Can't Seem To Get Off Of Prednisone

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Vannie
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Date Joined Aug 2010
Total Posts : 795
   Posted 12/11/2011 1:45 AM (GMT -7)   
Been on Humira almost eight months, and iti s helping.  Taking Celebrex, Pred, Humira and Tramadol, as well as bp meds and Vit D.  Was down to 5 mg of pred for a couple of weeks, and everything started hurting again.  Still, stayed on 5 mg until my lower back decided to act up.  I'm thinking this has nothing to do with my RA...probably the DDD and OA I have in my back, but geesh!  Once I get down to 5 mg of pred, even w/all the other meds, my hands, ankles, hips and knees start acting up again. I really want to get off the prednisone for all the obvious reasons, including weight gain.  Seems like my quality of life is not very good when I go down to 5 mgs, though.  I'm hoping Humira will start lasting longer after the shot every other week and things will even out.  Anyone else have this problem getting of Pred?  Any suggestions?

Vannie
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Date Joined Aug 2010
Total Posts : 795
   Posted 12/11/2011 1:45 AM (GMT -7)   
Correction____I have only been on Humira for eight weeks, not eight months. Sorry!
 

BadDay
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Date Joined Jan 2011
Total Posts : 874
   Posted 12/11/2011 3:26 AM (GMT -7)   
Hi Vannie,Glad to hear you not having any problems with the Humira.
How long have you been on prednisone? that has a lot to do with how hard it is to get off,they say i cannot stop  taking prednisone now as been on it too long 25yrs but i have got dose down to between 5-10mg day
have you tried tapering off eg take it one day miss next do this for a week or so then cut out an extra day for another week  that way you can slowly cut back and as the humira builds up it may also help.
 
 

Vannie
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Date Joined Aug 2010
Total Posts : 795
   Posted 12/11/2011 4:21 AM (GMT -7)   
Hi, BadDay,

Yes, I have tapered this way and that! LOL Just seems like less than 10 mg and I don't function well. I have been taking prednisone off and on...but mostly on, for a year and a half now. I hate the weight gain, too. Ugh

BTW, how are you...when is that appointment with the blood specialist?

V
Fibromyalgia, Seronegative RA, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 8376
   Posted 12/11/2011 11:46 AM (GMT -7)   
Vannie, have you maybe considered getting referred out to a pain management clinic
for your lower back? Might be an idea...a good moist heating pad can help low
back pain...I can't use ice very often...but if you can maybe try ice packs...
some in the cp forum got some relief from tiger balm patch, maybe give that
a try...I have low back pain from a car accident in 1997....so it's something
I'll probably have to live with..hate to say, but, it helps to have a spouse that
gives support...Many many well wishes and Prayers....On a good day my
pain levels come down to a 4...but lately it's been up riding a 6...and having to rush to get
Christmas gifts in the mail on time and cookie baking is rough...Hope you can find something to help...

Bstrong
Regular Member


Date Joined Jul 2010
Total Posts : 107
   Posted 12/11/2011 7:26 PM (GMT -7)   
Hello Vannie, I was never for a long time on high doses of Prednisone - exluding Medrol packs I needed to take few times during my flare ups. I was for around 8 months on 5mg Prednisone every day and then tappered to 2,5 every day. Currently I am on 2,5mg every other day. But once we tried with the doctor it failed and after Medrol pack I needed to stay on 2,5 every day again. After 3 months we tried again and here we go - I am on 2,5mg every other day. Never loose your hope! I was so disapointed too at the first time when failed and was scared to try again but thankfully it worked. I think you need to be more patient with Humira - 8 weeks is still not a long time. Wait at least 2 months longer and always check with your doctor on the Prednisone - what is he saying? Mine took me from 5 to 2,5 mg after around 6 months after being on Humira, I am 1,5 year on Humira and still on the Prednisone - it takes time... The goal is to get rid of the Pred at all, I am hoping the day will come finally :)

Best wishes!!!
Polyarthritis - diagnosed July 2010, suffering from May 2009, Sweet Syndrome

Prednisone - 2,5mg/day, Plaquenil, Vitamin D, Fish Oil, Humira

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 12/11/2011 9:53 PM (GMT -7)   
Hi, Bstrong and Chartreux!

