Wellness

[LilacTree]

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@grandma2pkmh wrote:

@LilacTree  I have been on Prednisone 5mg for my RA for 16 years.  I tried to taper off once, got down to 3 mg a day but the pain started up again so I went back to 5mg. As far as I know, I have not noticed any side effects.

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@grandma2pkmh

5 mgs is my goal. It's amazing that you have had no side effects.  Mine would fill a single spaced 8-1/2x11 page of typing.  I am so happy for you.

[software]

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@LilacTree wrote:

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@software wrote:

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@LilacTree wrote:

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@software wrote:

Hi, @LilacTree, nice to see you posting.

I was diagnosed with Crohns many years ago.

I went through a spell where I couldn't eat without everything just running out of me.   I was losing weight and all the meds the doctors tried just wouldn't work.

The last resort was to go on steroids.

I don't recall exactly but I think the doctor worked me up to 30mg a day for a year and it was the best year of my life.    I had energy, I had no aches or pains, I enjoyed eating and got back up to my normal weight.    After a year, I was weaned off.    I could go back on again if I needed it but I haven't needed steroids since.

People have many different side effects.   I didn't.  I  know the long term side effects, which can be serious, but I would take the risk again tomorrow if I could feel that way again.   Honestly, it saved my life.   

Hope you find the answers you need.

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@software

Sounds as though you were very lucky . . . or perhaps younger than me?  I will be 80 in January and was diagnosed at age 66, thirteen years ago.  We tried everything (except biologics) and I started on pred about two years later (as you said, "last resort").  I started at 10 mgs and have tried titration several times over the years. 

I have only been able to get down to 8 mgs for the last four years . . . when I try to go lower, I get the Mack Truck Effect.  I have many side effects which I won't go into, but they are significant, including one deformed hand and severe spinal osteoporosis.  I am now trying 7 mgs (just started today).  And I have daily pain. 

Are you considered "cured," "in remission," or just at an acceptable pain level?  You don't have answer any of my questions, of course.  Thank you so much.

Thank you for your input.   

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My pain is not acceptable for my diagnosis, but there's not much available.   I have such other serious pressing symptoms, I just work through the pain.   I'm so sorry.  I do hope you find relief, I do understand.

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@software

I know what you mean.  I am much more debilitated by my side effects (which include two more autoimmune diseases, Sjogrens and scleroderma).  My most uncomfortable side effects are my many gastrointestinal issues.  I am working with a nutritionist now and on the Fodmap diet.  I think I'm improving somewhat, but she said it takes a while for the diet to work really well.  I do work through the pain as well, but not to a great extent . . . I have stopped doing many things.

Thank you so much for your response.

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I have a kidney diagnosis and a liver diagnosis in addition to the Crohns.   My doctors would rather I do nothing because if I take something for one organ, it makes another organ unhappy.   It's a vicious circle.  I'm just grateful for any day I can be vertical!  I'll keep you in  my prayers.    

[LilacTree]

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@software wrote:

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@LilacTree wrote:

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@software wrote:

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@LilacTree wrote:

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@software wrote:

Hi, @LilacTree, nice to see you posting.

I was diagnosed with Crohns many years ago.

I went through a spell where I couldn't eat without everything just running out of me.   I was losing weight and all the meds the doctors tried just wouldn't work.

The last resort was to go on steroids.

I don't recall exactly but I think the doctor worked me up to 30mg a day for a year and it was the best year of my life.    I had energy, I had no aches or pains, I enjoyed eating and got back up to my normal weight.    After a year, I was weaned off.    I could go back on again if I needed it but I haven't needed steroids since.

People have many different side effects.   I didn't.  I  know the long term side effects, which can be serious, but I would take the risk again tomorrow if I could feel that way again.   Honestly, it saved my life.   

Hope you find the answers you need.

