Anyone experienced with Prednisone?

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Worthit
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Date Joined Nov 2011
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   Posted 1/17/2013 2:57 PM (GMT -6)   
  I haven't been on HW in a while but I know that this is a good place to find info. I have been going to a Rheumo and was recently Rx Prednisone 2x a day 20mg 2x a week. Ive been diagnosed with "undetermined arthritis?" and also connective tisue dissorder. I have bad knee,hip,back pains and is esp. worse during all this rain been having. The question I have is if this stuff is worth taking with all the long term effects? Osteoporosis,moon face,mood swings. Ive had some nights that I couldnt sleep and a lttle ill tempered.It seems like it would be just as much of a nightmare to go thru? BTW this is my first wk of this stuff and Ive read that its addictive?
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

Lynnwood
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   Posted 1/17/2013 3:12 PM (GMT -6)   
Prednisone is not "addictive" in the traditional sense. However, it works with the natural function of the adrenal glands, and must not be stopped "cold-turkey" -- instead it must be tapered down gradually under the physicians guidance (unless the Dr specifically says to stop) as withholding amounts your body has come to depend on can cause very serious effects (such as heart stoppage!)

I don't quite understand your dosage -- 20 mg twice a day for 2 weeks, is that what you meant? That isn't a long enough course of treatment to cause the long-term effects of osteoporosis and moon face -- it may cause some moodiness, but you'll get that with the pain you are having anyway. Talk with your Dr about an appropriate Calcium supplement.

The main thing the prednisone will do is to "Get The Inflammation Under Control"! It's inflammation that is causing pain. Once the inflammation is under control, usually prednisone is decreased.

I would suggest you follow your Drs recommendation -- uncontrolled inflammation generally gets worse; best to deal with it sooner rather than later.
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

Worthit
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Date Joined Nov 2011
Total Posts : 212
   Posted 1/17/2013 3:34 PM (GMT -6)   
 Thanks for the reply Lynnwood! Sorry about not being a lil more clear about the dosage. Its 2-20mg a day for twice a week "2 doses of 40mg a week." In my case I took the 2- 20mg on Thur. and then again on Mon. and today being Thur. I should take 2 again. Its a weird schedule. I dont think Im really benefiting from it anyway. I've called the Dr.s office and am waiting for the nurse to get back with me. Im  a little bit cautious I guess. 
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

Lynnwood
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Date Joined May 2005
Total Posts : 7720
   Posted 1/17/2013 3:51 PM (GMT -6)   
That is the strangest pred dosage I have ever heard of!!!! And I've been taking and/or reading about people taking pred for over 10 years now. I don't see how such a dosage would help.

I think I'd get a second opinion from another Rheumy!!!
Lynnwood, Lupus & Sjogren's Moderator
DIAGNOSING LUPUS & LUPUS RESOURCES
"Life is far too important to be taken seriously" - Oscar Wilde

couchtater
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Date Joined Jul 2009
Total Posts : 14475
   Posted 1/17/2013 4:03 PM (GMT -6)   
That is an odd perscription. I think I'd find a new doctor too.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Worthit
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Date Joined Nov 2011
Total Posts : 212
   Posted 1/17/2013 8:11 PM (GMT -6)   
Thanks for the responses! I have been told by pcp that the rheumy was good but?... I had 7 vials of blood and urine sent to labs. He said that I tested negative on a few things but he is confident that I still have something "actually 3 diff. cond."going wrong. I was instructed to call today to talk to the nurse to see if any adjustments were needed to be made with the Rx but she never got back with me. I debating on taking them or not tonight. Ive read that this is a bad med but then again I may be just reading only the negatives. Tonights dose will be the 3rd.

Thanks for your time reading!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 1/18/2013 10:14 PM (GMT -6)   
I have a lot of experience with pred. I've been on it daily for almost 12 years now. Yes, I have almost ALL the bad side effects, but that's due to the amount I take daily and the length of time I've been on it.

Prednisone can be a real life saver and I truly mean that. Yes, your prescription sounds odd, the way you are taking it, but really if you have a lot of inflammation, it's worth giving it a chance to help you for a short period of time. I would suggest getting a second opinion about the dosage tho. Mind you I'm NO Dr or medical professional, I'm just offering up my two cents worth.

I hope you feel better soon and best of luck to you.

Hugs,
Barbara

Worthit
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Date Joined Nov 2011
Total Posts : 212
   Posted 1/19/2013 12:27 AM (GMT -6)   
Thanks Barbara! Im wondering if my Dr. is putting me on it as a trial to see how it effects me because he said that my tests came back neg. but he is sure that I have several diff. symptoms. I was told to call back a week later so I did thur. but the nurse never returned my call. I called again Fri. after 12:00 and the office was closed. Either way it didnt help my hip much but my back wasn't wrenched up as bad. Sometimes I feel that I have concrete in my joints and Im turning to stone at times. If that makes any sense?
Thanks for reading!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

SmurfyShadow
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Date Joined Dec 2008
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   Posted 1/19/2013 5:58 AM (GMT -6)   
Wow, that is the craziest dosage. When you are getting off, you need to ween off it.
The moon face and mood swings is a side effect.

