Predisone question

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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 5/30/2008 11:28 PM (GMT -6)   
Doctor called the other day because I was having trouble breathing. She( her nurse) told me to up the dose to 60mg a daily. I have plenty of back up steroids so she didn't call in a perscription. Anyway she has been out of the office and I am trying to figure out what I should do. I hate being on these stupid ROIDs!
Also 16 days ago the rheumy took me off of plaq and I'm starting to notice aches and pains that I didn't have for a long time. My knees,buring in my shoulder. This probably sounds funny but somtimes it's hard to tell if it's autoimmune aches or getting older aches. I'll be 51 on the 16th. eyes . Anyway how long is the longest amount of time and highest does of steroids have you ever had to take? The only reason I have been able to come here and try to help support others is because I'm on 60mg. steroids. I know when I cut back I'll be back in bed again.
Life Sucks! I want to be happy and smiling again and making jokes on the board. Even in pain I still have been able to keep a sense of humor on most days. This just doesn't feel like me anymore.
If you got through reading all of this congratulations you have just listened to rantings of a psycho on steroids.
love ya all
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Veteran Member

Date Joined Dec 2005
Total Posts : 1944
   Posted 5/30/2008 11:55 PM (GMT -6)   
Oh ((((carol)))) I hope you feel better. Tell your friend she is definitely right about the provigil. A really great drug. It opened up my bronchial tubes and lungs, it is a vasodilator, and when I first took it I coughed up what I normally aspirate at night and I could really breath, better than any asthma med so far. It was great. It gave me my brain back and energy with no steroids. I have COPD (chronic bronchitis) that is pretty mild and it helped me as much as advair or more. The COPD can be related to liver, liver disease causes asthma sometimes due to increased histamines.

So I"m here for crazy steroid chat! I'm ready to nominate the inventors of provigil for a Nobel prize. What a good drug.

Carol, I have taken 20 mg but I'm sure some of the shots I got were twice that. I've also taken pretty large amounts of dexamethasone before, which seems to have little effect on me except to reduce swelling in my back. I've had shots that were so strong they made my ears ring and made me hear things and feel really weird, definitley too strong.

Can something you are taking actually be hurting you more than helping you? You would know more than me. It doesn't seem like they get you much better and I always hope there is something more they can do without putting you through the steroid side effects.

I was ready to beg for them when he gave me provigil, and it helped, but not for what you have. I think he's trying to separate steroids for mental and mild symptoms vs. for more major flares. Thnks so much for your help with that.

I hope they get you better managed somehow so you don't have to take so much steroids. Will keep you in my prayers.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 6/1/2008 7:57 PM (GMT -6)   
Carol, I can't imagine being on 60 mg of pred. My heart goes out to you. I think 60mg would have me bouncing off the walls and feeling a bit crazy. I hope it helps your symptoms though. Hang in there. Lots of (((((hugs))))) and prayers.
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; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 6/1/2008 9:58 PM (GMT -6)   
Hi Carol!!!  ((((hugs))))
Oh honey.  I've been on that much pred and more.  Last year, I was on 125mg of the stuff for 3 days!  WOW. That was an experience. I was tapered to 60mg for 1 week, then 50, 40 so on and so on.  I was back down to 10mg within about 3 weeks.  It's amazing how well prednisone works at those high doses.  I'll bet your rheumy tells you to start the taper soon.  Maybe you'll be on a moderate dose for a while, and your moods will level out more.  I understand what it's like to need those high doses. Let it do it's thing, even if it makes you feel like a raging lunatic!  You'll feel so much better physically.  You can do this.  It's gonna be okay!  Just remind yourself that if you get feelig crazy, it's just the medication talking.  Not you.  It's just the drug. 
Keep in touch with us through this Carol.  I know it's hard, really hard.  I've been there too.
Lots of hugs,
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

34 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, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Jun 2005
Total Posts : 533
   Posted 6/1/2008 11:02 PM (GMT -6)   

Hi Carol,

I can't really help you with Pred since I can take it, but with the plaquenil...  I have stopped taking the plaquenil before and it only takes a couple of days and I am in pain.  I have a friend who is also on it and she can't tell a difference when she stops.  I know for me that whenever I stop plaquenil and then start again the pain subsides somewhat.

Hang in there.  You will be in my thoughts and prayers.


Mary Ann

** MCTD,Fibromyalgia,Raynaud's June 2005
**Pulmonary stenosis, High blood pressure, IBS, degenerative disc disease, vertigo
**Meds:  Plaquenil, MTX, Lyrica, Folic Acid, Metoprolol, Lotrel, Vicodin
 "No matter what happens, God is in control.  He is God, I am not, what a relief!"

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 6/2/2008 8:01 PM (GMT -6)   
Thanks everyone. I'm doing my best to hang in there. I just want this to go away.
Ginny they would have to put me in a rubber room on 125mg. I don't know how you did it!
Right now I have my air conditioning turned down so low that it's about to freeze me out. I'm hoping it will dry the place out and make it easier to breath.
thanks again everyone
love ya
God Bless
Depends on which rheumy you ask! stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Regular Member

Date Joined Jun 2008
Total Posts : 88
   Posted 6/3/2008 3:32 PM (GMT -6)   
Hey this is my first time in the forum. I read your rantings, and wanted to let you know u r not alone. I was in the hospital over a year and a half ago and am still being tapered off of 60mg of prednisone. Believe me I know it sucks! Also, have u ever been to a cardiologist? If u r having problems breathing, it could be something with your heart and it will be much easier to deal with if caught sooner than later. When I wound up in the hospital, it was because I was having trouble breathing. Come to find out, I had congestive heart failure and my rheumatologists had not caught it! But thankfully we caught it soon enuf that we were able to treat with meds instead of surgery. just something to think about.
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