lowering your predisone

thnaks Tina....you always give good advice.   Just happy to be on 10 and hope its works.  I ahve a feeling she will wnat me to go to 8 next time, but i will tell her I want to go to 9.

After a month, my doctor told me to reduce my prednisone from 30 mg to 20 for 3 days, then to 10.  I had complained so much about the swelling in my feet and legs that I think that was why he wanted to reduce it.  I could hardly walk by afternoon.  So I went to 20 for 3 days with no ill effects.  But day I was to go to 10 and after reading all of these comments, I decided to just do 10.5 today. Feel the same as yesterday.  Swelling is minimally better.  It sounds like 10 is ok, is that true? But lower should be slower?  The 30 mg was killing me.

I like how that sounds. I will see what my Dr. has to say.

so you are saying go donw 1mg a month.  And in 10 months i may be them?  If all goes well.

follow the rule of 10%... When you come to 8 or 7mg, it is too much to reduce by 1mg at the time, so it is better to reduce in 0.5mg steps using the same slow method. My reduction was 15, 12.5 10, then 9, 8, 7.5, 7, and currently reducing to 6.5mg. I can understand trying to reduce from high dose faster, but when you get ~7mg that is equal to psysiolugical dose that your adrenal produces naturally, so not too many side effects. In addition, your adrenal glands were "asleep" and need to awake and start producing cortisol, and that takes time. Dont rush.

Yes, Nick's point about the adrenal glands having to start working between 8 and 7 mg is very good.  I didn't want to load you down with too much info in my earlier post.  At that level most of us have to slow down to let our adrenals start catching up.  It's hard to explain the sort of fatigue we sometimes experience at that level, and lower as well.  I can best describe it as a sort of flatness.  I was at about 5 mg and I swear if the house had been burning down I'd not have been able to respond.  This didn't last long, and since then I've felt increasing energy although my stamina still low.  

I have been able to cheat the slow taper a bit.  Starting at the taper from 6 to 5.5 I tapered according to the rules for the first half of the taper.  Because I felt well enough, at the halfway point I slid down another .5 mg.  I won't go into exact description here, but except for the first day I did that, my change in daily dose was never more that .5.  This meant that it took me between four and five weeks to drop a whole mg.  I am still doing this as I move from 4 to 3, and am partway through the 3.5 to 3 taper.  I am using the longer form of the taper now than I did between 10-5 as the lower the dose the larger the percentage drop.  I feel I'm getting close to my lowest possible dose but so far so good.

Has your doctor said anything about achieving a lowest possible dose until the disease goes into remission, or are you expected to work down to zero no matter what?  My doctor told me last visit that she was happy with me at 4 mg.  She should be ecstatic if I've achieved 3 mg by next appointment! 

So that was a long answer to your question.  The short answer is, unfortunately, it's very unlikely that you will take 10 months and be off pred at the end of that time.  Our aim is to achieve the lowest dose which adequately (not even perfectly) controls our symptoms so that we gain the most benefits with the fewest side effects.  Within two to five years *most* cases will go into remission, although not all.  I've even heard it said that people who come off pred in close to one year are more likely to have a relapse, although this isn't a rule and I think we all hope we're the lucky one.  As I've been on pred over a year, I haven't been one of those lucky ones, and best case scenario has me on pred at least until the end of this year.  I'm more likely looking at much longer on, hopefully, a miniscule maintenance dose.  

How do we really know when the PMR is in remission?  Since the predisone covers up the pain.  I have to say that since I started on predisone I have had no pain. Is it possible it is gone?  probably not i have only been on it fro 6 weeks. wishfuk thinking.

oops should have said wishfull thinikning..

All of us with PMR face the balancing act of PMR (bad! inflammation is really bad for your whole body) versus prednisone (bad! side effects like bone loss, weight gain, skin changes, etc.).  The devil and the deep blue sea!

 If you really have PMR, it would be rare (not impossible) for it to be gone so soon- I think it generally lasts at least 6 months. If you stick to the 10% redcution and have no return of pain, you may be one of the lucky ones who has a short course of this!  

When I am reducing, I sometimes have some typical PMR pain (much milder than the original severe pain) right after the reduction.  If it does not go away in a few days, that tells me that I have just reduced below the lowest dose that will control my symptoms.  I return to the previous dose and stay there longer. If the pain does go away in a few days, I stay on the lower dose. 

PMR affects different people very differently. It is fine to try slowly lowering the dose as a test, just don't stick to a set plan if your body is sending you a sharply worded message that you have gone too far!  Best of luck!