I was on it til recently, long term. I gained 100lbs, hotflashes, moon face, mood swings, and it made my pcos worse, which induced cravings. The bright side, since I just got off of it recently, I ended up losing the side effects, and losing 125 lbs. I appreciated the extra 25 lbs off plus all that I gained! Like Joy said, I'd get a new doctor though.. sounds like he don't know what they are doing.
~Moderator - Allergies & Asthma , Alzheimer's~

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Worthit
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Date Joined Nov 2011
Total Posts : 212
   Posted 1/19/2013 8:56 AM (GMT -6)   
  Thanks for the reply SmurfyShadow and Im glad that you lost all the weightand plus! Im calling my PCP Mon. and see what he has to say about this. The bad thing is that I was counting on this so I can get my foot operated on by my orthopedic and extra weight for me wouldnt be good. I have very bad feet which both will need major surgery.
  Thanks for reading!!!

Post Edited (Worthit) : 1/19/2013 8:58:26 AM (GMT-7)


omega
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Date Joined Jan 2007
Total Posts : 607
   Posted 1/24/2013 10:46 AM (GMT -6)   
Same as others' opinion. This is a strange dosage. I would ask for a second opinion as well!!!
DX SLE 1988; APS (Antiphospholipid Syndrome); High-Blood Pressure; Verapmil 40 mg bd (for migraine headaches), Cellcept 2000 mg;Omerprazole 40 mg; Warfarin; Calcium + Vitamin D 1200mg, Folic Acid 5 mg; Simvastin; Candesartan 4 mg

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 1/24/2013 7:31 PM (GMT -6)   
  Thanks Omega for responding! I had asked my Pharmicist and she said that the was a known dosage and also had talked to my PCP's nurse and she said that is was fine too. I'm wondering if its how medicine is practiced here in the south, I am in Alabama! Lol
  BTW this med is making me HYPED UP! My heart is racing in the eve after I take it and the veins in my neck are thumping every time my heart beats! I talked briefly to my Rheoumys nurse and he said it will pass and he 's going to talk to him and also get an appt. scheduled.
 
   turn  I am glad to have the fine people on HW for the help!!! smilewinkgrin
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 1/24/2013 8:37 PM (GMT -6)   
Roll Tide! :))
My niece lives in Alabama and is always yelling it on Facebook to me. I'm a Georgian.
I hope you get adjusted to your medicines soon.
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 1/24/2013 11:32 PM (GMT -6)   
Roll Tide Couchtater!!! Haha I was more worried about playing Georgia than N.D.! If we didn't beat Ga yall would be National Champs!!!
The nurse said they were going to get back with me soon and that I should adjust to the meds. I'm 37yr and had joint problems since teens. There some talk about connective tissue disorder as well. I'm new to this section of HW and I'm popping in and out when I have a chance" been busy" I'll be interacting more!
Go Dawgs!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

ms.niah
New Member


Date Joined Jan 2013
Total Posts : 5
   Posted 1/27/2013 9:35 PM (GMT -6)   
i my opinion prednisone has helped me in may ways but for long term use i say no the osteoperosis it causes in lupus is horrible i had to have a total right hip replacement after being on steroids long term there are other options that can keep ur probles under control, persnally i only take them wen i have flare only for a short time i wouldnt recomend steroids for no other purpose. they work wonders but all things have the good/bad side effects the insomnia and mood swings are rely hard to deal with and its eve harder for your family to deal with the ways this medicine changes your personality

Checkerboard2
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/5/2013 11:14 PM (GMT -6)   
Worthit, my rheumatologist diagnosed me with Sjogren's and prescribed Prednisone twice a week (40mg) each time, as well. He explained that this had been shown to be a regime that showed much less side effects longer term. I had to call his nurse each week for the first couple of weeks to discuss whether I was experiencing any side effects or not. I had even experiencing significant joint pain and after two weeks, I felt much better. I skipped a week and started it again this week. I am to decide for myself each week if I need the prednisone or not. The Doc hopes that we can use the drug to "knock down" the inflammation and then use if to treat flare ups in the future. I can take Advil or meloxicam for pain. Anyway, I thought I'd share my experience with a like dosage.

