Predinisone reductions

[Psyborg]

So...would you wait for no pain on a reduction? I had been pain free, but then the weather changed a couple times and I think that is the cause of my pain this week. (Was up in the 60s for a couple days after being below normal for a while, now we are dropping back down to normal) But I want to be certain...I hate to cause myself any issues. I did have one single hive this morning (on my upper stomach), which makes me a bit cautious.

Erm FYI I'm at 5mg for three weeks now and was going to drop to 4mg on Friday.

[renidrag]

As long as your Doctor said to make the drop, I would go ahead with it and wait and see, you can always go back. The pain is off and on? I'd try it.
Dale

[Psyborg]

Oh it's definitely on and off. The last time I hit zero I immediately flared...so I'm probably a bit overcautious :)

In general I actually feel quite good right now other than aches and pains.

[pberggren1]

I think I'd go a tad slower if you flared last time so fast when getting to zero.

[Dirty Don]

FYI Bob: once I reached 15mg doc tapered every month by 2.5 mg. Once at 5 mg, the taper is 1mg/every 3 mos. It's slow and slightly irritating, but I have had no problems with tapering at all.

[Psyborg]

The doctor suggested every 3 weeks. At this point I'm kinda feeling like I'd like to try 4 weeks instead. Might hold off on the planned reduction until next week.

[Pete]

I have stayed at 5 mg/day since Thanksgiving. I have been stable at this dosage, and wanted to minimize the chance of having a flare over the holidays. I'll discuss the under 5 mg taper rate with Dr. Villa Forte when I see her on 1/29. I'm in no rush to taper off pred altogether as long as I do well.

[mishb]

I have also just started tapering from 5mg to 4mg

This is my second week and so far so good. My rhuemy said I have 6 months to get to 2.5mg but didn't give me a set plan, so my plan is to take it very slow :cool1:

I will stay at 4mg maybe for a month and then try, probably, 3.5 for the next month and see how that goes. I am also, in no rush.

I guess if 3mg is what our systems normally create then getting to 3 and below will be the real problem.

Good luck to everyone in your taper's and I hope it goes smoothly without pain or disruption

[Psyborg]

I asked last time I was up and Dr Villa Forte said there was no reason someone my age shouldn't try to get off Prednisone. She had suggested the 3 week thing, but I think I'm going to play it by ear with the reductions...I want at least a week of feeling decent before attempting a further reduction.

The weird temperature fluctuations right now don't make it easy as I can't tell what is withdrawl pain versus what is from aches from the weather.

[drz]

I asked last time I was up and Dr Villa Forte said there was no reason someone my age shouldn't try to get off Prednisone. She had suggested the 3 week thing, but I think I'm going to play it by ear with the reductions...I want at least a week of feeling decent before attempting a further reduction.

The weird temperature fluctuations right now don't make it easy as I can't tell what is withdrawal pain versus what is from aches from the weather.

I used a similar method just to get down to 5 mg where I have stayed for over past year. I went down by 1/4 mg and waited a week or two till I felt OK and then tried another reduction.

[Psyborg]

Are there .5 mg tablets for Prednisone? I was wondering if I might try half the reduction instead, but I hate cutting the stupid pills in half :)

[Dirty Don]

Are there .5 mg tablets for Prednisone? I was wondering if I might try half the reduction instead, but I hate cutting the stupid pills in half :)

Nope, looked into it already...get a pill cutter at pharmacy...they help some...otherwise, what you miss today you'll get in tomorrow's half a dose!! LOL!

[Psyborg]

LOL

Think I'm going to check in with the doctor tomorrow. Finally realized I've been fatigued for a few weeks now. Not sure why, but it never dawns on me immediately. And my lab work was a bit off...probably not enough to worry about, but I had some protein in the urine for the first time ever so I'm wanting to be certain.

[Psyborg]

So I found this this morning:

Avoid ingesting vitaminhttp://images.intellitxt.com/ast/adTypes/icon1.png (http://www.ehow.com/how_5687522_taper-dosage-prednisone.html#) D or prolonged exposure to the sun for at least one week before you start to taper your dosage. According to the Marshall Protocol, this can alleviate some of the symptoms that you can experience while weaning off of prednisone.

