Trying the pred taper... Again...

[godgirl]

I know my doc wants me off the prednisone. I get that.

But what's going to make this taper any better or more successful than the others?

I like my rheumy - she's pretty cool. But I don't get her sometimes. My last appointment with her, I went through all my symptoms again - and some were better and some were the same - and at the end she says, "Well, you're asymptomatic, so I'm not going to put you on anything stronger. And let's bring you down on the prednisone." Um... I just got done telling you about all my symptoms, and I'm asymptomatic? Really? I know I'm doing ok, but my eyes occasionally have pain, my hearing is still fluctuating, still have blood in my nose, night sweats are back, joints hurt on and off and now I'm having tendon issues. So, let's go down on the prednisone and I'll see you in three months.

Wait. I'm a bit confused...

So, I've got a second opinion scheduled. And this guy had his residency at Mayo in Rochester. From what I've heard, he's the best chance I have at getting a authorization from my insurance to go to Mayo Clinic. I gave it a year. And my patience is gone. I want them to figure out what's going on. I know that I'm not as bad as a lot of people. I know that. But it doesn't mean I want answers less.

Anyway, wish me luck on the taper. Because I've been at 9mg (from 10) for two weeks and it's not going well. We'll see how I am at 8 in a couple of weeks. Last time, I flared almost immediately at 7... (sigh) And I'm already at 20mg of methotrexate.

Sorry, I didn't mean to complain in this post. Just kinda happened.

Jen

[Pete]

Here's hoping you get your consult at Mayo. I don't think you're asymptomatic.

[pwc51]

I have tapered 3 times now and each time I have flared. The last time I was off pred entirely for almost 1 year but realistically some of the symptoms were there for a considerable period before the flare. The previous 2 occasions I almost hit zero before the flares started.This time I am going to propose going to a low level - maybe about 5mg and see if that holds it for a longer period, rather than worry about getting to zero in short order! I will be having that conversation at the end of February when I see my consultant for the first time post the RTX treatment for my latest flare, in December.

[annekat]

These doctors don't have WG/GPA themselves and don't know our bodies as well as we do, by a long shot. I haven't liked my doc all that well but at least he is letting me manage my own tapers and doesn't get upset if I deviate from what he suggested. I want off the stuff, too, but I know on a day to day basis whether what I am doing is working or whether it is making me worse, and he does not.

[Pete]

I have tapered 3 times now and each time I have flared. The last time I was off pred entirely for almost 1 year but realistically some of the symptoms were there for a considerable period before the flare. The previous 2 occasions I almost hit zero before the flares started.This time I am going to propose going to a low level - maybe about 5mg and see if that holds it for a longer period, rather than worry about getting to zero in short order! I will be having that conversation at the end of February when I see my consultant for the first time post the RTX treatment for my latest flare, in December.

I've been holding at 3 mg/day of pred since early October. I've been asymptomatic for quite a while. My next conversation with my doc will be about getting off mtx. Then, we'll see about coming off pred.

[Christina32]

Each go around we hope the taper is more successful than the last with no real knowledge to how or why I think. (I've read several tapering plans) I went through my first bout determined to get off it, ignoring small symptoms until they caught me - and knocked me off my feet. Unfortunately, prednisone treatment is specified for many things as I've heard the 'treatment is the same' bit. I agree fully with Anne in you knowing yourself and how you feel better than anyone. You'll know what is working and feels right or not. I try not to play doctor but thankfully I have the most wonderful supportive gp who is learning with me. I hope you get a satisfying second opinion, get to mayo and have more success with this taper....

[annekat]

I have read some interesting tapering plans on here, too, involving various various kinds of alternating doses, at the lower dose levels when people just want to get off the stuff. These are not straight alternations, day on, day off kind of thing, but more like 3 days of something, then two of something else, then 2 days of something, then one of something else... that is a wild guess and one would have to find these schedules in the archives or what not, but I know of one person who posts only rarely on here now who successfully got off pred using one of these more inventive type schedules, and it didn't take her long. So that is an idea, FWIW, and I'm not recommending anything specific.

[marta]

Best of luck with the taper Jen. You're at the absolute worst spot in the taper spectrum right now, and because of that you'll probably experience more symptoms, they'll feel more severe, and you'll be constantly questioning the state of your body - is it the taper or am I flaring? This is what I've deduced (through talking with my doc, other patients and my own experience) about the spot you're at. Our bodies normally produce 8-10mg of corticosteroids a day via our adrenal glands. Sadly, as I'm sure you're totally aware, our adrenals go through atrophy when we get on the pred, and now we are totally dependent on the prednisone to function. The corticosteroids are absolutely necessary for staying alive and if you go into adrenal crisis (when your adrenals aren't producing enough in normal life) it can be absolutely life threatening.

