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Coming off prednisone. It's horrible being on it, and it's horrible coming off it. Even taking it down slowly.
I am all swollen, have even more difficulty sleeping than usual, have mouth ulcers and so forth. BUT..my back and leg pain were better while on it, and the pain is coming back big time. I KNOW vicoden constipates me, and the C is almost as bad as the D, but I am NOT taking more! I always take one less dose than prescribed if I can.
Pain or not I can't wait to be done with it. Never again!
I can't WAIT till I get the eterolab tests to do and find out exactly what my food sensitivities are. Then, maybe, I can REALLY work on healing.
Been through this before, and Tex warned me..
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Sorry, Lesley, I hope it all gets better soon. EnteroLab information should be helpful for you.
You can eliminate gluten before you do the EL tests. I found the PP on a Friday and by Monday I was GF. I had pretty fast success for a month or two. I figured because of the experience of the PP, that soy was the culprit. Another EL test confirmed it.
You can eliminate gluten before you do the EL tests. I found the PP on a Friday and by Monday I was GF. I had pretty fast success for a month or two. I figured because of the experience of the PP, that soy was the culprit. Another EL test confirmed it.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Lesley,
I'm sorry to hear that the withdrawal symptoms are so rough. Prednisone can do wonders, sometimes, but it can be mighty cruel, when it doesn't want to release you from it's grasp. I wish I knew of a way to make it easier.
Be sure to wait until the prednisone is out of your system, before you take a stool sample to send to Enterolab, because your antibody production will be suppressed by the prednisone. Your immune system should recover fairly quickly after you finish the withdrawal process, though, because the half life of prednisone in the bloodstream is only about 4 hours.
Best of luck to you. I have no idea where you are in the withdrawal regimen, but it can take a loooooooooooonnnnnnnnng time to wean off, if you've been on it long enough.
Tex
I'm sorry to hear that the withdrawal symptoms are so rough. Prednisone can do wonders, sometimes, but it can be mighty cruel, when it doesn't want to release you from it's grasp. I wish I knew of a way to make it easier.
Be sure to wait until the prednisone is out of your system, before you take a stool sample to send to Enterolab, because your antibody production will be suppressed by the prednisone. Your immune system should recover fairly quickly after you finish the withdrawal process, though, because the half life of prednisone in the bloodstream is only about 4 hours.
Best of luck to you. I have no idea where you are in the withdrawal regimen, but it can take a loooooooooooonnnnnnnnng time to wean off, if you've been on it long enough.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
That may not work for someone on prednisone, (depending on how long the drug has been used), because once prednisone has suppressed the immune system, antibody levels will start to decay, so if gluten is no longer ingested, there would be no reason for the antibody level to recover, after the prednisone is discontinued.Joan wrote:You can eliminate gluten before you do the EL tests.
I'm not absolutely positive that will be the case in this situation, because these are uncharted waters, and as I mentioned, the effect will depend on how long the drug has been "in control", but there's certainly a reasonable possibility that this might have a significant effect on antibody levels, if it has been used long enough.
Basically, it depends on how long prednisone has been used after it was able to significantly suppress the immune system. If the starting antibody level was extremely high, it can take a year or two for the antibody level to decay to a "normal" level. If the starting antibody level was only moderate, though, it can decay significantly in a matter of months.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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MaggieRedwings
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Morning Lesley,
I will echo the other sentiments posted here and wish you luck weaning off the Prednisone. I remember when the founder of the board, Sally - may she RIP - was trying to wean off of it. It was a real trial for her. I have my own name for Pred and call it DD - the devil's drug. Great drug for the effects but terrible to get off of. Best of luck to you and you are in my prayers.
Love, Maggie
I will echo the other sentiments posted here and wish you luck weaning off the Prednisone. I remember when the founder of the board, Sally - may she RIP - was trying to wean off of it. It was a real trial for her. I have my own name for Pred and call it DD - the devil's drug. Great drug for the effects but terrible to get off of. Best of luck to you and you are in my prayers.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
Lesley,
Here is the experience of Sally, our founder, from another forum on this website:
"Polly asked me to elaborate a little on the troubles I had with prednisone withdrawal so here it is.
The first symtom of pred withdrawal was when I tried to reduce my dosage and got to 16 mgs/day, The D returned in full force. Awful. Then my doc would up my dosage again and everything would be fine for a while until I got to 16 mgs/day again. In order to keep me out of the bathroom 24/7 I kept on the pred until Entocort was released in this country. FINALLY.
I started Entocort immediately (9 mgs/day) and started the long slow process of weaning myself off pred. The rate was about 1 mg/every two weeks. I was taking it REALLY slow because I had been on it for over three years at an average dosage of 20 mgs/day. I wanted to give my adrenal glands time to "wake up." When you take pred for any length of time they tend to get lazy.
It was a great day when I finally passed the 16 mgs/day point. I did not have any D so I went on decreasing.