Read more: How to Taper the Dosage of Prednisone | eHow.com (http://www.ehow.com/how_5687522_taper-dosage-prednisone.html#ixzz2Kh5eJGoF) How to Taper the Dosage of Prednisone | eHow.com (http://www.ehow.com/how_5687522_taper-dosage-prednisone.html#ixzz2Kh5eJGoF)

That is interesting to me as I take a calcium + D every day. I wonder if it is causing the prednisone reduction problems. I'm having trouble not trying to stop outright (I Know its a really bad Idea). But the pain every few weeks when I reduce is aggravating :)

[Dirty Don]

That's interesting to me also as I live in AZ...always sunny...what do I do? Turn off the sun????? Seriously, my docs have never said anything like that in my tapering process...and, aside from getting over a bit of pneumonia right now, have never experienced any pain or such in the taper.

[drz]

I understand we take Vitamin D to help protect us against calcium loss that can lead to brittle bones. We are at risk for that because of the meds we take. So i suppose there might be some trade off here but none of my doctors ever talked to me about the vitamin D when I tapered from 60 mg to 5 mg. I just found I had to go slow and wait for side effects from taper to wane before i proceeded to level downward.

[Psyborg]

I'm going to try not taking the vitamins/calcium for a little while and see if it helps. The withdraw symptoms drive me nuts. Whenever I lower the prednisone my hips hurt like crazy and I walk like a little old man for a few weeks. I'm positive it's the withdraw because it always goes away, but pretty much just in time for another reduction.

[Tom]

I'll be watching your taper. Ive been trying to taper for 2 years but my breathing gets in the way. A year ago January, I was tapreing down from the 60 mg to 40 and on down to as far as 10mg and was scheduled to start 5 mg on FEB 5 2012. I ended up in the hospital and I was taken back to 40 mg and have been ther until a couple weeks ago and I was tapered to 30 and tommorow, the 13th I start 20 mg. Right now since my start from 40 mg, my right knee is causing me pain, hands are both swollen and sore. My ankles are sore and filled with fluid. Dont know if its the kidneys or the COPD. Last time I was in the hospital back in November, the on duty pulmo noted after looking at records that my breathing gets worse when I taper. I told him that my regular Drs had come to to the same conclusion. So we will see how this goes. But for now I will watch to see how your reduction goes. BTW, the 40 for the last year had no positive effect on my COPD, hence the suggestion of a lung transplant. GOOD LUCK.

[mishb]

I dropped from 5mg to 4 on the 2nd January and now I need to go, maybe a half or even one lower.
I have some more aches than usual but they are not overly painful.
My nose is a bit more stuffed up than usual and a little more blood.

I'm a little hesitant (scared actually) to go any lower but I must give it a try.
I'll speak to my GP on Friday and see what he thinks about whether to go lower, and if yes, by how much.

I've still got another 4 months to get to the proposed 2.5mg that my rheumy would like to see.....so I can take it fairly easy

Best of luck ...... to all of us.

[pberggren1]

Bob, I would personally message Sangye about this before making any choices or changes in this regard.

[jola57]

Sorry to hijack the post but please read on: Our own lightwarrior has passed away, this is her daughter's post on Facebook

"This is Valerie, Christi's daughter... As many of you may already know, on Friday 2/8/13, the most amazing, beautiful woman we call Mom ended her journey with us here on earth to begin another journey in spirit with the Lord. Her services will be held at Immaculate Conception this Thursday 2/14/13 from 3-5pm. We will begin at 3pm with a playlist of her favorite songs, do her Rosary at 3:30pm, then the mass at 4pm. Any and all friends are welcome to come. We love and will miss her more than any words could ever express....."
Rest in peace and may the light always shine for you.