So here we are, on pred, and dropping it to try and get our adrenals to wake up. The hardest part is that our bodies need to feel quite distressed before those little glands start to wake up. In my case the hellish drop was between about 8.5 and 5mg (almost 10 months, maybe more.) My doc (who studied and worked at Mayo) is very conservative and asked me to drop slowly. She pretty much left it up to me, and had no problem if I was doing it slow. I'm almost off now (.25mg/day) When you're dropping low doses it doesn't work like dropping higher doses. At the higher doses you can drop 5-10mg every couple of weeks and not really feel anything like what you'll feel dropping low doses. Just think of it as a percentage drop versus a mg drops. Below 10mg I was dropping .5mg every month or so, if I felt really crappy, I'd take longer. Some drops I waited for a couple of months to stabilize my symptoms before taking on another drop. AND with every drop I felt like crap for at least a week. All my old symptoms would creep in, I would be totally wasted and in a lot of pain. But I knew that if I go back up and avoid the drop, I would eventually have to go through this experience - like it or not. I was about to go back to work when I was at 8mg and had to abort because my symptoms made me feel almost as crappy as at the beginning - but it wasn't a flare. It was a pred addiction ;)

The symptoms you spoke of in your original post, are symptoms I experience most of the time. I am in medically induced remission, but I am not the person I was 5 years ago when this all started. I remember being told to not expect to get back to my normal and it bugged me to no end, but I see now that I can have a magnificent life and not be as strong and fit as I was pre-diagnosis. My hearing has never come back fully, and some days it's quite bad. I still have multiple joint pain, headaches, nightsweats (a lot).

I've never really messed around with the tapering other than alternating days when I'm at a half dose (to avoid cutting little tiny 1mg pred pills).

The reason I write this is not to tell you what to do, but to give you an idea of what's ahead and help you avoid unnecessary stress about whether you're flaring or not. You're at a very delicate spot in your med wean, it's good to go in informed and ready (for a little battle.)

Best of luck, and try your best to ride this crappy WG/medication wave like a pro surfer.

[drz]

I have tapered 3 times now and each time I have flared. The last time I was off pred entirely for almost 1 year but realistically some of the symptoms were there for a considerable period before the flare. The previous 2 occasions I almost hit zero before the flares started.This time I am going to propose going to a low level - maybe about 5mg and see if that holds it for a longer period, rather than worry about getting to zero in short order! I will be having that conversation at the end of February when I see my consultant for the first time post the RTX treatment for my latest flare, in December.

My Weg expert at Mayo recommended I stay at 5 mg and my maintenance dosage of azathioprine to reduce the risk of a major flare for me. I agree as the maintenance drugs are causing fewer problems for me than a major GPA flare. For me the risk of a major flare is far worse than the side effects of the maintenance meds. I spent months in the hospitals and three more months in a nursing home recovering. I had major damage to my lungs, kidneys, loss of hearing and balance and will do anything to try reduce the risk of going through that experience again. I was very lucky to survive it the first time and don't want to press my luck any further.

I have been considered in a drug induce remission for past few years but still have some of the usual residual symptoms that wax and wane at times. They get worse in the Fall, especially when I get a sinus infection or bronchitis which has happened the past three years around the Holidays at end of the year. My experts tell me remission does not mean symptom free, just that no other more aggressive treatment is warranted to contain my GPA activity.

[annekat]

My Weg expert at Mayo recommended I stay at 5 mg and my maintenance dosage of azathioprine to reduce the risk of a major flare for me. I agree as the maintenance drugs are causing fewer problems for me than a major GPA flare. For me the risk of a major flare is far worse than the side effects of the maintenance meds. I spent months in the hospitals and three more months in a nursing home recovering. I had major damage to my lungs, kidneys, loss of hearing and balance and will do anything to try reduce the risk of going through that experience again. I was very lucky to survive it the first time and don't want to press my luck any further.

I have been considered in a drug induce remission for past few years but still have some of the usual residual symptoms that wax and wane at times. They get worse in the Fall, especially when I get a sinus infection or bronchitis which has happened the pat three years around the Holidays at end of the year. My experts tell me remission does not mean symptom free, just that no other more aggressive treatment is warranted to contain my GPA activity. I feel that when and if I get down to 5mg. pred, or a bit lower, I might not mind just staying on it, and also on my maintenance dose of 15mg./wk MTX and Bactrim. I guess the MTX would be the one I'd be most in favor of dropping if I could. But the pred really doesn't bother me like it does some people. I know some can feel its ill effects at very low doses. Not me, I don't think, and the effects of trying to stop it could be much worse. However, I do like the idea of getting the adrenals to wake up, if possible. It is a lot to think about, and everyone is different. I think Marta's overview above was a very good one.

