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Trying to come off prednisone again

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Posted 3/19/2013 3:12 PM (GMT 0)
well once again I am trying to come off of the prednisone.   ouch this is not easy.  I hurt so bad last night. Who would have ever thought such a small dose and small pill could pack such a punch.   My rheumy agreed to let me try once again.  I have tried several times before and had to go right back on it.   I want so desperately to come off but is it worth it?   Has anyone else been going through this and if so how long does the pain last?  I just want to be sure I can endure this.  My daughter says why bother with the remedy that is working but I know that prednisone while a good medication can be very bad for you as well.   Any thoughts from any of you on this? 

Thanks for any input.

Peggy rolleyes

Posted 3/19/2013 5:46 PM (GMT 0)
Hey Peggy,

Keep up the good work!

My taper down from 40 mgs. a day took 1 1/2 years.

The lower you go on the dose the harder the taper my doctor told me. The ratio of medication makes it more difficult to adjust is what he said.

It's been awhile...but I think I can remeber feeling increased pain for 2 to 4 weeks after a 1 mg. drop.  I would not drop again until it stabilized. So it was a lonnnnnnggggg process but I was so happy to get off of it and be able to lose some weight, get my muscle tone back etc...

I hope I never have to go on it again. BUT if I become in the position I was when I had to start it- I would do it in a heart beat- it sure was a saving grace at the time.

BTW- I wouldn't call myself pain free but the trade off is worth it to me.

I wish you all the best!

Posted 3/19/2013 6:15 PM (GMT 0)
Great to hear weary... It is hard tapering off but thanks for letting me know how long it has taken you. I too am like you in the fact that if I have to go back on it to keep the pain down from the way it used to be I certainly will. The way it is right now its hard but not unbearable...lol I can tough it out longer I do believe... I am glad to know that it was 2 to 4 weeks as it has only been 1 week for me at this point. Weight gain is a problem for me and I certainly want to get weight off again. I do not have the energy to get busy right now but hopefully it will return again soon. Thanks so much for your input.
I wish you all the best as well.
Peggy
Posted 3/20/2013 3:12 AM (GMT 0)
Since I had the Rituxan infusion I am trying to get off the predisone. I am down to 7mg this week and I am hurting but determined to do it.

It is amazing what one little pill can do . While I hate being on it, I too would go back up n the dose if things went back to how I first was.
Posted 3/20/2013 8:10 PM (GMT 0)
do this slowly, that is the trick, you can do this you are right on in wanting to get off this medicines but do so slowly stay at the 7mgs for a week at least or two, you will get there...My doctor has prescribed 1mg pills for me but I have to use it with Zantac added or it hurts my stomach...
Many well wishes and good luck and good on your goals, way to go, but do this slowly...
Posted 3/20/2013 9:50 PM (GMT 0)
Thanks so much for the encouragement. I have had an awful day today. Didn't sleep last night then had to get up for work at 6:00 this morning. Ended up leaving work at 10:00. Came home and slept hard for 3.5 hours. Just exhausted. I am almost tempted to just stay on the stuff. Ugh I just don't wanna feel like this. I take 2.5 mg every other day right now. I just hate not feeling good. The energy is the worst for me. Pain is tolerable with pain meds.
I am gonna try to tough it out. Maybe.
Posted 3/21/2013 12:16 AM (GMT 0)
Im sluggish today to. Energy is low and aching but I think some of it is the weather. Its cold again.

Thank you for the encouragement, I am taking it a milligram at a time, slowly.

Hope everyone has a good day and good upcoming weekend.
Posted 3/21/2013 2:59 PM (GMT 0)
well I have a call in to my rheumy.... I just think I am going to have to stay on the prednisone.... I hate to do that but I just cannot keep up with the way I have been feeling. It has been really hard on me. I have to work and I just hate missing work. Just not worth it. I hope he just tells me to go back on the 2.5 mg a day. We will see. I am better today but it is a prednisone day for me and it does make a huge difference.
Thanks to all of you for the encouragement.
Peggy
Posted 3/21/2013 6:33 PM (GMT 0)
maybe ask about 2mgs a day instead of the 2.5mgs...sure hope you can wean of this medication soon.
Many well wishes...
Posted 3/21/2013 7:52 PM (GMT 0)
thanks and I do too... still waiting to hear from him. Havent thought about changing the actual mgs.... maybe he will suggest that .
thanks
peggy
Posted 3/22/2013 1:48 AM (GMT 0)
Hi Peggy,

I just recently came off prednisone. I'd been on it for 5 years and my blood pressure was high as well as my cholesterol, my bone density was going down, so I decided to come off the pred. I ended up doing it sooo slowly. As in 1/2 a mg every 3 weeks. It took me forever but doing it that slowly was the trick. Every other time I'd tried to come off it I had flared and ended up back on it at a higher dose!

My GP helped me but it was a case of slow and steady. I upped my fish oil intake and my pain killers initially to help me cope with the increase in pain but after a while my brain adjusted and I am now free of the pred and haven't had a flare since. Pain is manageable again

Once I was down to 2 mg I basically just stopped taking it. The hardest steps were from 10mg to 9mg and from 5mg to 4mg for me, so by taking 5 one day and 41/2 the next for 3 weeks then dropping to 41/2 for the next 3 weeks I did it.

Hopefully that helps you. It was very hard to do and I was very tempted to go back up again along the way. Now I am so happy I did it, I have lost so much weight, I feel myself again. I can sleep and everything. turn

Goodluck, its not easy, golitho

Posted 3/22/2013 2:01 AM (GMT 0)
Thanks so much for the kind encouraging words. I talked with my dr today and I just asked him if I could just go back on it. I just hate feeling sooo bad and missing work. I am fortunate enough to have an understanding boss but at the sane time I don't like missing work. My dr told me to just keep in taking it. I have been on 2.5 mg a day for over a year now. That seems to keep my pain and fatigue h det control. So for now I think I will just stay on it. Maybe one day when I no longer work I can suffer thru and get off.
Thanks for all your help and kind words
Peggy
Posted 5/25/2013 3:17 PM (GMT 0)
I just recently cam off the prednisone. I was on 15 MG: came off it
slowly ½ MG at a time. I am now completely off the steroid . My pain and swelling has definitely increased. I believe I have a high
tolerance for pain. I just put up with it no matter what it is. I don’t
have an Apt with my doctor until July. I am not sure if my other
medication is working. My C active protein is 3.78 which is high.
my sed rate is 46. I am not sure if this tells how the DMARD’s
are working. I am new to RA diagnosed around 6 months ago.
I am on Arva and sulfasalazine. I also have a mass in my lung that
has not yet been diagnosed. I hope it is RA lung, however, it is
classified as a mass, by size, not a nodule . I am not sure if RA
lung can be 4.0 cm. I have tried to search this out by have not
yet found an answer. If anyone has knowledge in this area let
me know.
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