[Jaha]

I like Tom have been up and back down on preds numerous times. It seems that everytime I taper all the way to 10mgs, I end up in the hospital or with a sed rate of amost 80. I am now trying to taper off 30mgs and am at 22.5 this week. My rheumy only wants me to decease by 2.5 per week until I get to 10mgs and see what happens next. Tapering to fast will cause most of us various reactions.
Jana

[Tom]

10mg is as low as I have been since the beginning. 60 mg for nearly a year and then tried to taper with bad results. Im at my 20 mg starting today and will be on that for another 3 weeks I guess. Like I said in another reply to this, my breathing has gotten worse thru out the last year that I was on 40 mg and seems to get worse every month or so. I just hate going back up on the pred because of roid rage.

[annekat]

Thanks, Jolanta... I just finished reading another thread about Lightwarrior. I'm reeling from the news; though having not known her as long as others on here have, we did have some personal communications. It is always so hard to lose a friend. There are so many on here that I would like to meet in person, and Christi was definitely one of them. My heart goes out to Valerie and the rest of her family and friends.

[Sangye]

Just seeing this thread. Bob, the Marshall Protocol is a fringe theory. It's a supposed treatment for autoimmune conditions (all of them!), which includes abstaining from ALL Vitamin D intake indefinitely. I've never heard of a holistic physician who thinks this is a reasonable treatment. On the contrary, a great deal of research has shown that many AI diseases respond favorably to higher levels of D.

If you're having a hard time with pred reduction, just slow way down. When I was tapering below 5 mg a couple years ago I had to taper by 1/4 mg every week or so. (I'd cut the dose by 1/4 mg and stay at it until I felt stable) Going at that rate I still had pred-taper pain, but it never lasted more than a couple days. You can cut the pills into fourths with a pill cutter. Of course, get your doctor's okay with this before tapering like this.

[mishb]

If you're having a hard time with pred reduction, just slow way down. When I was tapering below 5 mg a couple years ago I had to taper by 1/4 mg every week or so. (I'd cut the dose by 1/4 mg and stay at it until I felt stable) Going at that rate I still had pred-taper pain, but it never lasted more than a couple days. You can cut the pills into fourths with a pill cutter. Of course, get your doctor's okay with this before tapering like this.

I actually taught my GP something the other day.

Since I don't see my rheumy again until June (unless necessary) and they have put me in the hands of my GP (who can contact the rheumy at any time), I thought I would ask my GP about the pred taper that the rheumy wants me to do - get from 5mg to 2.5mg in 6 months.
I went from 5 to 4 and was doing okay at 4 and stayed on 4 for 7 weeks. I wasn't sure whether to go 3 3/4 or 3 1/2 or just 3 so I decided to give my GP a visit.
He said that he had never heard of a slow steady taper like this - whenever they taper someone from 5mg to zero, the first taper is from 5 to 2.5, they have never done 5 then 4 then 3 etc.
My Aunty got very ill from an 8 week taper from 5 to zero and I told him this and that my rheumy wanted me to taper 2.5mg over a 6 month period (he also had a letter from the rheumy stating this). My GP said that this is a new way a thinking for him and he will let all of the other doctors in the practice know, at their next meeting.......I hope he does.

Anyway, we decided to go from 4 to 3 and see how that goes and if it doesn't feel right I will go back up to 4 and then do it in halves or quarters.
I have been on 3mg for just over a week and so far, so good. I guess I will stay here for a month or two and then the next drop is only another half to 2.5

I have not and will not (during this time) reduce my vitamin D as my levels were close to zero before commencing them and I never want to go back there again.

[Debbie C]

Sorry to hijack the post but please read on: Our own lightwarrior has passed away, this is her daughter's post on Facebook

"This is Valerie, Christi's daughter... As many of you may already know, on Friday 2/8/13, the most amazing, beautiful woman we call Mom ended her journey with us here on earth to begin another journey in spirit with the Lord. Her services will be held at Immaculate Conception this Thursday 2/14/13 from 3-5pm. We will begin at 3pm with a playlist of her favorite songs, do her Rosary at 3:30pm, then the mass at 4pm. Any and all friends are welcome to come. We love and will miss her more than any words could ever express....."
Rest in peace and may the light always shine for you.