When I got to 5 mgs/day, the symptoms of withdrawal began. Severe pain in all my joints, but especially on the tops of my feet. That was almost unbearable and there was nothing I could do for it. I asked others who had been on pred for a long time and who had kicked it about their symptoms and they all agreed that the pain on the feet was the worst. My doc was no help because she had never run into this in her practice.
This went on for about a month and then the pain started to decrease. The fact that I kept going through this is a testament to how badly I wanted to kick pred. I finally ended up going to a support group for people who were trying to kick heroin, meth, crack, etc. They were very helpful to me and had also, some of them, been through the prednisone thing.
So prednisone withdrawl is very real, but don't expect much help from your doc. This is not for people who have been on it temporarily, by the way. It is only for us hard core users who have been on it for years. Be prepared.
Lots of love,
Sally"
Best wishes on your struggle to stop pred. Please keep us posted.
Hugs,
Polly
Here is the experience of Sally, our founder, from another forum on this website:
"Polly asked me to elaborate a little on the troubles I had with prednisone withdrawal so here it is.
The first symtom of pred withdrawal was when I tried to reduce my dosage and got to 16 mgs/day, The D returned in full force. Awful. Then my doc would up my dosage again and everything would be fine for a while until I got to 16 mgs/day again. In order to keep me out of the bathroom 24/7 I kept on the pred until Entocort was released in this country. FINALLY.
I started Entocort immediately (9 mgs/day) and started the long slow process of weaning myself off pred. The rate was about 1 mg/every two weeks. I was taking it REALLY slow because I had been on it for over three years at an average dosage of 20 mgs/day. I wanted to give my adrenal glands time to "wake up." When you take pred for any length of time they tend to get lazy.
It was a great day when I finally passed the 16 mgs/day point. I did not have any D so I went on decreasing.
When I got to 5 mgs/day, the symptoms of withdrawal began. Severe pain in all my joints, but especially on the tops of my feet. That was almost unbearable and there was nothing I could do for it. I asked others who had been on pred for a long time and who had kicked it about their symptoms and they all agreed that the pain on the feet was the worst. My doc was no help because she had never run into this in her practice.
This went on for about a month and then the pain started to decrease. The fact that I kept going through this is a testament to how badly I wanted to kick pred. I finally ended up going to a support group for people who were trying to kick heroin, meth, crack, etc. They were very helpful to me and had also, some of them, been through the prednisone thing.
So prednisone withdrawl is very real, but don't expect much help from your doc. This is not for people who have been on it temporarily, by the way. It is only for us hard core users who have been on it for years. Be prepared.
Lots of love,
Sally"
Best wishes on your struggle to stop pred. Please keep us posted.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Been through this before, and Tex warned me..
Last time it was 60 mgs a day for 6 months and it was HORRIBLE getting off it.
This time it was 40 mgs, and for 2 months. Coming off one pill a week. Two more to go. Meantime from having lost a lot of weight I have puffed up big time. And the pain is horrible. BUT I am coming off it, then the labs, then we'll see.
I hate prednisone. I lost a lot of weight initially with the D, but now, on the steroids I have swollen as though someone had pumped me up withe a bike pump.
My other problem is a sugar addiction. I am trying to break it, but the weaker and more exhausted I feel the less I can resist, and the more I don't the more exhausted I fee. Vicious cycle, I know. Figuring this out is taking time. And patience. One of these days I will get on top of it all.
This time it was 40 mgs, and for 2 months. Coming off one pill a week. Two more to go. Meantime from having lost a lot of weight I have puffed up big time. And the pain is horrible. BUT I am coming off it, then the labs, then we'll see.
I hate prednisone. I lost a lot of weight initially with the D, but now, on the steroids I have swollen as though someone had pumped me up withe a bike pump.
My other problem is a sugar addiction. I am trying to break it, but the weaker and more exhausted I feel the less I can resist, and the more I don't the more exhausted I fee. Vicious cycle, I know. Figuring this out is taking time. And patience. One of these days I will get on top of it all.
Lesley,
Someone told me a long time ago that sugar cravings can be worse when you don't eat enough protein... and so eating something like a hard-boiled egg (if you can eat eggs...) or some turkey breast or - your favorite easy protein snack can sometimes help. I try to have some kind of meat leftovers, or something I can prepare quickly. We make what I call "meat cupcakes" in muffin tins, which is basically a small portion of meatloaf - they're tasty and healthful and I think it really does help with carb cravings in general. I'm eating a pretty low-carb routine these days, and have very little craving for sugar/sweetness.
Best of luck as you wean off the pred,
Sara
Someone told me a long time ago that sugar cravings can be worse when you don't eat enough protein... and so eating something like a hard-boiled egg (if you can eat eggs...) or some turkey breast or - your favorite easy protein snack can sometimes help. I try to have some kind of meat leftovers, or something I can prepare quickly. We make what I call "meat cupcakes" in muffin tins, which is basically a small portion of meatloaf - they're tasty and healthful and I think it really does help with carb cravings in general. I'm eating a pretty low-carb routine these days, and have very little craving for sugar/sweetness.
