Prednisone Withdrawal

[Psyborg]

I'm once again tapered back to 5mg...like 5th time now. We are pretty sure I'm not going to make it below 3mg at this point as I flare every time I get to 2 mg or less. Just wondered how long the withdrawal symptoms last for other people that make it longer than me? :)

I always forget the annoying body pain when I'm on higher doses. The last few days I get these "feathers" of pain (sorry can't think of a better word) off of my spine. And when I sleep whatever side I'm on hurts...or both sides depending on how much I toss and turn. First time around I thought I was flaring but pretty sure this is just from my body wondering where the heck those steroids are.

Doctors think I'm weird because I refuse all narcotic pain relievers, but if this is what a simple addiction to steroids feels like I want no part of an opiate based addiction.

[Pete]

Hi Bob,

I'm also at 3 mg pred now. So far, so good. I'm paying close attention to odd symptoms. My taper rate is 1 mg/month, so 3 more weeks until my next drop. Last time I got off pred (about a year ago), I was fine for about two months, then started having roaming, intermittent joint pains in hips and knees. Those were early signs of a flare. Had two doses of rtx last October and have been fine since. If 3 mg/day is needed to stay asymptomatic, I'm ok with that.

[annekat]

I haven't been able to get below 7.5mg. I always seem to have a little flare in the in the winter, which bumps it back up again. I'm now coasting on 15mg. But will keep trying, now that I know you guys can do it.

[sbeach78]

Wow I can't seem to get below 30 mg of pred. But I as on 80 mg just two months ago they were dropping me by 10mg a week but everytime I get below 30mg I get inflammation.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

[Pete]

Wow I can't seem to get below 30 mg of pred. But I as on 80 mg just two months ago they were dropping me by 10mg a week but everytime I get below 30mg I get inflammation.

Sent from my SAMSUNG-SGH-I727 using Tapatalk 2

Once you get to 30, you may want to slow the taper rate. Below 30, I dropped 5 mg every two weeks down to 20. Then, I dropped 2.5 mg every two weeks down to 10. Now, I'm dropping 1 mg per month. It seems this may have allowed my adrenal glands to wake up more gradually.

[chris.wg]

I drop to 5 tomorrow. I have been able to get off it in the past and my current plan is to get off it after a week at 5 according to the doctor. Only reason I got back on it was to keep me from flareing up during the drug switch. At this current level I get a slight pain in my shoulder right shoulder which is where I felt it when I was first diagnosed it wasn't until some time I realized that the shoulder pain was associated with my WG its not a hard pain kind of a dull aching throb in that shoulder. But assuming this lasts like the last time I stepped down I will probably feel it for 2 or 3 weeks then it will go away. <fingers crossed> if not I'm sure the doctor will put me in with the low dose crowd.

[Alysia]

I can't get under 5 mg. I tried several times, but I had my lessons:sad: . prob I will have to be with my pred untill the rest of my life :love: :rolleyes1:
the headaches that it caused me when I tried to go down to 4mg, the joints pains, ears pains, more coughing, more nose productions, more fatigue, and diahreah (I have colon involvment) :w00t: so it is my "catholic marriage" with pred :blushing:

[mishb]

I have been on 3mg for over a year now. I can't seem to get any lower.
Every now and then I take a 5mg just to take the edge off.

From 10mg and under I dropped .5 every month until 5mg and then dropped .5 and stayed there for a couple of months.
As I said, I am now at 3mg. I tried 2.5mg for a couple of days and it just didn't feel right.
At 3mg my nose is pretty well stuffed (pun intended), but I can live with that.

Rheumy said he is fine with me being on 3mg and taking the occasional 4 or 5, for the rest of my life.
I am also fine with that, if it means that I am not going to flare.