I haven't been on here for awhile and this is the first I heard about our Light warrior. I knew she was sick while getting all those rtx infusions and was in and out of the hosp. but what happened ? My prayers go out to her family. I'll miss her on here,but know that her and Al are now having deep discussions !!

[Tom]

I actually taught my GP something the other day.

Since I don't see my rheumy again until June (unless necessary) and they have put me in the hands of my GP (who can contact the rheumy at any time), I thought I would ask my GP about the pred taper that the rheumy wants me to do - get from 5mg to 2.5mg in 6 months.
I went from 5 to 4 and was doing okay at 4 and stayed on 4 for 7 weeks. I wasn't sure whether to go 3 3/4 or 3 1/2 or just 3 so I decided to give my GP a visit.
He said that he had never heard of a slow steady taper like this - whenever they taper someone from 5mg to zero, the first taper is from 5 to 2.5, they have never done 5 then 4 then 3 etc.
My Aunty got very ill from an 8 week taper from 5 to zero and I told him this and that my rheumy wanted me to taper 2.5mg over a 6 month period (he also had a letter from the rheumy stating this). My GP said that this is a new way a thinking for him and he will let all of the other doctors in the practice know, at their next meeting.......I hope he does.

Anyway, we decided to go from 4 to 3 and see how that goes and if it doesn't feel right I will go back up to 4 and then do it in halves or quarters.
I have been on 3mg for just over a week and so far, so good. I guess I will stay here for a month or two and then the next drop is only another half to 2.5

I have not and will not (during this time) reduce my vitamin D as my levels were close to zero before commencing them and I never want to go back there again. Im holding at 20 mg but my breathing is suffering. This is the same problem Ive had through out this whole journey so far. Since my taper Ive had my 02 go from 2 liters, with or with out activity to 3 liters with activity and might have to call again this week with a further reduction in my lung capacity. As for the Vitamin D, my oncoligist put me on a 1000 units per day and when I was dx'd with wegs, I was told to stay on it for now and havent heard different since. I want bad to reduce the pred and bone density test show some osteroparosis. Im not holding out for a reduction below 10 mg, the lungs will require that much and one criteria that I would have to meet for a lung transplant is that I would need to be reduced to zero pred or a max. of 10 mg per day and less if possible. Had one Dr at the hospital tell me he thought the pred redcutions caused my exasperations so I figure I will be going back up at my next appointment. That was the other option when he moved me to 3 liters, The pulmo want to avoid raising the dose again.

[Psyborg]

Just seeing this thread. Bob, the Marshall Protocol is a fringe theory. It's a supposed treatment for autoimmune conditions (all of them!), which includes abstaining from ALL Vitamin D intake indefinitely. I've never heard of a holistic physician who thinks this is a reasonable treatment. On the contrary, a great deal of research has shown that many AI diseases respond favorably to higher levels of D.

If you're having a hard time with pred reduction, just slow way down. When I was tapering below 5 mg a couple years ago I had to taper by 1/4 mg every week or so. (I'd cut the dose by 1/4 mg and stay at it until I felt stable) Going at that rate I still had pred-taper pain, but it never lasted more than a couple days. You can cut the pills into fourths with a pill cutter. Of course, get your doctor's okay with this before tapering like this.

I tried it...and got a cold. So I agree...it's bunk! I'm trying .5 mg increments instead of full 1 mg increments. Went to 3.5 this week...we'll see how that goes. Feels less severe than 5 to 4 felt. All in all I feel pretty good other than body aches. Though that cold seemed to pinpoint my involvement areas...I found that weird. Went straight to the left side of my chest and left the right side mostly alone.

[annekat]

I tried it...and got a cold. So I agree...it's bunk! I'm trying .5 mg increments instead of full 1 mg increments. Went to 3.5 this week...we'll see how that goes. Feels less severe than 5 to 4 felt. All in all I feel pretty good other than body aches. Though that cold seemed to pinpoint my involvement areas...I found that weird. Went straight to the left side of my chest and left the right side mostly alone. Interesting, Bob. My chest doesn't have a right or left side preference for WG involvement. But I did get a fairly moderate cold a few months ago, after not having caught anything since dx, and back came the WG-type coughing and most pronounced joint pains, those in my hands. Then the cold and joint pain went away, and I felt a little better, but as I suspected, I was heading slowly into a WG flare which finally showed up in my blood tests and I'm being treated for now with higher med doses. It is working, I am coming out of the flare and feeling like my old Weggie self. But it goes to show what a little cold can do, and also how good we become at monitoring our symptoms and what is going on in our bodies.

