Wellness

[LilacTree]

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.

[software]

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.

[grandma2pkmh]

@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.

[Justice4all]

@LilacTree

we missed you!

[ccassaday]

I had my sugar sky rocket. I wanted to eat all the time and was never tired. I think I was only taking a 10 mg tabelet at night. Yes they made me feel good but the rheumstogist I am seeing has never suggested I go back on them. Even tough the two biologics I have tried haven't gotten my inflammation number down. The stelara did clear up my psoriasis quickly.

[LilacTree]

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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.

---

@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.   

[LilacTree]

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@ccassaday wrote:

I had my sugar sky rocket. I wanted to eat all the time and was never tired. I think I was only taking a 10 mg tabelet at night. Yes they made me feel good but the rheumstogist I am seeing has never suggested I go back on them. Even tough the two biologics I have tried haven't gotten my inflammation number down. The stelara did clear up my psoriasis quickly.

---

@ccassaday

I don't have psoriatic arthritis, I have rheumatoid.  I will bring up the idea of stelara though.  I'm glad you have been cured.  Thank you for your story.

[software]

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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.

---

@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.   

---

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.

[LilacTree]

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@Justice4all wrote:

@LilacTree

we missed you!

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@Justice4all

I missed you too!!

[LilacTree]

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@software wrote:

---

@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.

---

@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.   

---

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.