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Substitutions for prednisone??
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HG1948 posted:
Hi, I am maintained on a combination of medications for pain management. Within the past 12 months, I have even undergone outpatient surgical and nonsurgical procedures to help manage specific aspects of the pain in my lumbar spine and in my knees. I also take oxycodone, neurontin, and flexaril. Even with all of this, I have had a very difficult time the past several weeks just walking, sitting, or standing because of stiffness and pain. Today, when my doctor advised me to increase my Prednisone dosage by 4x's my regular daily dose, I learned that it is the prednisone that provides my pain management and not the opiates or other drugs and treatment strategies. I actually began to feel like I'd traded in my old body for a newer one. Today, after taking the larger dose of prednisone, my pain levels dropped to the point that I was able to get into the car and drive to the grocery store. After buying groceries, I was able to come home and cook a wholesome dinner! When I first awoke, I needed a walker to get into the bathroom. Continuing on this level of prednisones is not feisable for me. I am already losing bone density, developing cataracts prematurely, and my lab work is starting to show signs of kidney disease developing. That is why, I can't remain on the level of steroids I took today even though my dosage was just 20mg. We are all different. My daily dosage is 5mg. Are there any of you who have been on prednisone who found a substitute for the benefits that this drug yields that doesn't have the same potential for destroying the body? Thanks for your time, in reading and answering this post. Yours truly, HG
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sleteacher1 responded:
HG, I cannot offer any suggestions for you but I did want to congratulate you on being pain free for such a long time! :grin: :grin: Going to the store alone is no small task for a Lupy but being able to also cook a meal afterwards is simply amazing for you. I know you have been going through a rough time lately and just wanted to say atta girl!! :smile: I'm hoping someone here has the answer you are looking for HG. Hang in there! Teach
 
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HG1948 responded:
Teach, Thank you for the "props". I always can count on you to be right there reminding me of whatever I managed to accomplished. I've observed that you do this for all of us who post messages here. Whenever, any of us describe what we are doing to manage our daily lives, since we became ill, you never fail to encourage everyone of us. Your workplace might have changed but are still teaching and coaching! God bless you. HG
 
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Donna1414143 responded:
Prednisone is a wonder drug...I feel like a million bucks when I take it and it helps so much - how awesome did it feel to go to the store and still have energy to come home and cook-whenever i have something like that happen it reminds me of before i was diagnosed and haveing any symptoms......the problem is exactly what you said - the long term is just not a good thing. I take 4mg daily, which from what I am told anything under 7mg is pretty safe. I have had to take 20 mg also and now my face looks like I am storing nuts for the winter. How long have you been taking the 20 that your density went down and your kidneys are showing signs of disease? I think the last time my Dr was trying to cut out the steroid she tried me on Cellcept, and other forms of that type of med. Unfortunatly nothing helps. I am just getting over being very sick so i am still taking the 20 mg to heal me faster but i am going to be starting methotrexare, now I tried it as a pill and it made my stomach just do somersalts that it was unbearable. But this time i am trying the liquid that I have to inject 1x a week, its similar to an insulin inection as far as how you inject it and the size of the needle. She said with the injectable it may just pass over my stomach....we'll see. I am hoping for that new drug Bliss - spelling is wrong - my Dr has been telling me about it for 8 mths now and I am praying it will get approved and help us all.
 
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kducks responded:
HG, Prednisone is truly a wonder drug for us Lupies. I was on very high doses when I was at my highest flare time. I was up to 60 mg a day at one point. My doctor's didn't want me to be on the pred long term because of my age at the time(19/20)so they started trying different drug combos to help get me off of it. Like Donna, the pill form of methotrexate messed with my tummy, so I had to end up injecting it once a week to take it. That combined with plaquneil helped me eventually get off pred completely. It was a slow painful process, with lowering and re-upping the dosage constantly it felt. I have been off of pred for over ten years now and the only medication I still take is plaquneil. It is possible to find a way off of it sometimes, you just have to be patient and find out what works best for you. Good luck! Hugs, Kim
 