So, pred reduction is on hold for me now, and when the time comes, the Marshall Protocol will not be involved....

[Debbie C]

The only thing I am taking for the wg is 5 mg pred (no mtx,ctx or anything ) As I mentioned before the inside of my cheeks are puffy ,it was both of them now mostly on the left side. Sometimes its so bad that I feel I'm going to bite down on my cheek. I had to go get some skin cancer removed from my chest a couple of days ago and was put on antibiatics.The swelling seemed to have gone down know SO I'm wondering what this is from .The reumy and pharmacist says it's not the steriods (which I thought it was ) I have an appt with an ent for a check up next week ,maybe he can shed some insight. I've alsd noticed lately it gets worse when I eat yogart or have almond milk.So I'm narrowing it down to sinuses , dairy allergy, my reumy also said that my saliva glands may be plugged up ??? Boy did I get off the subject I was just gonna mention that when I talked to my reumy about this ,I asked him if I will be on pred for the rest of my life and he said probably so. I was just wondering if anyone is of drugs completely and does anyone have the same cheek problem ??

[annekat]

Debra, were you EVER on CTX, MTX or such? I seem to remember you having trouble tolerating those drugs. Or is it just that you are in enough remission to drop those and just take pred?

I mentioned in another thread that I had a swollen parotid gland at the time of dx. This was a lump in front of my ear. I now remember that that gland had to do with salivation, that it is a salivary gland draining into the back of the mouth.... I think?? I have heard of this in connection with WG on this forum, in some old posts. I don't remember specifically the swollen inside cheeks but there was so much going on that there's a lot I don't remember. I'm sure no two cases are exactly the same. Just rang a bell when you said salivary gland.

[Debbie C]

Anne,in the beginning I was on ctx,pred and bactrim.I went into remission and the reumy here took me off everything. The the reumy at CC wanted me on mtx and imuran and I had a rtx infusion (not all at one time though ) but I couldn't tolerate any of them that's why I am only on pred.
What did they do for your parotid gland. That sounds like it could be that cuz I feels like my sinuses are just draining in my thoat. I just ate some yogart and my cheek is swollen again sooo I don't know what's happening. I'll see what the ent says Tues.But did they put you on any sort of meds for your glands ?

[annekat]

Well, Debra, I may be confused about where in the mouth the salivary (parotid) gland drains to.... I'm now thinking the gland is where saliva is made and drains into the mouth to help with chewing and digestion. So if the area was inflamed, the drainage would be affected and the inside cheek area could get swollen and red.... just a guess. But I think it is normal for sinuses to drain into the throat and esophagus, and that is a different process than the saliva draining into the mouth. Again, a guess, with some confusion...?

While I was in my ENT office getting my nasal biopsy, they biopsied the parotid gland at the same time, since it was a semi-hard lump and could be cancerous, though not likely. After that, the swelling went down, so I don't know if maybe they sort of popped it in the process or it was mostly liquid in the first place? I don't remember hearing anything about it after that, no report of cancer or anything. And since I wasn't having salivary problems or swelling in my cheeks that I remember, I pretty much stopped thinking about it. I WAS already on prednisone, though not yet on CTX, and the ENT did increase the pred dose for general purposes, since he was pretty sure I had Wegs, as evidenced by my saddle nose, and that may have helped the swelling in the gland as well.

[Psyborg]

I was looking at Steroid withdraw information. I find it interesting that anabolic steroids have very similar symptoms. Why in the world anyone would intentionally put themselves in the same symptoms baffles me lol. Though obviously it helps them work out and recover from workouts.

