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trying to get off prednisone again

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Posted 2/7/2012 12:11 AM (GMT 0)
Yup, I can't believe it but I am yet again going to give it a try. When weary said her pain was no worse once she dropped from 10mg I thought I may as well try one more time.

This time I am going oh so slow, previous attempts have seen me flare within 2 weeks, this time I am dropping by 1/2 a mg every 3 weeks. Lets see if I can do it.

The impetous this time came because my cholestrol is high, now I have a very good diet and can't think what to cut out to decrease my cholestrol so I reckon it must be the prednisone making me hungry all the time that has made me put on the weight. So I have to go back for blood tests in 3 months and hope that I can get off the dreaded pred at the same time.

Wish me luck, or any advice would be much appreciated.

Big hugs to all golitho yeah

Posted 2/7/2012 1:49 AM (GMT 0)
Oh Golitho... *sigh* gosh I hate prednisone!!! I have been on this merry-go-round for months!! and cannot seem to get off of it!! I am on 10mg and have tried so hard to go down to 5mg, but I just feel dreadful, and I have to work.  It really, really combats the fatigue of the RA..

I recently went for an eye exam and the eye doctor told me that my cholesterol was high, he could see it in my eyeballs!!! gave it a name, but cannot remember! I am a vegetarian and with the stomach paralysis my diet is even more limited.  I was shocked to ssay the least and racked my brain as to what I could be eating to cause it to be seen in my eyeballs of all places.  You mentioned the prednisone causing yours to increase? it can do that?? Oh dear me!

I hope I am misunderstanding and this is not the case! If it is, then I am surely going to have to get rid of this med.

Also, I am fair skinned and my face has been really rashy and red the last few months, almost blotchy, and I am wondering if it is from the pred as well? Anybody?

I understand your flares trying to get off of it, they are miserable! Why, the pred barely keeps my joint pain at bay as it is, along with the MTX.

Keep us posted!! I wish you luck, I really do!!

Posted 2/7/2012 2:16 AM (GMT 0)
Golitho- go go golitho! I think that's a great plan to decrease by just 1/2 of mg. every 2 to 4 weeks! I don't know what kind of flare you go into- but sometimes you just have to ride it out. Is it bad enough that you need narcotics or to wrap your limbs in ace bandages? Mine never got that bad during a taper so I don't want to talk out of turn.
I wish you much success! I feel so much better in so many different ways being off the prednisone.
Posted 2/7/2012 3:25 PM (GMT 0)
I am doing the taper too, one mg per month. Because I am going down so slowly, I honestly cannot tell if it had been or is still working. I just know that I want off and plan to not go on it again, if I can help it. I see my doctor on March 5th. By then I hope to be at 3 mg and then can just stop.?



Good luck with your taper and hopefully no flares.

take care,
Posted 2/7/2012 5:50 PM (GMT 0)
No way Denita! Do not stop cold turkey! The lower the dose you are on the more extreme ratio it is when you taper. You'll get there take it easy!
Posted 2/7/2012 6:21 PM (GMT 0)
Oh, thank you. I wasn't going to stop cold turkey, had enough reactions in the past to know better. Sorry if it looked that way. What I should have said is that I am hoping that 3 mg will be low enough to quit at that point. If the doc says no, then I will continue to taper until low enough to quit. I just do not want to go back up again. I am finally not getting the food cravings and am losing a pound here and there.
Posted 2/7/2012 6:52 PM (GMT 0)
no- I knew you meant quit at 3 mgs.- you can't. I remember when I got to 0 oh happy day!
Posted 2/11/2012 1:21 AM (GMT 0)
Thanks forall your support. Lovely to hearfrom you again Momto, how are to doing? Its been a while since we've been in contact!

Yeah I am hoping I can keep tapering oh so slowly and manage the pain issues.

What happens weary is that all my joints swell at once and I can't move, in the past its been about 2 weeks after I finish the prednisone, then they put me on a mega dose and I'm back where I started out or worse!

But as fate would have it, I woke on Tueday to an abcess in my top molar. I am now on anti biotics and have an appt with an oral surgeon, it looks like I'm going to lose the tooth. My dentist doesn't feel my immune system would cope with the months it takes to do root canal and the resultant bugs that weep into your system. I'll have to discuss options with her re filling the gap. Oh joy of joys and just as I return to work after our summer break!!!