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HG1948 responded:
Donna, I think the problem I developed with bone loss was three fold. I am post menopausal and no longer producing the hormones that help protect women from heart attack, strokes, and bone loss. I ceased taking artifical hormones in my 50's. The other problem is that my lab test show that I've begun to experience lupus nephritis. The third problem is the prednisone. My rheumatologist said that the prednisone was the catalyst for all three problems. In her words, it actually "speeded up" my aging! :chagrin: I've just begun the methotrexate about 4 weeks ago. My doctor told me that it wouldn't take effect for at least 6 months. I honestly believe that I feel better because of it. The doctor told me that she has had many patient's tell her that the were feeling better after just a few weeks. She is still uncertain if the disease process has improved or if it is the placbo effect. My attitude is if it is it doesn't matter. The physical follows the mental and vice versa. If you maintain and expectancy for improving daily, it happens. If you feel bad physically, and you meditate on getting worse, it will happen. Take care. HG
 
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marilynk2 responded:
HG, We both are having such awful back troubles and I think I might be having side effects from the steroid injections as now my glucose levels are higher then they ever have. I leave for Texas on Wednesday so I am having the glucose rechecked as soon as I return in 3 weeks. I am just so depressed from the pain and the real fear of not being able to continue living in my house as it is too big and the yard takes too much care. I also am losing my doctor as he is moving to the Atlanta area. Since my daughters don't seem to get it and help me out like I really could use to maintain, I have really thought about moving to where he will have his own practice. The weather is more to my liking physically although I will miss the snow. But now, it is a hinders my living. I am just so upset because this pain just is ruining my life. Seeing what has happened to my Mom makes it all only too real. She is 86 and she has long term care insurance so avoided a nursing home and is in an assisted care facility. I am alone and so afraid of what the future holds for me. The last injections last week did not help the pain at all! Sitting here is so painful. Walking is so painful. Cooking a meal is painful. Shopping is painful. Need I say more. You know the drill. I am thrilled for you that you experienced a pain free day on the prednisone. But, I, like you am quite aware of the immense dangers of long term use. My doc did say my kidneys are still testing OK so that is a positive. that is why I like him as he always finds a positive amongst all the crap that is happening. ((((((((((((((((((((((((((((((((((((((((((HUGS)))))))))))))))))))))))))))))))) Marilyn
 
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renalupie1 responded:
Well, I know of no substitute for pred. I do hope the metho helps, as that helped me kick down on the steroids tremendously. It also clears through the liver, so that can help the kidneys a bit. Are they having you take calcium supplements at all? I know when the kidneys start to fail, they leach calcium from your bones. All that PTH, adrenal, kidney crap I have gladly started to forget! Mom took two tums a day to help with that prior to dialysis, and some big horse pill after starting dialysis. Sorry, can't remember names, we had a regular pharmacy running at the house. LOL. Keep the calcium intake up, keep the phosphorous and protein intake low. Don't make those kidneys work any harder than they have to! Rena
 
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K2isKsquared responded:
Methotrexate worked for me much quicker than Plaquinel did. I think after 2 - 3 doses of Mtx, certainly after one month, I was thinking there was some definite improvement going on. They started me out on 5 Mtx per week which I think is 12.5 mg. Over the course of about a year or so I worked up to 8 pills per week or 20 mg per week. That was when I really started feeling good :-) I was able to punt the Pred due to my great response to Mtx and Plaq. I don't think many other people here have done quite that well on it. At any rate, I'm voting that you're seeing improvement from the Mtx, I don't think it was placebo because I know we could see discernable improvement everytime we stepped me up on this med -- and we didn't wait 6 months at a time for my increase in dosage. Most patients take folic acid daily with Mtx to combat some of the side effects. If you aren't already on it, your doc may add the Folic Acid at one of your upcoming visits. It helps lessen the frequency of the mouth sores, and it can help keep your white cell count up. Good Luck! K2


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