[Sangye]

Anne, I'm so glad you're feeling better. Yay! :hug3:

[annekat]

Anne, I'm so glad you're feeling better. Yay! :hug3:
Thanks, Sangye. Still some not so great days but overall, yes, much better. Right now I'm stressed because I need more MTX this week and am having problems getting it covered by my Medicare Part D plan, which is with Humana. They've been covering it but some glitch has come up regarding the Bactrim I'm on at the same time and they want an authorization from my doc... I'm getting a very bad impression of them, with the inconsistency and contradictions I get from their various representatives.... in other words, I think they suck and I want to switch! On top of that, my doctor's office did not follow through today on getting it authorized. I will have to pay $54 instead of $5 for it if someone doesn't do what they are supposed to do. I don't have it. Arrghh! I will pay for it and let something else go if I have to. And then borrow some money from a relative, which I'd probably have to do anyway.... this is a horrible time of year for me. There's always something to gripe about, I guess...

[Sangye]

Sounds like you might need to raise a little ruckus at your doctor's office. Ask the person in charge if they'd like to pick up the $49 difference it'll cost you for them to drop the ball. I'm so sorry that you have to have this extra stress.

[annekat]

Sounds like you might need to raise a little ruckus at your doctor's office. Ask the person in charge if they'd like to pick up the $49 difference it'll cost you for them to drop the ball. I'm so sorry that you have to have this extra stress. Thanks, I'm glad I griped.... I needed the sympathy. I'll call them first thing in the morning (again) and try to speak to a more helpful person, and if necessary, ask what I should do instead of taking my MTX, since I can't pay for it. I'm being a little paranoid; since I'm not crazy about my doc, I'm imagining him thinking it's not his problem and not caring that I have to pay the extra. That is probably over the top. More likely, I got the wrong person this morning and she didn't get the message through properly. I'm being paranoid about other things in my life, too! March is my most difficult month, and March is the month two years ago when my big Wegs flare happened that got me dx'ed. How I got through those days financially, I don't know.... generosity of family members, mainly.

[Sangye]

You know what's helped me when I've gotten in situations like that? Visualizing the perfect conversation beforehand. What would you say, how would they respond, etc... if it went the best possible way. It's relaxing and every time I've done that the conversation goes that well or even better.

[annekat]

You know what's helped me when I've gotten in situations like that? Visualizing the perfect conversation beforehand. What would you say, how would they respond, etc... if it went the best possible way. It's relaxing and every time I've done that the conversation goes that well or even better. (I know this is getting off topic.... sorry).... great idea Sangye, in fact, i've been doing that.... here's part of it: "Well, I have a couple weeks worth of left-over Cytoxan.... should I take that instead, since you won't go to the trouble of contacting my drug plan to authorize my MTX, which I need NOW!?"

[Sangye]

Hmm, well that isn't how I would picture an ideal conversation.... That's what I'd say in a confrontational one! LOL Ideal means you're calm, clear and polite and they're kind, understanding and willing to work with you. Ease.....

So in my ideal conversation I'd be very calm and relaxed and say something like, "My situation is that I need more mtx by (date) and I'm not able to pay for it out of pocket. The only way for me to get it is if the prescription is authorized by my insurance, which means this office needs to contact them and provide what's needed. I know you don't want me to go without mtx any more than I do. How can we make this authorization happen so I can maintain my progress?"

By referring to them as "this office" it takes the sting out of saying "you guys." They'll be more willing to help. Even if it's one person who's responsible for it and you're talking to them, it still feels better to them if you put it like that. Less threatening.

I've learned this stuff the hard way. OMG. And my really awesome therapist in AZ taught me so much.

[annekat]

Oh, I knew as soon as I posted it, it was too confrontational, but just didn't feel like going back and re-doing it. The part about the Cytoxan I might reserve to say in an "innocent" way, like... "well, should I just go back to that then, as I still have some.....?" since I know my doc doesn't want me on it. Overall, I just want to keep it simple and not too wordy, but get to the point. I can't believe this could be such a big deal. I need to talk to the right nurse there and hope she is there today. I live in fear that my doc will be out of the office and I know he's off Fridays so it has to be today. Yesterday I was at work so it was hard to call again later in the day.