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@software

Sounds as though you were very lucky . . . or perhaps younger than me?  I will be 80 in January and was diagnosed at age 66, thirteen years ago.  We tried everything (except biologics) and I started on pred about two years later (as you said, "last resort").  I started at 10 mgs and have tried titration several times over the years. 

I have only been able to get down to 8 mgs for the last four years . . . when I try to go lower, I get the Mack Truck Effect.  I have many side effects which I won't go into, but they are significant, including one deformed hand and severe spinal osteoporosis.  I am now trying 7 mgs (just started today).  And I have daily pain. 

Are you considered "cured," "in remission," or just at an acceptable pain level?  You don't have answer any of my questions, of course.  Thank you so much.

Thank you for your input.   

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My pain is not acceptable for my diagnosis, but there's not much available.   I have such other serious pressing symptoms, I just work through the pain.   I'm so sorry.  I do hope you find relief, I do understand.

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@software

I know what you mean.  I am much more debilitated by my side effects (which include two more autoimmune diseases, Sjogrens and scleroderma).  My most uncomfortable side effects are my many gastrointestinal issues.  I am working with a nutritionist now and on the Fodmap diet.  I think I'm improving somewhat, but she said it takes a while for the diet to work really well.  I do work through the pain as well, but not to a great extent . . . I have stopped doing many things.

Thank you so much for your response.

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I have a kidney diagnosis and a liver diagnosis in addition to the Crohns.   My doctors would rather I do nothing because if I take something for one organ, it makes another organ unhappy.   It's a vicious circle.  I'm just grateful for any day I can be vertical!  I'll keep you in  my prayers.    

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@software

So far I do not test as having kidney issues, but my liver is enlarged with many cysts.  So I understand, I take nothing for that either.  I have to accept that the RA has invaded my organs because as you say, more meds is not the answer.  I only take two . . . Synthroid for Hashimoto's, and the prednisone.

Thank you, my thoughts are with you also.  AI is a very frustrating condition, as it affects one's entire body, inside and out.

[phoenixbrd]

@LilacTree  Wouldn't take it....but good news that some of you have not had serious consequences from using pred.

[Vivian]

I have had to take prednisone for a few weeks at a time for asthma. With a history of gastric ulcers, I must be very careful when I have to take that drug. My asthma improves and my arthritic knees always feel better when I take prednisone but the side effects are dangerous.

[gidgetgh]

I’m one of those people who can’t take it at all. A doctor put me on it years ago. For 10 days I think. On day 3 I had reactions to it. She took me off immediately. I’ve never tried it since. 

I also can’t take cortisone shots after I had a major reaction to the 3rd one in my knee. My knee doctor told me to never ever get a cortisone injection again. 

[Lindsays Grandma]

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@LilacTree wrote:

Wondering if anyone here is on prednisone . . . and what for, what amount, how long, and what side effects, if any.  Just looking for personal stories, I have already done significant research.  Thanks to all who answer.

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The only thing I can tell you is that there was a time when my sister's doctor prescribed it for her, can't remember why.  Anyway when she told her son who is a doctor he told her under no circumstances should she take it.  Since you have done the research I'm sure you are aware of the side effects.  Haven't seen you for a long time, good to see you.

[happycat]

I have taken it several times over the years, for severe sinus infections, a crazy rash I had a few years ago that nothing would touch. The steroids cured the rash, but the rash came right back after finishing the course. I have only taken it 10 days at a time, I think.

@LilacTree, I'm sorry you have had so many problems.

[I am still oxox]

I have been on it many times for short courses, I have asthma which at times becomes bronchitis or pneumonia.Usually starting at 60 mg and tapering down or on a medryl dose pack

I get a variety of side effects, it does help, but the mania and the insomnia are no fun

[LilacTree]

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@phoenixbrd wrote:

@LilacTree  Wouldn't take it....but good news that some of you have not had serious consequences from using pred.

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@phoenixbrd

LOL, don't include me in that "some."  I think I'm pretty much done.