I also do not take any of the heavy pain relievers Bob - I'm with you

Good luck with this drop - maybe 5mg is just going to be the best spot for you

[Psyborg]

I'm always wondering where the withdrawal symptoms end and a flare begins. It seems like such a fine line.

sbeach78, definitely have to slow from 10 per drop at 30. Probably need to try 25 or maybe even 27.5 if you are very sensitive to the drop.

[Pete]

I'm always wondering where the withdrawal symptoms end and a flare begins. It seems like such a fine line.



Bob, that seems to be the $64 question. I hope you can get off pred and stay off without any ill effects.

[Psyborg]

Bob, that seems to be the $64 question. I hope you can get off pred and stay off without any ill effects.

Dr VF has already said I'm not going to probably get off again. We are aiming for 3 mg a day as I always flare when I've gotten low. Though I might try again if I can feel pretty stable at a lower dose. Just hate to flare and necessitate the RTX if I have things controllable with a little Pred.

[BookNut]

I'm always wondering where the withdrawal symptoms end and a flare begins. It seems like such a fine line.

That really must be a challenge. It is very possible that you have Wegs pains, AND some "ordinary" pain as well. I have "ordinary" arthritic and other back pain. A lovely side-effect of the pred that I take for my respiratory issues is that it makes my ordinary pain go away. I usually am on a 40mg 16 day taper. Almost immediately, my "ordinary" pain goes away, and as glad as I am to get off the pred...I miss it when my old "friend" the back pain returns. So hard when you are looking for two kinds of pains.

[Debbie C]

I haven't been able to get past 5 either. I get shakes ( like an anxiety attack ) and pains all over and that's when I even tried dropping it by 1/4 at a time.I am still gonna try to shake it again but I am feeling preety good now and I hate to rock the boat. But good luck to all that are trying...hope you can make it with no problems.

[annekat]

I'm always wondering where the withdrawal symptoms end and a flare begins. It seems like such a fine line.

This confuses me, too. If the immunosuppressant is supposed to be what's controlling our disease activity, then why would we have to depend on pred to keep from flaring? My first flare, the doc focused on raising the MTX, which was only at 10mg./wk, to 15mg., and it worked, but the pred was also raised. The second flare, he left the MTX at 15mg and raised the pred. The logic of it is hard to figure out, but it's not just him, I find myself being intuitive about it instead of logical, and have gotten pretty good at sensing what's going on with the meds. So, while being somewhat arrogant, my doc doesn't have much experience with WG and actually listens to me and lets me talk him into stuff, after a small amount of resistance. If my inflammation levels are still at all high next time I go in, I'll suggest raising the MTX a bit, maybe to 17.5mg. Incidentally, this week I forgot to take part of my split MTX dose, and a mild WG rash of small red dots appeared on my forearm. Barely noticeable, but I know what it is. I took the rest of the dose a couple days later. But the same thing can happen when tapering pred, which I'm not currently doing. So it's hard to know where one med leaves off and the other kicks in.

[annekat]

I haven't been able to get past 5 either. I get shakes ( like an anxiety attack ) and pains all over and that's when I even tried dropping it by 1/4 at a time.I am still gonna try to shake it again but I am feeling preety good now and I hate to rock the boat. But good luck to all that are trying...hope you can make it with no problems. When first on the forum, I couldn't believe these descriptions of the difficulty of low dose tapering.... people dropping by 1/4mg. at a time and such. It sounded so weird, having been used to the routine 10 day tapers with sinus infections, before ever knowing I had WG. Now I understand about the adrenals having fully shut down and the difficulty of getting them back on board. But it still seems weird.... some people can do it a lot more quickly and with a lot less messing around than others.

[carriej22]

I was on prednisone for a long time. The hardest jump was from 5 down. After I got over the shakes, pain, and cranked my imuran up it was well worth it. I spent 6 months going from 2.5 to nothing. I have been off now since March and let me tell you, it's worth it. I wanted to scream at first. My whole body felt like a giant bruise.

However I feel so much lighter without prednisone.