[MaxD]

godgirl: I second Marta's sentiments. I started with 75mg prednisone last March, started the taper with Rituxan treatments. When I came down to 7.5mg, some of the old aches and tendonitis came roaring back, plus painful stiffness in legs and upper arms. The docs insisted it wasn't a flare, but rather symptoms of steroid withdrawal. My blood tests showed PR3 down to normal, 0% B cells, so they were positive in their opinion. Now I'm completely off prednisone and getting physical therapy to regain some strength and to treat tendonitis in my ankle. I am exhausted with moderate activity. I'm told it may take 6 months or more to reach a "new normal," whatever that may be.

Alas, while we feel great on prednisone it's long-term side effects (beyond withdrawal) such as atherosclerosis and bone loss are scary. So if all your docs are sure you aren't flaring and recommend tapering down and bearing with the pain and discomfort - well, you have company!

[renidrag]

I got off prednisone in 2010 and bore the pain and aggravation because my CRP and PR3 were also normal. They slowly rose to a level where my Doctor wanted me back on 5 mg. He also gave me a script for 1mg also so I could also taper as I wanted. Well I went from 5 to 1 and so far so good, the pain I was experiencing again is very manageable. I do wish I could lose the swelling on either side of my neck, even when off pred those glands never went back down to normal. I think I can live with 1mg.
Dale

[annekat]

My SED rate shows a normal level of inflammation for the first time in a long time. So I suppose that means it would be a good time to try harder to taper and learn to live with whatever discomfort will result.

[Jaha]

I am glad that you are going to get a second opinion, it is really important to trust that you are getting the proper treatment. I've tried to taper several times and have problems at around 10mgs, with pain in every joint and usually end up flaring with labs all out of whack. I have also been questioning my Wegs specialist, as she sometimes seems that she ignores some of my symptoms, and always seems to tell me that it is my fibromyalgia or my COPD. I just want to know like you whether I'm being given the absolute best attention and tx for this ugly disease. I am wishing you all the best with your second opinion and our tapering off Preds

[mishb]

I have been on 3mg since 2013 and it took me a year to get there from 5mg

Good luck with the taper Jen, you can do it.

Sometimes I found that having a 10mg again (just as a top up) really helped with the crappy symptoms.

[Dkathleen]

I have been off pred for two weeks. My doc would not prescribe 1mg, so I was taking 2.5 one day, then nothing for two days for about a month. Then I went three days without for a month. The pain and depression hit hard. I knew to expect the pain, but the depression made me a bit nervous (probably from the pain). My doc told me the labs were good and to take myself off pred if I wanted. He prescribed Flexeril (didn't help much) and Lunesta. I was having trouble sleeping because of pain. After several nights of decent sleep, I feel much better. Three whole days without extreme pain. I read that drinking Gatorade May help with some issues related to pred withdrawal. I did it. Not sure if it helped, but it did not hurt.

I agree with everyone's comments. Everyone is different. You know your body. Good luck.

[mrtmeo]

I have been off pred for two weeks. My doc would not prescribe 1mg, so I was taking 2.5 one day, then nothing for two days for about a month. Then I went three days without for a month. The pain and depression hit hard. I knew to expect the pain, but the depression made me a bit nervous (probably from the pain). My doc told me the labs were good and to take myself off pred if I wanted. He prescribed Flexeril (didn't help much) and Lunesta. I was having trouble sleeping because of pain. After several nights of decent sleep, I feel much better. Three whole days without extreme pain. I read that drinking Gatorade May help with some issues related to pred withdrawal. I did it. Not sure if it helped, but it did not hurt.

I agree with everyone's comments. Everyone is different. You know your body. Good luck.

Hi DK,
Lunesta is a z-drug and causes dependence (similar to benzodiazepine dependance) just an fyi.
Have you ever tried doxylamine succinate (unisom II)?
That is an antihistamine that has worked well for over a year for my mom and is non addictive.

[mrtmeo]

godgirl: I second Marta's sentiments. I started with 75mg prednisone last March, started the taper with Rituxan treatments. When I came down to 7.5mg, some of the old aches and tendonitis came roaring back, plus painful stiffness in legs and upper arms. The docs insisted it wasn't a flare, but rather symptoms of steroid withdrawal. My blood tests showed PR3 down to normal, 0% B cells, so they were positive in their opinion. Now I'm completely off prednisone and getting physical therapy to regain some strength and to treat tendonitis in my ankle. I am exhausted with moderate activity. I'm told it may take 6 months or more to reach a "new normal," whatever that may be.

Alas, while we feel great on prednisone it's long-term side effects (beyond withdrawal) such as atherosclerosis and bone loss are scary. So if all your docs are sure you aren't flaring and recommend tapering down and bearing with the pain and discomfort - well, you have company!

Hi Max,
When you are on the high dose of pred, do you have your normal energy or do u still have the dreaded vasculitis fatigue?