Thanks for the input. I guess I was just trying to taper off the Prednisone too early. My RD said to start tapering after the sixth shot of Humria. I tried, but it didn't work, so I called them and they said to go back to 10 mgs and try to taper later, when I feel I can do that. I guess I will wait for another month or so to try my taper again. RA teaches us patience, doesn't it?!?


Sorry to hear about your back, Chartreux. Seems like once we hurt our backs, they never quite recover. I did try moist heat and it helped SO much. It helped more than any of the meds I took. Go Figure! I can't do the ice on my back...makes it hurt more. Ice works well on my knees, though!

Blessings,
V
Fibromyalgia, Seronegative RA, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 874
   Posted 12/12/2011 7:01 AM (GMT -7)   
Hi Vannie
LOL well still waiting for apointment but one good thing is i have lost Heaps of weight so far up to about 15kg(33 pounds)
ha id sugest the Leukimia weight loss program, Medications put the weight on & medications take it off - see their is Light at the end of this Tunnel smilewinkgrin
 
But OMG i Can't Stand (& My Hubby Can't Stand) the Night Sweats or better called the Night Swims i literaly Pull of my Night shirt struggeling -have you ever been soaked wet in rain and tried to get a tight shirt off? it sticks to you, i change the sheets Every Day-well Hubby Dose and he Can't hug me he goes oohh Cold Clamy Wet !!
But otherwise all going as Normal
Thanks and Keep trying with the Prednison you will find a level you can coast along on for a while.
Take Care

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 12/12/2011 9:26 PM (GMT -7)   
Hi, BadDay,

Are the docs giving you something for Leukemia now, or are you stil waiting to get any treatment at all. I am worried about you, sweetie. Keeping you in my prayers!

Vannie
Fibromyalgia, Seronegative RA, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

BadDay
Forum Moderator


Date Joined Jan 2011
Total Posts : 874
   Posted 12/13/2011 12:16 AM (GMT -7)   
Hi -No just monitoring Blood results & waiting appointment.

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 12/13/2011 1:11 AM (GMT -7)   
So why are you losing so much weight? Are you off prednisione altogether? I am just amazed at how long you are having to wait for an appointment. Hang in there, sweetie!

V
Fibromyalgia, Seronegative RA, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/17/2011 8:11 PM (GMT -7)   
Hi Vannie, I can't seem to stop taking pred either, even though my hair is starting to fall out and I think it is even giving me high cholesterol..I'm only supposed to take 5mg per day, but sometimes I take more than that depending on the pain level of the day and my rheumy is not happy about it at all.

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 12/17/2011 8:15 PM (GMT -7)   
My rheumy wants me off of pred, too. I saw her yesterday and she is okay with me taking 10 mg for a while long because I fell and hurt my back and shoulder. I have had an awful week, though. I have been tempted to take another 5 mg to see if I could get some more relief. Taking Celebrex, Tramadol, prendisone, and Soma, and still a high pain level. Arrrrrrrrrrrgh. I'm so tempted to take some more prednisone.....
Fibromyalgia, Seronegative RA, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

bucci
Veteran Member


Date Joined May 2006
Total Posts : 1489
   Posted 12/18/2011 10:27 AM (GMT -7)   
Hi Vannie,
I was taking 20mg of prednisone for almost 2 yrs and when I tried getting the dose down it was torture and I would get double sciatica screming down both legs from lower back.

I eventually got down to 5mg and I also switched to prednisilone which was suppose to be easier on I think the liver. I was still in pain so really ended up upping my pain meds but I just wanted off the prednisilone.

Then I switched off into hydrocortisone. So now I started with 20mg 2 or 3 x a day and got it down to 20 a day which I take all at once in morning and should really take at half doses.

I have to look up this Humira. I too am waiting 3 months for my first rhumatoligist appt since moving to NY
20 yrs of doctors . DEC. 2009 tested positive for lyme, bartonella, ehrichiosis, HHPV6, chlamadyal pneumonia .
parasites :strongylides, diaoebia fragialis, hook worm.