[annekat]

I was on prednisone for a long time. The hardest jump was from 5 down. After I got over the shakes, pain, and cranked my imuran up it was well worth it. I spent 6 months going from 2.5 to nothing. I have been off now since March and let me tell you, it's worth it. I wanted to scream at first. My whole body felt like a giant bruise.

However I feel so much lighter without prednisone. Wow. So it seems that cranking up the immunosuppressant helps in the final stages of pred withdrawal. That makes sense. Better to be on a little more MTX or Imuran for awhile than to be on pred forever. Are you still on Imuran, Carrie?

[Alysia]

the prednisone song live The Singing Patient - YouTube (http://www.youtube.com/watch?v=gYlgtloOztU)

[LisaT]

I love the song, Alysia!

I am trying to get down from 8 mg to 7 and I'm going to have to slow it down… I will take 8 today again because I have a blinding headache and lots of pain… seems more like muscle pain than joint pain, other than my jaw, which hurts when I chew soft strawberries. I'll be making a nice big smoothie soon.

I'm surprised my rheumy, who is pretty experienced with prednisone etc. even if not with GPA, would suggest I go down by 5 mg/week until at 5 mg, then stop cold turkey… Clearly he has never experienced what it's like, and is unfamiliar with adrenal fatigue. Maybe he figures we should rip it off like a bandaid; but if my adrenals are as dopey as I think, that could actually be very dangerous. So I'm kind of making my own tapering schedule, which I'll share with him when I see him next week. Time to go back to the naturopath, too, I think, as they are very good at helping you support your adrenal glands and get them back to optimal function.

I think the response and rate at which we need to taper down is very individual, just like each of our diseases. Proceed with caution! Good luck to everyone who's trying to kick the 'habit'. :thumbsup::hug1::hug3:

[carriej22]

Wow. So it seems that cranking up the immunosuppressant helps in the final stages of pred withdrawal. That makes sense. Better to be on a little more MTX or Imuran for awhile than to be on pred forever. Are you still on Imuran, Carrie?

Yes Ann, there has been no move to take me off Imuran. I bean Imuran in October of 2012. Will probably be on it for... Ever? I don't know. There has never been talk of removing me from Imuran.

[MikeG-2012]

I was on prednisone for a long time. The hardest jump was from 5 down. After I got over the shakes, pain, and cranked my imuran up it was well worth it. I spent 6 months going from 2.5 to nothing. I have been off now since March and let me tell you, it's worth it. I wanted to scream at first. My whole body felt like a giant bruise.

However I feel so much lighter without prednisone.

I'm glad I finally read this thread. I'm trying to taper off for a couple months now. I'll be at 5mg next week. Doc had me alternating days for two weeks stepping down (10mg odd, 7.5 even days, 7.5mg for two weeks, then 5mg odd, 7.5 even, then 5 every day)

I feel like my body is one huge bruise too Carrie. Glad to hear that this is past of the process for some folks (but sorry its part of the process too!!).

[rebekah]

I've been on pred for a year and a half and have never been below 25mg... and next week I drop to 25mg, so I'm nervous. I'm currently tapering at 5mg every month and that seems to be working well for me, so I'm going to continue to taper very slowly. I'll eventually get down to 5-10mg, but slow and steady wins the race, right? So glad to hear so many of you are doing well tapering. And glad to hear you're doing well off pred, Carrie. :)

Good luck with lowering pred, Bob! I hope you'll be able to do so with no problems.

[Psyborg]

Interesting about that shakes...I never attributed that to the taper. I mean I did a bit but it never clicked that the weird feeling I was getting was "The shakes". At least if its that weird feeling like your whole body is vibrating? I usually try to eat some protein (cheese or something) and it seems to subside. Mostly happens at nights when getting ready for bed for me.

[drz]

I'm always wondering where the withdrawal symptoms end and a flare begins. It seems like such a fine line.

sbeach78, definitely have to slow from 10 per drop at 30. Probably need to try 25 or maybe even 27.5 if you are very sensitive to the drop.