Best of luck as you wean off the pred,
Sara
Lesley,
So sorry you're going through a very rough time, but your attitude sounds great, so I'm sure you'll emerge victorious!!!
Because of candida and nail fungus, I have stopped all sugar, and am feeling much better. Like Sara, I have found that eating lots of protein is very helpful and decreases the sugar craving. I'm fine with fructose, so to make up for the lack of sugar, I eat boiled apples and pears with cinnamon.
Breakfast has been the most difficult meal for me to "convert", but I'm now at a point where breakfast resembles a "normal" dinner meal. Doing this has helped me enormously with my energy level. "Dinner for breakfast" sustains me for many hours, and I avoid the horrible sugar crash I used to experience.
Can't say I will always eat like this, but for now it does the trick. Lots of luck to you as you continue weaning off pred and sugar.
Love,
Kari
So sorry you're going through a very rough time, but your attitude sounds great, so I'm sure you'll emerge victorious!!!
Because of candida and nail fungus, I have stopped all sugar, and am feeling much better. Like Sara, I have found that eating lots of protein is very helpful and decreases the sugar craving. I'm fine with fructose, so to make up for the lack of sugar, I eat boiled apples and pears with cinnamon.
Breakfast has been the most difficult meal for me to "convert", but I'm now at a point where breakfast resembles a "normal" dinner meal. Doing this has helped me enormously with my energy level. "Dinner for breakfast" sustains me for many hours, and I avoid the horrible sugar crash I used to experience.
Can't say I will always eat like this, but for now it does the trick. Lots of luck to you as you continue weaning off pred and sugar.
Love,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Thank you for all your help guys. On Monday I drop another pill, and then it's only ONE MORE and I am off.
Last time it was bad also. I couldn't sit upright for 2 minutes at a time.
This time the body pain and weakness all over is worse.
My doc has actually been very supportive and helpful. He made a not to himself to call me a week after I finish the prednisone to see how I am doing, and work out the next steps.
I thank you for your advice about the sugar. Duly noted, and I will try to incorporate it into my diet. I am eating more protein than I used to.
I am an D+C sufferer. As I have cut out gluten and casein from my diet already and have been on prednisone for a couple of months, how long should I wait before doing the enterolab tests? It's very expensive, so I do NOT want to waste them.
And I am confused. Should I eat gluten and casein before I do the tests to raise their levels in my stool?
Last time it was bad also. I couldn't sit upright for 2 minutes at a time.
This time the body pain and weakness all over is worse.
My doc has actually been very supportive and helpful. He made a not to himself to call me a week after I finish the prednisone to see how I am doing, and work out the next steps.
I thank you for your advice about the sugar. Duly noted, and I will try to incorporate it into my diet. I am eating more protein than I used to.
I am an D+C sufferer. As I have cut out gluten and casein from my diet already and have been on prednisone for a couple of months, how long should I wait before doing the enterolab tests? It's very expensive, so I do NOT want to waste them.
And I am confused. Should I eat gluten and casein before I do the tests to raise their levels in my stool?
Gluten antibodies have a relatively long half-life, as I mentioned, so IMO, if you have only been on the prednisone for a couple of months, and you can complete weaning off it within a couple of more months, or so, your gluten antibodies will probably still be numerous enough for a positive test result, for several months after you finish withdrawing from the prednisone. Your casein antibodies will probably be gone, though, so you will need to eat dairy products for at least a couple of weeks or so, (after you finish the pred withdrawal), to make sure that you have a level of antibodies that can be detected by the tests. I honestly don't know whether it might be necessary for you to eat some gluten then, for a few weeks, or not. My gut feeling is that you will still have a residual level high enough for a positive test result, but as I said, these are uncharted waters, and no one really knows what your antibody status might be, at that point.
The problem with starting to eat it again, to make sure that the test will be valid, is that doing so will probably make you very sick, and that's no fun, either.
Tex
The problem with starting to eat it again, to make sure that the test will be valid, is that doing so will probably make you very sick, and that's no fun, either.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Been through this before, and Tex warned me
I will be finished with it in about 10 days.
I think I will call the lab and ask them if and how long I need to eat the stuff again before doing the tests. I am in SO much pain just coming off the steroids the thought of more pain, suffering and sickness doesn't thrill be one bit.
Still, I guess if I want to find out my sensitivities I have to go through it.
After that I will have to go through a lot of withdrawal pain while ditching all the other drugs they have me on. This is going to be a LONG and painful road.
I think I will call the lab and ask them if and how long I need to eat the stuff again before doing the tests. I am in SO much pain just coming off the steroids the thought of more pain, suffering and sickness doesn't thrill be one bit.
Still, I guess if I want to find out my sensitivities I have to go through it.
After that I will have to go through a lot of withdrawal pain while ditching all the other drugs they have me on. This is going to be a LONG and painful road.
That might be the safest plan. Surely they've had a client or two in the same situation, before. The folks who work at Enterolab seem to know their stuff.
Tex
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.