I have Discoid Lupus and was told I have SLE as well... I've been on plaquenil for a while but really felt like it wasn't doing anything for me.. I've lost so much weight and my hair is falling out like crazy in the back.. I was told by others that they were on Prednisone and it helped them a lot. They said they felt better, gained their weight back and stop losing so much hair. I wanted to know which doc would have to prescribe this to me and how do I go about asking to try it out. Right now my dermatologist prescribes my Plaquenel, so should I ask her tomorrow when I go for my appointment?
Prednisone is a very sharp double edged sword that you would do well to avoid for as long as possible. Look up Prednisone side effects and have a meaningful discussion with your Rheumatologist.
Hello. I've been on prednisone for about 10 months . It is very helpful, but it's not supposed to be used long-term from what I understand . For a while I was on 5 mg but I started to have lung pain , pulmonary issues and headaches . My rheumatologist up to the prednisone to 15 mg a day. Which help some but I'm still experiencing lots of lung pain. I guess it affects different people different ways. It is very helpful for skin breakouts. In my case. But hasn't done much for my lungs
My personal experience has been a positive for sjrogren's syndrome, fibromyalgia (no test for that) and Lupus in question (has been for years). I take plaquenel and I think this has what has kept the Lupus from getting worse. Who knows with these auto-immune disease's. I have been given the permission by my rheumatologist to be on 7.5 mg. of predisone because it keeps me from painful flares as often (every week). He said I couldn't stay on it forever, but it sure gives me back a quality of life!! As Lupus Husband said, it is a 2 edge sword. I am praying that the Good Lord will save me from the side effects. All we can do is take one day at a time and pray. God Bless You.
Well for your SLE you should be seeing a rhuematologist. And regarding prednisone i would keep researching it becuase in my case prolonged and high doses of prednisone has caused me to develop osteoporosis and a spine fracture.
Stay away from prednisone if you can. Yes it works great but the side effects especially long term are horrible. Plaquenil wasn't strong enough for me either so they gave me Chloroquine. It is another option. Prednisone works though if you have to have it.
My doctor put me on a 3 month tapering dose of prednisone. She doesn;t like to use it long term because of the long term effects of taking it. Any doctor can prescribe it but it is better to let your mane doctor that treats your discoid and sle prescribe it. Make sure to read all the benifits and side effects before seeing your doctor.
My wife has been on an average of 15mg/day for more than 20 years. She didn’t have a choice. It has contributed to the decline of every part of her body from the fungus that she can’t get rid of on her toes and her cracked heels to the Cushingoid appearance of her face including her mind and emotions. The gradual decline hAs been heartbreaking to witness. I believe that her attempt to tAper off of it, aggravated her lupus in a presentation of vasculitis, and has resulted in the onset of vascular dementia with paranoia of me in her early 40s. It is hard to tell where her lupus ends and her Prednisone damage begins. I believe that she technically now qualifies as having a drug addiction to Prednisone because she knows that it is continuing to damage her organs including her neurological function and yet she is unable to stop using it.
Addiction to prednisone is a loose term. It happens, but not like narcotics. Use of prednisone can shut down the adrenal glands (they produce the hormone cortisol). Without getting too technical, the adrenals don't function and the body has to have the hormone. Voila prednisone. Tapering at that high a dose seems mute.
I've been on 5 mg per day for 15 years and I can't taper, I get sick--especially infections. With this low dose I have had most of the serious side effects: osteoporosis, compression fracture of the lower spine, thinning skin, loss of head hair, extra hair on the forearms and lower legs, cataracts, hypersensitivity to the sun. However, prednisone is keeping me alive. I am in a constant flare controlled by medication. We are all different.
Is your wife being seen and followed by a rheumatologist? Plus there are neurological elements to lupus, ranging from mild to severe. It may not all be due to the prednisone.
My 50 cents
Lupus Husband said:
My wife has been on an average of 15mg/day for more than 20 years. She didn't have a choice. It has contributed to the decline of every part of her body from the fungus that she can't get rid of on her toes and her cracked heels to the Cushingoid appearance of her face including her mind and emotions. The gradual decline hAs been heartbreaking to witness. I believe that her attempt to tAper off of it, aggravated her lupus in a presentation of vasculitis, and has resulted in the onset of vascular dementia with paranoia of me in her early 40s. It is hard to tell where her lupus ends and her Prednisone damage begins. I believe that she technically now qualifies as having a drug addiction to Prednisone because she knows that it is continuing to damage her organs including her neurological function and yet she is unable to stop using it.
Usagurl, I agree with everything that you wrote. The body will typically make the equivalent of about 5mg/day, and does shut down production when the synthetic form is introduced. 15mg/day over 20 years is significantly above that level and unless in states of extreme stress, the body will not make that much on its own. I believe that my wife suffers from both the neurocognitive effects of her lupus and her Prednisone usage and that there is no longer the ideal dosage that balances and minimizes the effects. I did not begin to realize where one set of effects ended and the others began until I carefully observed her behaviors and symptoms during a two year taper and subsequent increase resulting from my walking into her Rheumatologists office, dropping a timeline of unusual behaviors on his desk and leaving to keep him out of trouble with HIPAA. I learned of my his response in the divorce papers that I was served with in combination with her reduction in the pattern of her unusual behaviors. She had pushed hard for the divorce for a year, and no longer resembles the woman that I fell in love with and married knowing that she had lupus and what it was. I wish that I could quietly leave her to the little peace that she feels that she can have without me, but our children are involved. Lupus really is a family disease.
USAGURL said:
Addiction to prednisone is a loose term. It happens, but not like narcotics. Use of prednisone can shut down the adrenal glands (they produce the hormone cortisol). Without getting too technical, the adrenals don’t function and the body has to have the hormone. Voila prednisone. Tapering at that high a dose seems mute.
I’ve been on 5 mg per day for 15 years and I can’t taper, I get sick–especially infections. With this low dose I have had most of the serious side effects: osteoporosis, compression fracture of the lower spine, thinning skin, loss of head hair, extra hair on the forearms and lower legs, cataracts, hypersensitivity to the sun. However, prednisone is keeping me alive. I am in a constant flare controlled by medication. We are all different.
Is your wife being seen and followed by a rheumatologist? Plus there are neurological elements to lupus, ranging from mild to severe. It may not all be due to the prednisone.
My 50 cents
Lupus Husband said:
My wife has been on an average of 15mg/day for more than 20 years. She didn’t have a choice. It has contributed to the decline of every part of her body from the fungus that she can’t get rid of on her toes and her cracked heels to the Cushingoid appearance of her face including her mind and emotions. The gradual decline hAs been heartbreaking to witness. I believe that her attempt to tAper off of it, aggravated her lupus in a presentation of vasculitis, and has resulted in the onset of vascular dementia with paranoia of me in her early 40s. It is hard to tell where her lupus ends and her Prednisone damage begins. I believe that she technically now qualifies as having a drug addiction to Prednisone because she knows that it is continuing to damage her organs including her neurological function and yet she is unable to stop using it.