Withdrawal symptoms or an increase in normal residual symptoms of GPA tend to decrease in a few days or couple weeks if your body can handle the lower dosage of pred. If they persist more than a couple weeks you can't handle the lower dosage. If they really get a lot worse after that it is probably a real flare that will be usually confirmed by lab work results and indicate a need for change in your treatment plan, like an increase in meds or addition of new med.

[Debbie C]

The thing with me though is that pred is the only thing I am on. I am not on a immune suppressant to "up" the dose to counteract the effects of lowering the pred. Don't get me wrong ,I'm glad I doing well without the other but would like to be drug free.

[annekat]

The thing with me though is that pred is the only thing I am on. I am not on a immune suppressant to "up" the dose to counteract the effects of lowering the pred. Don't get me wrong ,I'm glad I doing well without the other but would like to be drug free. I just wonder if it would be better to be on just the immunosuppressant than just the pred, like Carrie is. If you could get off pred and still be on the other, you'd be past the whole pred thing with its difficult tapering and withdrawal symptoms, and could then just deal with the immunosuppressant, eventually taper or quit it without the problems pred has that way, and be drug free. In a perfect world, I guess. I thought drz's explanation made some sense, too.

[annekat]

On the other hand, if you are getting by just on pred, I guess it would mean you don't need the immunosuppressant anymore. But then you are still stuck with the pred because your adrenals don't want to take over and resume their normal function. Heck, it's confusing.

[drz]

On the other hand, if you are getting by just on pred, I guess it would mean you don't need the immunosuppressant anymore. But then you are still stuck with the pred because your adrenals don't want to take over and resume their normal function. Heck, it's confusing.

The large dosages of pred we need to take for treatment shut the adrenal glands down and they often do not recover to the point where they can do the job anymore well enough to get by without taking some pred or some other similar drug.

http://www.cop-boop.org.uk/steroid_use_&_effects.htm

All about prednisone:

gihealth.com - built for patient satisfaction (http://www.gihealth.com/html/education/drugs/printable/printPrednisone.html)

And the problems from lack of cortisol:

http://www.nytimes.com/health/guides/disease/exogenous-adrenal-insufficiency/overview.html

[annekat]

So I guess you are saying, drz, that continuing on an immunosuppressant is not going to help you get off pred if your adrenal glands have shut down to the point of no return. So in Carrie's case, she was able to get off pred because her adrenal glands were able to come back on board. But she is still on the Imuran because her doc feels she may still need it to control the disease activity. But the Imuran would not help the adrenals come back on board if they weren't able to, and then she'd still be on pred, too. It's starting to make some sense. Those look like good links, and I'll check them out when I get a little time.

[chris.wg]

My problem with reading posts on this thread is I wonder about the logic of going straight from 5 to 0. My first bout with pred I was at 60 for a few weeks 3 I think somewhere around there. First attempt to taper was down to 50 but that didn't go so well so we went to 55. Stepped down 5 every so often for the next couple months. Doc I had didn't want me on pred if I didn't have to be. And I do understand why. But I am on it now with the drug swap between Cytoxan and Rituxan. For syptom control. Started at 30 and just tapered 5 a week I am currently in the last week. My concern is the jumping straight from 5 to 0 when last time I went down 1 mg at a time for like 3 or 4 days. It is a new doctor and all but I also wonder if the concern was time and dosage the first time I was on it vrs a much shorter time period as well as I wasn't experiencing a flare when I was put on it. Either way Friday will tell for sure how well I handle it that's the first pred free day again.

[Psyborg]

5 straight to 0 seems quick to me. Maybe if it is short term then things are different though?

[drz]

If you have been on large dosages for more than two weeks, then most physicians will strongly recommend a taper to avoid an adrenal crisis. There is more information about this in the links posted ahead in this thread.