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 3/6/2013 9:12 PM (GMT -6)   
Thanks for the reply Checkerboard2! I have since given up on the Prednisone and probably my rheumy too! I had such a bad experience/impression from the medicine and the rheumy's nurse that I had asked my PCP if he felt like taking on this problem for me. He had Rx'd me the Meloxicam as well and helps some. The Prednisone didn't do that much for me that I could tell other than headaches,mood,sleep etc. 2wks was enough for me. I hope it does you well though!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

PattyLatty
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Date Joined Mar 2006
Total Posts : 2607
   Posted 3/7/2013 9:16 AM (GMT -6)   
If your doctor tells you that you need prednisone in order to control your illness, then the side effects, no matter what they are, are, in my opinion, worth it. I believe that prednisone helped quiet my lupus, so the interminable nights with no sleep, the broken teeth, and the osteopenia, the moon face and weight gain were worth it. I grant you that life was not easy for a long time, but the quality off my life now is 100 percent better than it was prior to having taken prednisone. And by the way, my mood changes were for the positive, which I think is unusual, but one can hope.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 3/8/2013 8:58 PM (GMT -6)   
Thanks for the reply Pattylatty! I'm frustrated with the rheumy/nurse that I had got to treat me. I was really hoping to have a solid diagnosis and he put me on the prednisone and scheduled me for 3mth later. I m frustrated since called the nurse and told him that I had too many sides.He told me rudely You'll Get Over It! I just wasn't impressed by the online reviews of the Dr. and from the other patients in waiting. My PCP wouldn't recommend him either. I took the med for 3 weeks before reducing/stopping. It didn't really even help and the sides (headache,pounding neck,ill mood,insomnia,anxiety)
I'm now letting my PCP treat me and he's put me on Meloxicam 15 mg . joints are somewhat better but the muscle aches and spasms still the same. I go back the first of next month to get labs and go from there.
Thanks again!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

PattyLatty
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Date Joined Mar 2006
Total Posts : 2607
   Posted 3/9/2013 10:03 AM (GMT -6)   
Jimmy, I'd consider finding a new rheumy and working to develop a positive relationship with her/him. It's a tough road and most of us here relate to your frustration with not getting a diagnosis and not liking your doctor. It takes many people years to get a solid dx and to find a doctor they like and can work with. Hang in there and come here to vent. We understand, we've been there, and we're here for you.
SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

plaquenil, neurontin 1200mg, synthroid, spironolactone, actonel, niaspan, simcor, lunesta, cymbalta 90mg, norco 10, vitamin D, Calcium, Multi Vit. Fish Oil, low strength aspirin

tecman
New Member


Date Joined Mar 2013
Total Posts : 1
   Posted 3/9/2013 12:07 PM (GMT -6)   
I was diagnosed with cutaneous lupus about a year ago. Forst the rash broke out on my shoulders and back and eventually it morphed into a completely different rash that almost sperad over my entire body. The first symptome were not itchy at all but when it changed to the different kind of rash it was very itchy. The fires medication I wa prescribed on was Plaqinil and a topical ointment Chlbetasol. Neither had any affect on the rash. In fact I thought the Plaqinil actually made it worse. Finally my dermy put me on Prednisone, 60mg per day. It stopped the rash for the most part and the itching as well in the first week. After that I started to feel very sick from too much of the medicine. I reduced myself to 40mg when my doctor wouldn't answer my calls. That was milder but in a short time I was feeling sick again. Then 20, and then changed my doctor. Looking at my original biopsy's he was able to determine that I had Tumid Lypus. The prednisone worked great at first but it alsl had many bad side effects. My bp increased for the first time in my life and so did my chlorestorol. I gained about 15 pounds. I'm now down to 15mg per day and it is just enough to slow down, but not totally prevent the rashes and itching. So I would say that being on it for a prolonged period of time is definitely not good for you. I want to get off desparately!

Worthit
Regular Member


Date Joined Nov 2011
Total Posts : 212
   Posted 3/9/2013 9:22 PM (GMT -6)   
Thanks Patty Latty and tecman! Yeah you've hit by saying that I'm frustrated but I don't really fuss about other than here. Thanks for putting up with it tho! The best way I can describe my soreness is like somehow a wrestler had took my muscles off me and wring them like a wet dishcloth and then beat it on a rock and put it back on my back,buttck,shoulder etc.
Tecman I also have some rashes on my legs but not sure if it could be related but worth checking into. been putting lotion on them but I'll show them to my Dr. next visit.
You guys are a big help. Thanks!!!
Alone we can do so little, together we can do so much
Call me Jimmy;-)

Cirrhosis,osteoarthritis,back,knee,hip, extreme flat foot,falling arches, hammertoe,out-toing and bone spurs(will be requiring major foot surgery on both feet). Had kidney tumor removed.Neuropathy- deteriating nerves,Osteomyelitis and Insomnia Hoping to be diagnosed with a good sense of humor ;-)

couchtater
Elite Member


Date Joined Jul 2009
Total Posts : 14475
   Posted 3/9/2013 10:08 PM (GMT -6)   
I just love that feeling of my skin hurts like the flu, Not!
Just lightly touching my arms feels like it did when the flu hit me, Very tender to the touch. Owwww!
Joy
Lupus, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Degenerative Disk and Facet Disease, and Allergies

When life throws you lemons....
Pick them up and throw them right back at them! :))
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