Thanks for the suggestions, good ones, as always.:smile1:

[Psyborg]

Finally down to 2mg today. Anyone else find that under 4 it gets easier to taper? I was in pain every other week from the taper all winter, but going to 3 didn't cause me any issues at all. Decided to push on to 2mg more quickly as a result.

[Pete]

Hey Bob,

I've tapered down from 5 to 1 at the rate of 1 mg every two weeks since late January. Friday is the day I get off pred. I've had no problems so far (he said knocking on wood).

Good luck with the rest of your taper.

Are you enjoying the Buckeyes' run in the tournament? Going to be hard to top yesterday's finish!

[Dirty Don]

Once one reaches around 3-4 mgs, you are actually producing what your body would...so, if and when one's adrenals wake up, then the taper should be pretty much painless and effortless since one is in a 'match' mode with the body...just hope the adrenals get it!! LOL!

[Psyborg]

The Buckeyes are trying to give me hearth failure Pete ;)

I'm guessing that maybe it is that my adrenals are coming back online now. That would explain the easy of 3.5 to 3 to 2.

One side question...does old prednisone lose it's effectiveness. That was one other thought I had is I was taking half of some older 5mg tabs for a while. Wondered if that might be part of the issue.

[annekat]

Bob, I had some pred a couple of years old or more and my doc said it would be OK to take it, that it should still work. However, I can't find it, so can't test it right now.... but I did take some awhile back when it was already old and it seemed to work.

At such time as I try to go below 10mg or 5mg, I'm hoping there will be 1mg pills available, since splitting them can be so difficult and inaccurate. Seems I've heard of them.

Congrats on getting so low! You're on your way.

[Dirty Don]

The Buckeyes are trying to give me hearth failure Pete ;)One side question...does old prednisone lose it's effectiveness. That was one other thought I had is I was taking half of some older 5mg tabs for a while. Wondered if that might be part of the issue.

Ah, the Buckeyes are my dark horse team...so was G'Town, choked on that one! Anyway, pred will still be in the 90% effective range after a year...so no real worries there. Kind of a forced taper if you will! LOL!

[annekat]

Ah, the Buckeyes are my dark horse team...so was G'Town, choked on that one! Anyway, pred will still be in the 90% effective range after a year...so no real worries there. Kind of a forced taper if you will! LOL! I'm glad I don't care about sports. Good info about the pred, my doc was pretty casual about it and could be wrong. Yes, good way to taper, though, just take old pred!

[Jaha]

Good luck to all that are tapering and almost off preds. I'm down to 12.5mgs this wk and the dr. wants me to do that for 3wks and then go down to 10mgs for 3wks and let her know how I do. With the tapering I have already done my sed rate is climing up again. Go Buckeyes!

[mishb]

I've been tapering from 5mg and need to be at 2.5mg by June. Have done .5mg a month and am now stuck at 3mg

Even though I feel okay, (maybe slightly more achey), my potassium is down, kidney function reducing and CRP is elevated more than usual.
I thought the hospital would have called me about it but they didn't, so obviously they are not as worried about it as my GP is.
My GP advised to just stay at the 3mg for another month and then see if the bloods stablise or not.

I can hold at 3mg since I still have a few months to go and only .5mg until 2.5

Good luck for the final taper Pete and Bob

[Psyborg]

I'm thinking the weird symptoms I had a few weeks ago (feeling almost drunk and dizzy) was the Adrenals kicking back in. I haven't had any further issues and the taper has improved. Crossing my fingers :)

I have an appointment in Cleveland on Thursday so hoping for the best ;)

[Hammy8241]

After several false dawns, when I reduce the pred now, I only drop if/when I feel good with the current level. That could be two weeks or two months but then only 1mg at a time (15mg downwards)

I can't say this approach works as I'm still taking the dam stuff but this way I can live well. Lowest I've been is 5mg but currently on 7.mg

[Pete]

It's not how much you're taking, it's how well you feel!! Good luck!

