take the time to do so.  Sometimes the docs get tunnel vision.  I know the docs want us off of the prednisone ASAP.  But, I'm learning my limits with that (although, I've been pushing the envelope lately).  I get scared when I re-read about how prednisone shuts down the adrenal glands...  Mine have been shut down for six months now...and my best case scenario is being off by the middle of April.  Lynnwood's comment about sometimes the adrenal glands never start working kinda knocked me on my butt.  Never occurred to me that they wouldn't start working again
I do agree with the frustration of the weight gain and hunger.  The other night I shoved 4 cookies in my mouth and then made brownies...then I sat down and thought WHAT THE HECK AM I DOING!?!  I gotta get this figured out.  I've never weighed this much - even when I was nine months pregnant!
Anyway - welcome again meeks.
SLE: 07/07, Irritable Bowel Syndrome, migraines
400 mg. plaquenil, 25 mg. prednisone, 2400 mg. ibuprofin, 15 mg. methotrexate, folic acid, asacol, caltrate-D, wellbutrin, paxil

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