[annekat]

A shorter term would make a difference. Sangye, a formerly very active member, always said if you had been on high dose pred (20mg. or more, not sure) for more than two months, that your adrenals would have shut down and you would need a very slow taper especially at the end in order to get them to kick back in, if they are going to. So it sounds like you've been on a six week taper from 30mg., which isn't quite 2 months, but I'd still feel a little wary, as you are. It doesn't seem like it would do any harm to let you go a little slower from 5 to 0 if you feel more comfortable doing that.

[chris.wg]

that's kind of been my thoughts doc wants the 5 to 0 jump he didn't feel I would suffer the issues so much as if I were on it longer and preventing me from being on it longer by not tapering the last 5 either way I will let everyone know the results.

[renidrag]

I went from 80 to 0 in ten months, the last being 5 to 0. I knew that most here thought that was too fast however I went with the Doctor and I am still Pred free.
Dale

[LisaT]

My problem with reading posts on this thread is I wonder about the logic of going straight from 5 to 0. My first bout with pred I was at 60 for a few weeks 3 I think somewhere around there. First attempt to taper was down to 50 but that didn't go so well so we went to 55. Stepped down 5 every so often for the next couple months. Doc I had didn't want me on pred if I didn't have to be. And I do understand why. But I am on it now with the drug swap between Cytoxan and Rituxan. For syptom control. Started at 30 and just tapered 5 a week I am currently in the last week. My concern is the jumping straight from 5 to 0 when last time I went down 1 mg at a time for like 3 or 4 days. It is a new doctor and all but I also wonder if the concern was time and dosage the first time I was on it vrs a much shorter time period as well as I wasn't experiencing a flare when I was put on it. Either way Friday will tell for sure how well I handle it that's the first pred free day again.

I think too many doctors know little about the whole adrenal gland problem. Or they know but don't pay attention. I would be inclined to go more slowly than the doc recommended, and if you have no problems continue... I'm having a lot of problems trying to go from 8 mg to 7 right now. So I'm going to alternate days and seek the help of a naturopath and/or endocrinologist before trying to decrease it much further.

[annekat]

My doc initially frowns on my regulating my own taper, slowing it down from what he says, but knows he can't do anything about it since I have enough pills prescribed of 10mg, 5mg, and 1mg, to be able to do so at my own discretion. In the end, he is OK with what I do. But I think he also doesn't fully get the adrenal gland thing and how difficult it can be at the lower doses.

[mishb]

My GP told me that until I came along with information from here and from my rheumy, that the normal practice for getting off pred was, after you get to 5mg then everything is alright.
He told me that they always advised patients to reduce 1mg a week until they were off - so 5 weeks and you are pred free. He said that he wasn't aware of anyone that had issues with the reduction (this clinic has been open for just iver 30 years)

It wasn't until my Aunty had terrible withdrawal symptoms (that I told him about) that he advised that their clinic will revisit the taper protacol.

So, I guess it is possible to get off them - either reducing 1mg a week or straight from 5 to zero.

[chris.wg]

Thanks for the input everyone. Lucky for me my first day I'm suppose to be pred free is Friday and my day off. I will probably try the jump down even though last time I went 1 mil down every 3 days. If I feel awful I will then dig into my pred stash also to self taper.

[Fran]

I too went from 80 to 0 in a year, but unlike Dale (?) the last month I was cutting the 5mg tablet into tiny pieces down to 0. I have been off pred for 15 years but still crossing my fingers as you never know with WG :unsure:

Fran

[LisaT]

That's very encouraging, Fran! Thanks for sharing. :thumbsup::hug3:

[annekat]

Too bad you had to cut pills in tiny pieces, Fran. 1mg pills are available most places, I think, though I guess some would end up cutting those, too.... also alternating methods, day to day, can take care of that. But I haven't reached that point yet, so shouldn't talk. I kind of had to beg my doc to give me scripts for 1, 5, and 10mg. pills at the same time while working with a taper from 20 down to supposedly 5mg/day, which I never made all the way. He just thought I should split the pills or do an alternating routine. I just think it is a lot easier to use the different pills, as splitting them isn't accurate, and alternating confuses me when working with weird amounts like 17 or 12 mg. I'm glad you got off the pred, though... that's the important part! Congratulations!:thumbup:

[annekat]

I've also heard from some on here that alternating methods, such as 5mg. one day, and 0mg. the next, can help to kick start the adrenals. My doc wanted me to do 10mg one day and 0mg the next, which I was unwilling to try. And I was right, I was never ready to go down to 5mg. a day, which that would have averaged out to. But there are other alternations that don't involve 0mg days, such as 10mg. one day and 5mg. the next, for an average of 7.5 mg. per day. And some more complicated alternations that I've read about on here.

[Alysia]

https://fbcdn-sphotos-a-a.akamaihd.net/hphotos-ak-xfp1/t1.0-9/10534645_10152611358986177_7103491475250789743_n.j pg

Thanks, Phil, for posting it on fb :thumbup:

[Psyborg]

https://fbcdn-sphotos-a-a.akamaihd.net/hphotos-ak-xfp1/t1.0-9/10534645_10152611358986177_7103491475250789743_n.j pg

Thanks, Phil, for posting it on fb :thumbup:


I resemble that picture :)

[Pete]

Dr VF and I have been watching a gradual uptick in creatinine over the past several months. This month's reading apparently plus a bit of extra fatigue rang the bell. Weekly metabolic panels to monitor creatinine and back up to 5 mg pred for now. Hope it helps.

I'm ok with being on a low dose of pred as long as my labs are good and I'm asymptomatic.

[Psyborg]

Sorry to hear that Pete. I hope the 5mg does the trick for you.

[chris.wg]

Day 1 from 5 to 0. Well I have had a headache most of the day and been a bit tired. No shakes or flare up issues though so I think I will give day 2 a shot. Hopefully the headache and fatigue will lessen as time goes on. Side note my nieces little visit left me with a present. A head cold involving sinus and throat. I avoided it while they were here but family caught it and in turn I caught from family. I don't think the cold is why I'm tired or have a head ache but it surely cannot be helping it.

[windchime]

Day 1 from 5 to 0. Well I have had a headache most of the day and been a bit tired. No shakes or flare up issues though so I think I will give day 2 a shot. Hopefully the headache and fatigue will lessen as time goes on. Side note my nieces little visit left me with a present. A head cold involving sinus and throat. I avoided it while they were here but family caught it and in turn I caught from family. I don't think the cold is why I'm tired or have a head ache but it surely cannot be helping it.

You might want to wait a couple of days until you get through the cold before dropping down to 0. In the past, for me, pred has helped prevent colds from turning into bronchitis. It would probably help with sinus swelling too. Just a thought.

[LisaT]

Dr VF and I have been watching a gradual uptick in creatinine over the past several months. This month's reading apparently plus a bit of extra fatigue rang the bell. Weekly metabolic panels to monitor creatinine and back up to 5 mg pred for now. Hope it helps.

I'm ok with being on a low dose of pred as long as my labs are good and I'm asymptomatic.

Do you mean to tell me there is such a thing as asymptomatic? This is great news! :hug3:

[LisaT]

Day 1 from 5 to 0. Well I have had a headache most of the day and been a bit tired. No shakes or flare up issues though so I think I will give day 2 a shot. Hopefully the headache and fatigue will lessen as time goes on. Side note my nieces little visit left me with a present. A head cold involving sinus and throat. I avoided it while they were here but family caught it and in turn I caught from family. I don't think the cold is why I'm tired or have a head ache but it surely cannot be helping it.

