Rheumatoid Arthritis Support Group
Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...
Long story short, I was told to go from 10mg prednisone, to 5mg when I informed the rheumatologist I wanted to wean. I know it should be down to 7.5, but it is what it is and I want OFF the %##$ drug!
So I did well Friday and so far this morning, though I was told it would be uncomfortable with withdrawals for 7-10 days. I feel surprisingly well.
Here's my question. I KNOW the prednisone was masking pain and inflammation, that my treatment wasnt helping as well as it seemed. Now that I went down to 5 mg, I DO have increased pain and stiffness, especially in my most problematic joints. No camps, tiredness, nausea etc. however.
How do I decipher whether or not the pain and stiffness is a withdrawal OR is my true state? In other words I KNEW the pred was masking my pain, so is this withdrawal I'm experiencing or good ole RA not well controlled by current treatment?
Guess it doesn't matter, I was approved for Enbrel, and am so excited at the prospect of being free, eventually, of all medicine except the Enbrel. I am just wondering if my RA was not well controlled, or if the pain and stiffness is withdrawals.
Thx to all!
So I did well Friday and so far this morning, though I was told it would be uncomfortable with withdrawals for 7-10 days. I feel surprisingly well.
Here's my question. I KNOW the prednisone was masking pain and inflammation, that my treatment wasnt helping as well as it seemed. Now that I went down to 5 mg, I DO have increased pain and stiffness, especially in my most problematic joints. No camps, tiredness, nausea etc. however.
How do I decipher whether or not the pain and stiffness is a withdrawal OR is my true state? In other words I KNEW the pred was masking my pain, so is this withdrawal I'm experiencing or good ole RA not well controlled by current treatment?
Guess it doesn't matter, I was approved for Enbrel, and am so excited at the prospect of being free, eventually, of all medicine except the Enbrel. I am just wondering if my RA was not well controlled, or if the pain and stiffness is withdrawals.
Thx to all!
Withdrawl would I would be shaky, muscle pain, especially in my legs. Over all feeling blah & edginess. Sweats also. Can't remember every sign but I'm sure I will one day soon as I'll be going through it.
Ive heard less chance of this when it's 10mg & below. Maybe I'm wrong. Still best to wean slowly.
Good luck on the Enbrel.
Sammy
any on here?
sometimes I see a doc pop up out of no where... :)
i don't know much except through my mom. But from what I remember your adrenals are not putting out cortisol and now they need to and the slow taper is protect your life and your heart so that the real production of it can kick back in
i'll let the other longer long-term pred takers kick in here
Ros
I understand withdrawals.
The strangest thing is it's been 2 days going from 10-5 and I'm having no withdrawals at all! It's the weirdest thing!
The only thing is the increase in pain and stiffness. So I was wondering if it's RA that was masked by the prednisone, or withdrawal pain.
Sammyo, I am leaning towards Ra too. It isn't muscle aches, but it is my RA joints, especially my worst joints, that have increased in pain.
Thx to all for the input!
I now have an endocrinologist who is trying to wean me off and hoping my adrenal glands start functioning again. I am down to 4 mg and every third day I drop to 3 mg. those days are awful. I stay at this dose for 3 months and then drop to 2 days at 3 mg, 1 day at 4. If I can.
Good luck, I hope you can get off. Don't hesitate to contact your doctor if you feel really awful. Pred withdrawal is no joke.
i think the long terms in terms of adrenal insufficiency are talking 1/2 year to a year and years, not episodic or bridge
how long were you on?
R
I've been on 5mg for a couple of years now. (Started at 7.5.) My endo says that 5mg, even long term, shouldn't cause adrenal problems. That said, he recommended I get a MedicAlert tag saying I take it. I guess If I was hit by the crosstown bus and hauled off unconscious to the hospital, it would be in my best interests for them to know that I'm a pred addict.
Lionprincess, the increase in pain is most likely from inflammation that the pred has been keeping in check. 10mg to 5mg all at once is a steep drop. When I went down from 7.5 my doc had me alternate 7.5 and 6.75daily for a week, stay at 6.75 for a week, alternate 6.75 with 5 for a week, then stay at 5. That worked OK. When Rheumy #2 told me to quit taking everything "to see how I feel" I had a lot of pain just dropping from 5 to 4. Didn't cut it any further, didn't go back to that quack, and my current rheumy told me to just go back to 5 until we can get something else going successfully.
I completely, totally understand your wanting off the stuff, but be careful about doing it too quickly. If you are starting Enbrel, your disease is not well-controlled. They don't give you biologics "just in case" or just to make it look like they are doing something.
I will tell her when I go in for my first enbrel injection that I want to go down further, and want a 2.5 pill script...just in case she tries to tell me I can go from 5 to nothing. If she does that, which I doubt (I'd hope), then I'll take the left over regular pred I have. I have plenty of 5 mg left over to safely and slowly wean me if she isn't ok giving me a smaller dose and only wants me to stop.
She's really a good doc, so I think she won't want a cold turkey from 5.
I no longer have flares on my current treatment, so I'm happy even if I have pain being prednisone free. I'm hoping the enbrel can knock out the remainder pain that lingers constantly.