My youngest child has been accepted into a very prestigious dance high school. 500 kids auditioned for the 30 spaces offered for the intensive dance stream. They also have music and drama streams as well as main stream classes. But he made it in. We are over the moon for him. He just lives for dance, I go up this morning to find him already up and in uniform dancing around his room. (today is Saturday so not a school day!!!) He has his afterschool dance school today. He is so excited.

Denita, I'd be very careful stopping at 3mg too, I have been told to keep the 1/2 mg taper going all the way to 0. Really really slowly. If you have been doing amg per 3 weeks then keep it up all the way down, don't rush it or you'll regret it. Like I have several times over at this stage. 5 years I have been on the pred roller coaster.

I don't think the pred caused my cholesterol issues I just thought it made me put on weight and lose vit D, but I could be wrong. Does anyone else know?

I'll keep you all posted. Hugs to all, golitho

Posted 2/11/2012 7:02 AM (GMT 0)
Wow pred bad stuff I hate it. Was of of it for a while but back on it. First time I've heard of it raising ur chlosteral. Doesn't surprise me drug. Companies aren't always in it to make people better. Pred makes me gain wheight so quick. Does it increase depression? Sick of drugs doctors!!!
Posted 2/13/2012 6:11 PM (GMT 0)
Golitho..that is wonderful for your son!! I now have two out of highschool, one is wandering a bit trying to figure out what he wants to do,and one has joined the military and will leave this summer for basic training. So, really it is just my daughter at home and she is doing well in highschool, with a 4.0GPA. If I didn't have RA life would be grand!! I love my job, it is my dream job, but somehow the RA just hangs over it and me like a dark cloud and pretty much dictates my days, as usual.  More so now that I am tapering off of the pred, I really depended on it to get me through my work days.  I have had that happen with a tooth before, and talk about pain, oh my goodness!!!  The entire left side of my face was swollen and I looked like a chipmunk, it was horrid! I'm so sorry for you!

As for the tapering it is going well, and my face/skin is looking a bit better. I would like to stay at 5mg per day, but know I really need to get off of it all together. For me , I just ache in my hips and feel exhausted.

Hang in there!!! I know it is tough!!

Posted 2/13/2012 7:49 PM (GMT 0)
I am down to 4 mgs now and I have been awakened every nite since with hip and back pain. My hands, especially the fingers and wrists ache constantly and my skin issues are getting worse. I don't want to go back up or stay on it so we, doc and I, are going to have to figure something else out. If there is anything else?

Golitho, congrats to your son. I think dance school would be awesome. Its something I have always secretly wanted to do. I am as bad at dancing as some are at singing - I'm not giving up my day job - thats how bad. haha
Posted 2/13/2012 8:13 PM (GMT 0)
Golitho,
Congrats on your son...way to go, hun...Music and the Arts make for brighter children...
My daughter is gifted with Music and her Math skills are fantastic too....Hope he
enjoys the school........
So sorry about your tooth, maybe look into an implant if possible...Hope
your feeling better soon...
Many many well wishes to everyone...
Posted 2/14/2012 12:46 AM (GMT 0)
Thanks Char, yes my dentist mentioned the possibility of an implant. I just dread the cost of it all! The anti biotics are working so the pain is gone, I see the oral surgeon today , my rheumy told me sooner rather than later to have it out and to stay on anti biotics for the whole time sigh! I always feel a bit nauseous on anti biotics and really tired. But it could be the underlying infection too.

Denita, this is what I am scared of, I have dropped to 4 1/2 mg now but will stay at this point until my tooth is sorted but I worry I won't be able to work if the pain gets too high again. I feel like I'm on a seesaw with the pred. I keep holding onto Weary's story of managing the pain without it. I so desperately want to plateau out somewhere at a level of pain I can manage.

Hi Momto, 2 kids all grown, congrats, wow I still have my sons at school. I know what you mean about the dark cloud, I'm paranoid I'll lose hours of teaching if I keep having to have time off with my health. There just always seems to be something breaking down with me. I have had our whole summer off and now just as classes resume my tooth goes on me. My feet are continuously getting worse and I worry about how they will cope with the amount of standing on them I have to do. Your dark cloud analogy fits really well.

I'm such a positive person but this disease can sure push your buttons.

Wow there is a thunderstorm happening outside, pretty impressive.

My GP told me that 5 mg is really not too bad, much less damaging than 10 or 15mg doses. She feels 5mg is ok long term. I just hate the moon face and the extra weight. I am determined to give it ago even if it takes me a year to get off it.