Hep C ....fibro, rhumatoidal,depression,

shanbr
Regular Member


Date Joined Dec 2009
Total Posts : 103
   Posted 12/19/2011 10:40 PM (GMT -7)   
I have been on prednisone for about 6yrs now. I go in tomorrow to fill out forms for enbrel. After using it for a couple months, she will start to taper down off the pred. I take 10mg a day.

I will be going down 1mg every month due to how long I have been on it. Some people need a small dose to go down on as you will get the RA symptoms if you go off it too fast for your own body. Everyone's body takes medications and withdrawals differently, so even if you get great advice, you still may need to do something a different way.

Never get off a drug without your doctor knowing as you don't want to enter the ER one day having her confused on why you are there.

I wish you much success in your medication.
God bless.

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 222
   Posted 12/20/2011 10:54 AM (GMT -7)   
I'm having the same problem with the prednisone.  Started back on the cimzia a month ago and tried cutting down to 5mg of pred to wean off but just isn't cutting it.   When I was on Humira the shot every two weeks worked for awhile but then I had to start doing a shot every week.  After about 3 years it just didn't work any more.  I don't know if the cimzia is going to work well or not, will have to give it some time and see.  You might want to ask your rheumy about taking the humira once a week and see what happens.  Winter in New England is always hard for me and even on the cimzia and 10mg of pred  I suffer when the weather is damp or a storm is coming (which is most of the time here)
good luck
Alicat

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 12/20/2011 1:21 PM (GMT -7)   
I started 10 mgs prednisone back in July and was told to taper down 1 mg a month till gone. After four months and another doc visit I went back up to the ten and tried again. I am now back down to 6 mgs and I feel worse but I am not going back up on the prednisone again! I have gained over 40 lbs since july and I am not liking it.

I go back to the rheumy in March and we are going to talk about maybe trying something else. The plaquenil is just not working but he wanted to give it a full 6 months before we called it quits.

I don't know if I am going to make it till March but will certainly give it a good try. (also added 600mg ibuprophen to long list of meds)
Denita

forum moderator/RA

Rheumatoid arthritis, Fibromyalgia, meniscus tears in left knee, Cancer survivor

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/20/2011 6:31 PM (GMT -7)   
Vanni, so sorry you are having such a rough time of it..I think that same way..maybe a bit more pred! It seems I am always so terribly tired and the pred does seem to give me a boost of energy.  I think I need a pred support group, I just can't seem to taper, so matter how hard I try..I know it is bad for my health, but still..

Vannie
Veteran Member


Date Joined Aug 2010
Total Posts : 795
   Posted 12/20/2011 9:22 PM (GMT -7)   
Hi, momto3,

I am back up to 15 mg a day for a while.....my back and shoulder are acting up since I fell. I just can't take the pain, so I guess it is either the ER or prednisone, and I choose prednisone. I wonder if I should call my RD and tell her what I am doing. Sigh

V
Fibromyalgia, Seronegative RA, Asthma, High BP, DDD, Bulging Discs in Cervical & Lumbar Spine, GERD, Prediabetic
Prednisone, Lexapro, Cardizem, Lisinopril, Advair, Lipitor, Vit D, Joint Supplements, Soma, Tramadol, Fish Oil Supplements
I take one day at a time, and try to save my energy for the joy in life.

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 281
   Posted 12/21/2011 12:19 AM (GMT -7)   
Hi Vannie! Sorry to hear that you fell. Geez, like you needed that on top. You know your Rheumy best. If I was raising my Pred. more than a few mgs., I know that my Rheumy would want to know AND if I fell, for sure.

I'm joining your "not being able to taper off Pred. club". I was on high does of Pred. about 5 times through the years. The last time 30mgs., I started about 5.5 yrs. ago and haven't been able to get off of it. I am presently on 7mgs. Sometimes I go to 6.5mgs. and stay there a couple days but then the pain gets to me again so I go back to 7. That's the lowest that I can go.

