anybody change your own pred dosage?

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Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 9/19/2008 1:10 PM (GMT -7)   
I've worked my way down to 5 mg of prednisone after starting on 15 mg in January.  Now I'm having increased levels of symptoms - more intense joint pain, my ring finger joints are so big I have trouble wearing rings now, terrible nausea at least four days a week, my wrists pop and hurt, severe "cutting" abdominal pain on my right side only.
 
Do you think I need to call my doctor?  Should I just go ahead and add 1 mg of prednisone and see what happens? I had permission to reduce my own dosage; it makes sense that I should also be at liberty to increase it if needed.
 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


PattyLatty
Veteran Member


Date Joined Mar 2006
Total Posts : 2570
   Posted 9/19/2008 1:35 PM (GMT -7)   
Yes, I would call your rheumy since you have an increase in symptoms. I'm sure you were told that you must taper very very slowly and gradually in order to prevent an increase in symptoms. Prednisone is something I don't mess with much on my own, even when my doctor gives me the green light. That said, increasing your dosage by 1 mg isn't going to hurt you, and if you need to do that before you're able to get in touch with your doctor, I'd do it. I hope it helps!

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 9/19/2008 4:11 PM (GMT -7)   
Hi Heartsong, I'm sorry you are hurting so bad. I understand your desire to get off of the steroids but they are a Godsend somtimes. I'm sure it wouldn't hurt to increase a little but you do need to get back in to see your rheumy. he/she needs to take a look at what is going on with you. It might be somthing new or somthing a different drug besides steroids might fix.
let us know
hugs
carol
 
Possible scleroderma.  stage 4 COPD,  Osteoporosis,osteoarthritis
Prednisone,plaquanil400mg,azythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, spirivia,aciphex,lasix,inderal,pot.chlor.,B12 
 Did you ever know that your my hero?
 
 


sharky456
Regular Member


Date Joined Sep 2008
Total Posts : 30
   Posted 9/19/2008 4:11 PM (GMT -7)   
heartsong-

you should be able to raise your dosage as well. i have been given liberty to reduce my dosage and instructed to go back up if symptoms returned. i would advise calling your doctor to let them know you are having problems but in the meantime to increase the dose to get some relief.

best of luck!
sharky

meowese
Regular Member


Date Joined Jan 2008
Total Posts : 121
   Posted 9/19/2008 4:34 PM (GMT -7)   
I was controlling my prednisone (for Crohn's) and tapered off of it when I was feeling better, but I think it may be good to check in with your doc either way, especially because you're not feeling very well? I hope you feel better.
Crohn's (diagnosed in 2006 and currently in remission), severe migraines, Seborrheic Derm., Hemolytic Uremic Syndrome (1994), chronic pain, ulcers/GERD and possibly Lupus. Medications: Nexium, Pentasa, Percocet and Vicodin as needed, Flintstone Vitamins (my favorite part!), calcium and magnesium supplements, vitamin D once weekly. I follow a low fiber, low residue diet.


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/19/2008 6:53 PM (GMT -7)   
Hi Heartsong,
 
In the first couple of years of being on prednisone you should always consult your rheumy first before making any increases or decreases.  You need time to get to know how your body reacts to the changes.  Once you know how your body responds you'll have confidence in regulating things yourself.  I've been on prednisone for 8 years now and I still ask my rheumy what I should do when I have a flare up that is quite bad.  For little flares I do it myself, but for major ones it's important for your rheumy to know what you're doing and keep an eye on you.
 
Hope this helps!
 
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

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, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


suetoo
Regular Member


Date Joined Jan 2006
Total Posts : 395
   Posted 9/20/2008 5:41 AM (GMT -7)   

Hi! Everyone,

I vote call your dr.'s office first. Slow taper down/off is the rule, but if disease activity is increasing significantly as evidenced by increased symptoms, you might need a BIG increase in dosage. Like right away. My dr. is great, I wish I could share him. He says I am the best judge of how I feel and how much prednisone I need. I just call the "triage' nurse and they are great about phoning in a script.

sue


God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.


Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 9/24/2008 6:23 AM (GMT -7)   
Thanks, everyone.  My dr said "the first thing we need to try is returning to the original prednisone level (15 mg) and see what happens."  He didn't want me to come in yet.  So we'll see....I hope I don't start gaining weight because of this. sad
 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 9/24/2008 8:05 AM (GMT -7)   
Welll, if you can be on that dose for a short time and taper down, you might avoid the weight gain.  Wouldn't that be nice!!  I'm tapering down to 8mg today.  I hope to see a change in my weight too...... SIGH.  We can only wait and see!
 
Good luck!
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, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Bsime
Veteran Member


Date Joined Apr 2006
Total Posts : 1298
   Posted 9/24/2008 8:29 AM (GMT -7)   
Heartsong,
 
15mg of prednisone is a low dose.  If you adjust what and how much you eat you will not gain weight.  Patients do not act and take high doses of prednisone and have reduced activity which is a formula for gaining weight.  I was on 60mg and have been on lower doses for over 3 years and have zero weight gain.  Also have a severe case of polymyositis and lost 40 lbs of muscle mass 3 years ago so had far fewer muscles to burn calories.  Spent over 3 months completely crippled and in hospitals but have been able to maintain my predisease weight now for almost 3 years.
 
Make some adjustments and you will be OK on such a low dose.
 
Others have already given you good advice.  Don't play doctor and change your meds.  Controlling your immune system is not like taking pills to cure an infection.  Some of us will have to take some dosage of controlling meds for life.  Others will be able to taper off but it can take many months or even several years until your immune system stabilizes.  EVery case is different and you must have patience.  Coming off meds too soon is one of the biggest mistakes you can make because you risk having a flare and never find a maintenance dose to control your disease.
 
If you are proactive you can avoid weight gain but be aware of any symptoms you might have and tell your doctor.  If you get the infamous moon face or prednisone belly that will go away when you taper to a lower dose or off the meds.  At 15mg you might not have any problems at all. 
 
Bill
Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Heartsong
Regular Member


Date Joined Feb 2008
Total Posts : 42
   Posted 9/24/2008 9:56 AM (GMT -7)   
Thanks, Bill.  I will be careful.  I'm motivated since I have a college reunion to attend October 24th.  I know that's vain, but I REALLY don't want to show up with moon face.  I think you're right-15 mg shouldn't do that.

 
43 year old female
DX:  Mixed Connective Tissue Disease (lupus, RA, polymyocitis, scleroderma) Jan 08
Meds:  Prednisone 9 mg, Plaquenil 400 mg, Wellbutrin XL 300 mg, Calcium/D 1200 mg, 81 mg aspirin, ibuprofen and Darvocet as needed for pain ( I take it maybe 3x/week) 

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