Prednisone blues

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python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 3/11/2008 1:49 PM (GMT -7)   
Hi everyone
I have been on prednisone for 8 years now and have tapered dosage down to 10 mg-several times. My rheumy tells me when I have a flare (usually heralded by a hard chill and fever) to increase my prednisone to 20 mg for 2 weeks, then taper by 5 mg every 2 weeks til I'm back to 10mg. The problem is, every time i get back to 10 the problems start-low grade fever, fatigue, and eventually the hard chill and high fever. I know she would like to get me to a lower dosage, but it looks like that's just not gonna happen. My hubby is real understanding about my illness, he kept me alive and took care of me when I first got sick before I was diagnosed-but he does have a hard time sometimes understanding just how bad I do feel. He doesn't give me flack about having to take it easy, in fact he fusses if I overdo but still I don't always tell him when I am really feeling bad cause it worries him and he hovers...which adds to my stress levels. The thing with the prednisone worries me tho, because I have heard of damage to the body(?) from long term usage. So far my bone density scans are good, but is there anything else I should be concerned about?
SLE, Lupoid arthritis, Mixed Connective Tissue Disease, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion, Irregular heartbeat
 
Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Vicodin.


Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 3/11/2008 6:21 PM (GMT -7)   
Hi Python:

I've been on prednisone for 7 years. Sometimes at very high doses. My rheumy would be overjoyed if I could get down to 4mg of medrol every other day, that of course will never happen. You're concern about taking prednisone is a valid one. I've got a huge moon face, hump on my back, huge large purple thinning stretch marks, cataracts in both eye, difficulty walking up steps, an huge round torso, skinny at heck in the rear end and legs.

I'd say having your regular bone density test yearly and watching for cataracts are important tests to have done. Sometimes we've got to accept the side effects from the prednisone to be able to enjoy life. Try to watch your diet, and get some exercise if possible. Make sure you write down any new symptoms for your rheumy to know. Also, watching yourself for high sugar levels, and high blood pressure are important too.

Hope this helps some, and I wish you well.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


applesk82
Regular Member


Date Joined Oct 2003
Total Posts : 262
   Posted 3/12/2008 3:54 PM (GMT -7)   
hi Python,

I've been on Prednisone going on 13 yrs in May, as high as 80mg to as low as 5mg every other day. My new maintance dose is 5 mg everyday, after my kidney transplant the docs said that i would not likely ever go back to 5mg every other day. With me i only have the side effects if i am at 15mg or higher (moonface, backhump, huge appetite, and others) the stretch marks are permanant and i do have a cataracts in my left eye but it doesnt bother my vision. The worst effect from the long term prednisone is the avascular necrosis in my hips, knees, and ankles. the docs think it has something to do with prednisone causing some sort of blockage in the smaller blood vessels that supplied my lower joints which cause them not to receive blood and eventually just die off. atleast that's what they think. But the good news is that it doesnt happen to everyone who has lupus and takes prednisone, the bad news is that it happened to me :( i take calcium supplements because my last bone scan showed some osteopenia so the docs wanted to head it off at the pass, and hopefully i will not loose anymore bone density.
Barbara's advice is really good, exercise when you can and eat as healthy as possible. good luck and take care.
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


python
Regular Member


Date Joined Apr 2003
Total Posts : 104
   Posted 3/13/2008 9:48 AM (GMT -7)   
Barbara, Suzanne..... Thanks for the replies. I try to eat healthy, but I do treat myself from time to time devil . I've never had problems with my blood pressure, I'm only on the procardia to boost my circulation after losing the tip of a finger. The only problem I have with trying to get some exercise is the irregular heartbeat-- I can walk across my yard and my heart will start pounding like it's going to burst it's way out of my chest and I get out of breath. I have to sit down and be still for a few minutes til it regulates.My card put me on toprol (25mg at bedtime) but said they couldn't control it completely, just try to lessen the frequency of the palpitations...she also said I could double up on it if I tolerated it well, but I haven't done that yet.
   ((((((HUGS)))))) to all
Donna
SLE, Lupoid arthritis, Mixed Connective Tissue Disease, Scleraderma, Polymyocitis, Reynaud's, Hypo-Thyroidism, Pericardial Effusion, Irregular heartbeat
 
Prednisone, Procardia XL, Methotrexate, Reglan, Lasix, Nexium, Potassium, Folic Acid, Synthroid, Cellcept, Toprol, 81mg Aspirin, Vitamin D, Vitamin C, Multivitamin, Extra Strength Tylenol, Vicodin.


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 3/13/2008 2:04 PM (GMT -7)   
You might try using a heart rate monitor (like runners use) to see if your heart is really racing as much as you think. I know sometimes it feels like my heart is racing, but if I check it I am often way off base! Go figure!

It will come with instructions as to how high you should allow it to go (to strengthen it) before resting.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum

Dx Lupus since '00, new Dr wants to Dx Fibro instead....
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


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