I have my Rheumy appt. and tests tomorrow, so I'm hoping that he will give me a yukky Medrol shot. It would be great to feel good for the Holidays and then some. I also have my infusion tomorrow. Nothing like packing it all into one day. :) Hope that you feel better.
-Type 1 Diabetes
-Heart murmur
-Severe RA
-Asthma
-Raynauds
-other stuff

mscrowbar
Veteran Member


Date Joined Nov 2010
Total Posts : 877
   Posted 12/21/2011 8:49 AM (GMT -7)   
MsOuchie, welcome to Healing well. Its great to hear from someone new.

If you would like, maybe you could start a new post and introduce yourself to us.

We are a caring bunch here and will do our best to answer any questions you may have or just lend an ear when you would like to vent. We also appreciate any advice you would like to give.

Hope to see your post soon,
Denita

forum moderator/RA

Rheumatoid arthritis, Fibromyalgia, meniscus tears in left knee, Cancer survivor

msOuchie
Regular Member


Date Joined Dec 2011
Total Posts : 281
   Posted 12/22/2011 1:16 PM (GMT -7)   
 
Hi Denita:
 
Thanks so much for the Welcome.  I appreciate it. :-)   Hopefully, you will be feeling better soon.

-Type 1 Diabetes
-Heart murmur
-Severe RA
-Asthma
-Raynauds
-other stuff

momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 12/23/2011 9:45 PM (GMT -7)   
Hi Vannie...What would your rheumy say? Would you get a lecture? Mine really frowned at the amount I was taking and just doubled my amount of vicodin in hopes I would cut back...like I can take those and function during the day? what?! But I know I have got to stop it, I have even considered dumping them in the toilet! and flushing!

Glowin
New Member


Date Joined Dec 2011
Total Posts : 2
   Posted 12/28/2011 10:57 AM (GMT -7)   
Hi --Newbie here--I too cannot seem to leave the prednisone behind (nurse here, know what it does to the body). I am stuck at 10 mg od, less makes life intolerable, have not been specifically diagnosed yet, 8 months ago woke up with shoulders and arms unuseable after a weekend music festival where I played a lot of resonator guitar, a heavy instrument I have played for years. Sed rate was high, and prednisone gave me mobility within 8 hrs. Also has given me 40 extras pounds in 8 months, have a specialist appt in 6 weeks, meanwhile, pain has eased up except at night, and I can no longer lift my musical instruments, which is a heartbreak. At night, it is the right hand which lets me sleep only an hour at a time, then I wake screaming with shooting pains from knuckles to elbow and all points between. Once I am up and put a tensor on, the pain subsides, but when I return to bed, I get another hour of sleep at most. I am learning to dread the nights. Finally at 5 am I sleep the sleep of the truly exhausted, then the alarm rings for work at 7 am. And it is always the hand that wakes me. If I dare to think I can play a tune, I will feel it in the shoulders for the next two days. I have a standard transmission car, and that is a challenge to drive for an hour each way to work. There are times when the right hand won't grasp the shift at all, so I have to cross the left hand over to shift. I know, not safe, but you do what you have to at the time.
 
My question: Any one else who supposedly has RA being bothered by the dominant hand pain, or do I also have carpal tunnel syndrome into the mix? I am only 8 months into this condition, with no warning, no other health issues, and now it takes an hour to get showered and into clothing, never mind make up and hair! I so understand what some patients go through when they wind up having to get help with ADLs. So discouraging!

Alicat
Regular Member


Date Joined Aug 2008
Total Posts : 222
   Posted 12/28/2011 1:23 PM (GMT -7)   
I hae psoriatic arthritis in hands, feet, knees and spine but the hands are the worst.   Just started back on Cimzia and still taking 10mg of prednisone a day.   Had to see my eye specialist today - and have Iritis back in both eyes.   Scared that the Cimzia isn't doing what is should and may be causing more problems.rather than helping.  Never know from day to day what part of my body will be attacked next.  Hope uou get some answers and some help from a good rheumatolgist,
good luck.
Alicat wink
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