Best wishes to you all, golitho

Posted 2/14/2012 2:44 AM (GMT 0)
So grand to be off the preds! I've gone thru the weaning process a few times. Each time I've had to go back on thanks to intense flares. I also had the lovely news that my adrenals were shot because of all the steroid use. Not a barrel o' monkeys to get those back in shape.

I'm off the preds completely now (after careful and slow weaning).....for a big whopping two weeks (yay!!) thanks to good results I am getting from Cimzia. I did NOT want to go on the big-boy drugs. I'd tried MTX (did NOT work for moi) and Enbrel (worked for a few months, then suddenly quit). I was exasperated at that point, so went an alternative route for about a year and a half. Had some good results pain-wise initially with this plan, but then noticed the flexibility/mobility of joints, particularly in my hands, was on the decline. This was scary, so I am now in the starter kit stages of Cimzia......hoping the good luck continues with it. (did my second set of injections today)

Best of luck to all on this roller coaster ride!!
Posted 2/14/2012 5:08 PM (GMT 0)
Golitho..Well..I wouldn't say *grown* when it comes to my boys rolleyes But they are out of school and figuring life out, with a bit of help from us along the way :-) How are you doing with the tooth infection? When I had mine a few years back, it took several days before the pain was under control.  I chalked the horrid infection up to having a puney immune system.

Being off some of the pred sure makes a difference! I seem to be so fatigued, I almost have a lack of motivation to get anything done, and would rather sleep.  Not that I can do that, so it makes for very long days!  I'm wondering if I am going to make it with just the MTX..but I am so fearful of the biologics and the side effects you hear on t.v..cancer, TB etc. I took Enbrel for a bit, but it didn't help that much.

Although I have to say even at 10mg for many months and sometimes higher doses, I didn't develope the *moon face*, but did gain about 10lbs. I was pretty thin so my face is a bit fuller.  I was afraid I would get that!! So, probably at 5mg you are safe.

June..I am glad the Cimzia is working for you, I may have to go that route as well.

Posted 2/14/2012 6:03 PM (GMT 0)
Momto3....

The feelings you describe about being off the prednisone is how I felt when taking MTX. I simply could not get out of bed. Had to put a stop to that. I too, did not want to take the biologics/TNF blockers. Now that I see the damages that occurred when I was in my "alternative phase" I wonder if that was a good choice. We are in a bit of a box on our decisions of which route to take.....for now, I'm trying the big-boy drugs and have found great joy in some pain-free days. (my pred Rx was also for 10mg.....some days that was okay, some days more was needed.....hoping now to stay off!)
Posted 2/17/2012 1:22 AM (GMT 0)
Its so depressing isn't it. I struggle along on humira, methotrexate and prednisone.Plus I'm on mobic. I am so hoping that I can drop this prednisone without my symptoms getting out of control.
Anyway now I'm on hold until my tooth heals. these antibiotics are making me feel sick. Flaggyl is such a horrid ab...
Cimzia sounds like a good option. I'll be interested to hear how you go on it, June. Keep us in the loop won't you, regards, golitho
Posted 2/17/2012 3:53 AM (GMT 0)
Hey go- sounds like you have a pretty intense reaction when you get to 0 on prednisone...don't know what to say...maybe your body is too used to it after all these years. My dr. says 5 mgs. a day is a safe dose too. Not sure if you can try to ride out all that stiffness. ask your dr. if you can try.
Posted 2/20/2012 6:18 AM (GMT 0)
Hi Weary, feeling a bit weary myself today.

I am so determined to get off the prednisone. This Wednesday I will drop another 1/2 mg to 4mg for the next 3 weeks.

I am hoping this tiredness is from my tooth rather than my joints but we will see.

I am so sick of the weight and being hungry all the time plus the insomnia that prednisone seems to do to me.

Every time I've come off it I feel like myself again, so that is my aim. I figure if you can do it so can I!

Hope life is good for you right now, golitho

Posted 2/20/2012 6:39 PM (GMT 0)
Hi June...That is how I felt initially on the MTX, as if I had been hit by a truck, it was pretty horrid. However, after a few months I adjusted and it wasn't so bad. I found taking Leucovorin after helped quite a bit. I am thinking about taking something along with it, but I am scared of side effects.