[annekat]

Been mostly at 20 since my little flare, tried to drop a bit, went back to 20 because stress got the better of me! Now, going to try a drop again.....15 today, 20 tomorrow, 15 the next day, alternating like that for an average of 17.5mg/day. That's the plan.

[Psyborg]

Doctor appointment went well. Very short as not much to talk about, which is good. Only bummer is she doesn't want me ever drug free as I flared multiple times and she says its not worth the risk. So immuran and I look to be long term friends.

lol not sure why I put this in the pred reduction thread.

[DEE]

Only bummer is she doesn't want me ever drug free as I flared multiple times and she says its not worth the risk. So immuran and I look to be long term friends.

Im in the same boat,would rather be safe than sorry. Like you I have had multiple relapes:( Managed to get down to 5mg preds. but anything lower my body throws a wobbly :(

[annekat]

Only bummer is she doesn't want me ever drug free as I flared multiple times and she says its not worth the risk. So immuran and I look to be long term friends.

Im in the same boat,would rather be safe than sorry. Like you I have had multiple relapes:( Managed to get down to 5mg preds. but anything lower my body throws a wobbly :( This is so good to know in advance, as one who has not yet gotten below 10mg. pred. Still on increased pred and MTX from a recent flare. Feel safer not trying to cut the drugs too fast. But would like to get down way lower on the pred eventually, and it helps to hear others' experience. Plus I hope my doc knows what he is doing with the lower dose tapering and will listen to me about it's working for me.

[DEE]

Luckily have doctors that listen to me ,they know I know my body best and cant really on my blood results which I have done monthly still.
Had to work down from 60mg taken in dec 2012 for major flare.
Took a while but realised preds work better for me if I take half first thing am and then the rest mid pm and not to worry about any increases that might happened along the line.

[annekat]

My doc has recently started letting me regulate my own taper from 20mg. to 10mg., since getting over my flare, showing that he realizes I'm the one in a position to know how it is going. That's good, and a big change from when I was first sick. I just think it may get trickier to negotiate with him about the dosages under 10mg. and 5mg., when the time comes, since I've learned on here that such small adjustments can do so much. Hopefully he understands all that and will give me some free rein. I'm curious, are people able to get pred in 1mg. tablets? Otherwise, that could be a lot of tiresome and inaccurate pill splitting.

[DEE]

I get 5mg ,2.5mg and 1mg so I can alter my dose to whatever is needed,did not get told about 2.5mg or 1mg found out about them on the internet and then asked GP for some ,Hope this helps

[Psyborg]

I get 1mg pred tabs. So they are definitely available.

[annekat]

I get 5mg ,2.5mg and 1mg so I can alter my dose to whatever is needed,did not get told about 2.5mg or 1mg found ouut abouut them o the internet and then asked GP for some ,Hope this helps Yep, it helps a lot! I'd seen them on those "Canadian Pharmacy" online drug sites but don't want to go there, and very expensive. Will just badger my doc about it to make sure he knows they are available.

[Rose]

In South Africa there is nothing less than 5mg tabs. I have tried in the past to quarter the 5mg tabs but they just disintegrated. My Rheumatoloist said it was not such a bad idea to stay on 5mg and as I had no option this is what I have done for the past 4 years. The other day I again enquired about the 1mg tabs, thinking they may now be available. I had a very helpful pharmacist to whom I told my story about my problem reducing from 5mgs to 4.5mgs. He suggested that I take a 5mg tab, crush it, add 50ml of tepid water and stir until dissolved, then measure out 45ml of the solution which would give me 4.5mgs of pred. This is what I have been doing for the past 4 days and so far so good. I intend to stay on this for a few weeks and then reduce to 4mgs (40ml). If all goes to plan I hope to be off the pred in about 3 months or so.

[Rose]

Reading over the posts here maybe I should taper even slower, maybe go down half mg every month or so. Better safe than sorry!! and I have been on 5mgs for a long time..

[annekat]

That's a great tip from your pharmacist, Rose! I will remember that in case I run into any problems with not having the right kinds of tabs. Splitting pills is a big pain, and they almost never split evenly.