I hope you feel better! I'm dealing with the exact same thing... A cold my son passed on this week. Up since 4 with a headache trying all my remedies. It's my excuse to lounge around and do very little today so I can be better by tomorrow when my son and hubby are back from a boys' getaway... I hope you can rest up too. I still get freaked out by cold symptoms because over the past few years they have usually led to breathing difficulties. I have all my tricks and tools at the ready just in case...:sad:

[chris.wg]

Day too and I just got a mild headache at 530 pm much better then the around 11 am yesterday. It may or may not be pred related. But as I am going thru this I will assume it is. Since it is in the same general region of the head as yesterday's . Kind of in the back a odd spot for a head ache really. back right hand side. Fatigue is almost nonexistent. Cold dose Unfortunately is hanging around. It has lightened a little bit but it has done that before these past couple days so I wont pretend to say its going away. Cindy I read your advice and would have probably done just that had I not already been off it for a day since I read it just before going to bed. I didn't want to put my body thru the ups and downs over and over again.

[Psyborg]

Supposed to be on my last week at 5mg...but still having a ton of issues. Either I'm having withdrawal or starting to flair up. I'll have to chat with the doctor. I went to an amusement park on Friday...so it may be I overdid it. Used up a lot of spoons for a fun day lol.

[chris.wg]

Hopefully you can get off it. I was having a few minor issues at 5 till the end of the week but by the end was smooth again. In my thoughts and prayers.

[LisaT]

I'm still stuck alternating between 7 and 8. Hope you're able to kick the habit!

[Pete]

Been back up to 5 mg pred/day since Wednesday. Feeling a bit more energetic. Lab in the morning to check creatinine level. Hope it's starting back down.

[chris.wg]

Well I have been pred free as of Friday so approaching that 1 week mark. Thought I would give a update. I still have headaches but VERY mild and easily manageable. Getting less every day. Fatigue isn't really noticed. But the energy levels don't seem to be what I am use to. Although I am still sick so right now I am chalking energy up to that. Good news on that front is I am feeling better just not well.

[Psyborg]

I'm at the end of my 5mg timeframe, but just now starting to feel normal. I'm thinking I will wait another week for going down...or I'll get excited and do it sooner lol. Doesn't seem like a flair at least.

[chris.wg]

Take it at the rate you need its good to hear your about ready to step down. DOWN with PRED.... lol or at least until the next time ;) but it is good to get off it when we can.

[annekat]

I'm at the end of my 5mg timeframe, but just now starting to feel normal. I'm thinking I will wait another week for going down...or I'll get excited and do it sooner lol. Doesn't seem like a flair at least. Oh, the excitement! I'd be glad to get to 5mg. Seems smart to wait to go lower since you just started feeling normal. But do go for it, and congratulations on getting that far!

You might try some sort of alternating approach, like 5mg. one day and 0mg. the next, or 5mg., then 2.5, then 5. I haven't tried it myself but am thinking about it, when I get to that point, since I've read that has worked for some others. It's been implied that the day of little or no pred will somehow kick start the adrenals.

[Pete]

Creatinine down to 1.36 from last week's reading of 1.54. Energy level seems to be nearly normal. Drove almost 500 miles in under 8 hours to get home from Galesburg, IL. Mini vacation to see an old friend. The Boxster handled the "autobahns" pretty well - nearly 30 mpg at just over 70 mph. :). The driver is pretty tuckered but glad to be home.

[Psyborg]

My taper is only to 4mg next. Just trying to decide if I push this week or next :)

[jvilner]

Just saw my rheumi. She's not sure anymore if I have WG!! Have to do more tests and a helicobacter pylori test. Anyone done this or saw a connection with WG? Anyways I'm down to 15 mg prednisone and she told me to reduce 2.5mg every 10 days until I reach 7.5mg. It's going to be fun, no?!

[Alysia]

Just saw my rheumi. She's not sure anymore if I have WG!! Have to do more tests and a helicobacter pylori test. Anyone done this or saw a connection with WG? Anyways I'm down to 15 mg prednisone and she told me to reduce 2.5mg every 10 days until I reach 7.5mg. It's going to be fun, no?!
that's interesting. why does she think that you don't have wg ?