Donna, I want to cheer you up.  The chances are very good, especially if you do all the other things you can to help yourself heal, that you'll be able to reduce your dosage, slowly and successfully, to a level where PMR symptoms are held in check, but the side effects are reduced to practically nil.  Remember, "It isn't slow if it works".  I thought when I started and had such a positive response that I was cured.  My doctor didn't tell me that pred wasn't a cure.  I thought I'd be off it in three months!  But I have to say that the past year, learning to tame the two-headed dragon, Pred and PMR, has on the whole been more positive than otherwise.  It was so much better than my previous year of undiagnosed pain.  And I look forward to a third year, second on pred, but pred completely under control, as is PMR!  Fingers crossed.

OH, how sweet to receive this message.  I appreciate this so much. I realize how very blessed I was to get a diagnosis so very quicklly.  My primary was really on top of things and got me to a rheumatologist right away.  He ordered the correct blood work and then the rheumatologist added a lot to those first tests.  Bottom line is that my pain first came about in March, not even really bad at first.  I just kept telling my family that my arms and legs felt like I had been doing a gazillion pushups and a gazillion squats. We laughed at that.  Then it got worse and worse and worse.  By the end of April I could hardly get out of bed in the morning.  I cried out in pain at night just turning over in bed.  I probably would have stayed in bed had it not been for my cute little dog that needed to go out in the morning.  The thought of allowing her to mess in the house was too much, so up I would get. I could hardly put my robe on to get downstairs.  Anyway, by May 2nd I was on 10 mg of prednisone.  When that was not really working, still lots of pain in the morning, by the latter part of May I was on 20 mg.  That is where I am now.  Even with that, my wrists were so bad for several hours first thing i the morning that I thougth I must have developed carpal tunnel syndrome.  A week ago Thursday, I decide to try taking 10 mg in the morning and 10 at dinner.  That has been a miracle.  I have been pain free since.  I am hoping that because mine was diagnosed and treated so quickly that I might be able to get off sooner, but I also do not want to have a set back.  I will stay on it however long it takes.  I am going to put a call in tomorrow to try to get a prescrition for 2 mg tabs.  My plan is to take the 10 with breakfast and take half of a ten, plus two 2 mg. tabs.  I am hoping to do that for a couple of weeks land and then go to 10 and 8.  If I start feeling pain, I will go back up.  Anyway, that is my plan, and I hope my doctor will approve it.  By the way, I have ordered Vitamin K2 from Amazon.  I am not drivng much at all anymore due to some vision problems.  So, I  do a lot of online shopping.  I did the research on the K2 and think it is an excellent idea.  I appreciate all of the help I am getting here.  I feel blessed that I was diagnosed so quickly and I am sure the diagnosis is correct.  Otherwise, I do not think I would be feeling so good with just prednisone and no pain meds at all.  I had mentioned Tylenol, but really did not take much and have had nothing in ten days.  Thank you again.  You are a wealth of information and very thoughtful.  I appreciate the cheering up.  I hope you have a blessed evening.  Cheers to you too.  Donna

Donna we are exactly on the same time line.mine started in March, in the back of my htighs, I kept saying I pust have done somewthing wrong at the gym, the one mornimg I wake up and my arms are killing, once again must have done something at  the gym.  then couldnt get dresse  or wrap a towel around.  Time for Dr. Diagnosed immediately. sent to specailist and started this journey. So lets track her others progress.  Yes I say progress.  I am gettingt his thing out of  me.

Oh, my gosh, I guess we were both lucky to get this diagnosed quickly.  Yes, the towel after a shower, Yikes, I was telling my family tha that I hoped letting warm water run over my back was good enough as I sure couldn't get an arm back there to wash.  Then drying, Oh, my, almost impossible.  Now the guys are lucky here, they don't wear bras.  I would actually hold off geting dressed and almost cry putting a bra on, pulling pants up was horrible.  Thank God that the prednisone has taken care of that.  When I get out of bed now, I cannot believe that I do not have pain.  So, now to start tapering and hope for the best.   I hope that you do well too.  We will have to stay in touch and see how things progress.  Have a good evening.  Donna

thanks Donna, my next appy is Aug 1st.  I iwll keep you posted.  I had to snap my bra in front and turn it  around, we had the exact horrible pain at the same time. Lets keep in touch.

It's sort of embarrassing to tell people that you can't get dressed in the morning. Mr Flip is used to seeing me flap around in my t-shirt nighty until I absolutely must leave the house - some weekend days i don't even get dressed!