Golitho...Reading about your weight gain and eating, I can understand! I am no longer on the pred, been off for a few days, and am still 13lbs over my normal weight. Working nights I am a chronic snacker, more from boredom than anything else. The pred makes it so much worse, but I find I am still wanting to eat and snack:( There needs to be a support group for pred users even! My jeans are really tight, it is very depressing! Hang in there, it sounds like you are on track!
Posted 2/21/2012 7:48 AM (GMT 0)
 

Good that you are down to 4mg. Goltho.  I'm happy for you.  I hope that you can get off of it.  Sorry that you are not feeling too good though.  I went down to 4 1/2mg. but my joints were very unhappy the next day so I'm back at 5mg for a bit longer.  Wonderful to hear that your Son was chosen(Yippee!) and that he can enjoy and express his love of dancing. :-)

"pretty much dictates my days, as usual".

Ugh!  You're not kidding Momto3.  That's why I hate RA.  It's so unpredictable.  I just take my drugs(sometimes more) and just hope the day turns out okay for the planned activities.

Congrats to you and everyone else on getting off the Pred.  Hopefully you can stay off of it.  My Rheumy isn't thrilled that I'm still on pred. of course but he would really like me to be off the MTX.  Me too! :-)

Posted 2/21/2012 5:49 PM (GMT 0)
MsOuchie..I don't like the MTX either and would like to throw it out if I could! I have a couple of times and lived to regret it!

It is day five off of the pred and I have belly issues like no other, belly issues that mimic UC or Crohns (sp?) I had them before I started the pred and my GI could find nothing wrong, I started the pred and all those pesty symptoms went away and now without the pred are back. I am so tempted to go back on the pred because I have to work tonight and my belly is twice the size it should be, it is horrifying.

I despise inflammation sad It seems to be everywhere!

Posted 2/22/2012 11:01 PM (GMT 0)
Oh Momto, that sounds so awful. Yes we seem to be up for any inflammatory condition out there. My dentist told me that the prednisone had masked the pain of my tooth thats why it go so bad before I noticed anything. He told me its common on pred to have bad teeth because its covering up the pain caused by minor inflammation.
You'll have to go and see about your belly.
I'm getting niggly lower back pains again, like you I had these before but they went away with the pred now they are back agan...ho hum.... such is life.
Thinking of you all out there in Inflammatory Land, golitho
Posted 2/23/2012 12:27 AM (GMT 0)
Golitho...That is something about our teeth and pred! At my last check-up my gums were fantastic, but now they have really gone downhill! It has to be the pred sad I know I need to go back to the dentist, but part of me is just embarrassed to go blush It is amazing that the pred can mask so many of our symptoms eh? I thought I was going to get off not feeling too bad going off of the pred, but boy was I mistaking! I thought I had some sort of stomach bug, but from what I have read it is the pred or a lack of it I should say!

But so far the scale has not budged! My poor husband has always struggled with his weight and I have always been sympathetic, but never really *thought* about it until now! To have your clothes feel so tight, is just miserable! You see all of those commercials of people talking about weight and how bad they felt etc, and now I know exactly how they feel!!

Yes, I need to go back to the GI doctor and see what he thinks of the pred taking care of my belly issues and hopefully something can be done, this is just yucky to say the least!

How is your tooth? Are you feeling better on that end? I know you mentioned some back pain,do you mean around the spine area? That is so true, inflammatory land, most of us our lost there and it seems forever!

 

Posted 2/23/2012 12:20 PM (GMT 0)
 

Aww Momto3, I'm sorry to hear about your stomach problems. cry   That does sound bad.  I can understand your considering going back on Pred. since it seems to relieve your tummy symptoms but I do hope that your GI discovers what is causing the problems in the first place.

Regarding MTX, I'd also like my hair to stop falling out please.  shakehead

Yes, inflammation is terrible to our health in many ways and also most  meds help one problem but cause others.  Royal PITA.  I did have obvious oral thrush from my meds. plus occasional yeast infections and even a fungal infection on my big toe(yellow nail).  One of my Doctors suggested that I use Fluconazole for 8 months.  Oral thrush, yeast infections and yellow toe nail all gone.  Yay!  My inflammation was high but now its at 1.  Some things are working but not exactly sure which ones since everything is connected and we changed different drugs at around the same time.  

As far as the weight gain there are so many of our friends and family experiencing this also for years.  I wish there was a "magic pill" for this problem too.  With the inflammation and many years on Pred., I always lose weight.  I'm normally 125 pounds but I have gone down to 102 pounds which I hate.  I looked like a stick and felt so sore and weak. shakehead I was 110-114 pounds for some time but now that the inflammation is down and the fungal infections are gone, I am back to 122 pounds and I feel better for now thankfully.  I sure do wish the same for you and everyone else here.

 

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