[jvilner]

My tests were always inconclusive of wg. I just had evidence here and there which added up to wg but nothing firm. It's definitely something systemic and I got treated accordingly. She just expected better results with my hearing and swallowing with the prednisone by now. She wants to gather all the docs together and have a consultation about my case (without my presence this time). I am to see her in 6 wks and hopefully there will be progress as a lot of the docs are in the army reserves now. 😞 She knows abt dr roe lansburg but told me to wait right now on getting another opinion. I'll give it to my next appointment and then I will go see him.

Are you still in canada?

[Psyborg]

That's awesome, if you don't have WG then it's a good thing. :)

Pretty sure I'm starting to flare up here. Wandering pain seems to have returned. Frustrating that I respond so well to the RTX but then it only lasts six months :( I'm starting to think that Immuran just isn't working for me...but that leaves me with pretty narrow options. My liver issues didn't like the MTX before. Kinda stumped on this :(

[Jaha]

Bob,
Sorry that you are not feeling so well. I hope that you get to feeling better soon. Have you called your doc? Best wishes to you, take care.

[Poppy64]

I've been off pred since April 25th. My body aches from my neck down to my toes. Have been takin ibuprofen 3x a day. Talk to dr. yesterday and he mentioned I might need to start on 5mg of pred for a little while. I don't want to do this. Going for labs tomorrow wants to check cortisol levels. Feel great otherwise. Off all meds except high blood pressure and rituxin every 4 months. Not happy about going back on pred. Any suggestions?

[Psyborg]

LOL so I think false alarm regarding a flare. I saw my doctor today to make sure I didn't have an infection. They found a cat hair in my left ear. As soon as they washed it out I my left sinus started feeling better. Weird! Amazing how much a little tiny thing like a hair can affect you.

[LisaT]

Best news I've heard in a while! So glad you're not flaring.:thumbup::thumbup:

[annekat]

That's pretty funny, Bob! A cat hair! But most of all, I'm glad the doc doesn't think you are flaring and that your sinus feels better.

[vdub]

It's been implied that the day of little or no pred will somehow kick start the adrenals.
I'm just now catching up on this, but Anne is right. Pred, or any corticosteroid, replaces the natural cortisol produced by your adrenal glands. When you take pred, the adrenals see that you have plenty of cortisol, so they sort of shut down. The taper off is so that your adrenals will start picking up the slack. If you just quit cold turkey, you would have a very rough go of it -- potentially coma and ultimately death (Addison's disease (http://en.wikipedia.org/wiki/Addison's_disease)). Interesting side note -- JFK had Addison's.

I don't have Addison's per se, but my adrenal glands are essentially non-functional. The entire endocrine system is governed by the pituitary, which is why the pituitary is called the master gland. Without the pituitary, the adrenal gland and all the rest of the endo glands, whether good or not, will not function.

Theoretically, I wouldn't ever need a taper, because all of my cortisol is being supplied artifically with hydrocortisone. The normal pyshiological requirement for cortisol is about 20mg/day of hydrocortisone, which is equivalent to 5mg of pred. I was (am) on 20mg/day of hydro for 4 years and never did feel quite right. Five months ago they put me on an additional 5mg/day of pred, plus my usual 20mg/wk mtx. I'm feeling better now than I have in 5 years. I suspect I'll be on pred to some extent for the rest of my life. However, I am so wired that I really feel a drain on my body at the end of the day. It's a whole lot better than being tired all the time, tho.

This is an interesting corticosteroid strength calculator (clicky thing (http://www.globalrph.com/steroid.cgi)). I was on dex for a while -- talk about being wired!

[Psyborg]

Well after everything I'm pretty sure this is the beginning of a flare up. The cat hair removal seemed to help. But yesterday I woke up and had pain between my ear, my jaw, and sinus. I've not had previous issues in any of those spots, but I figured it might be a good idea to go up to 10mg. I don't want to risk my hearing