Tapering on predizone

[Robertwgriffinsr]

HI, my name is Bob and I was diagnosed with Wegeners in January 2017. Immediately was put on 80 ml of predizone and 2 weeks later had my 1st IV of Rituxan. The predizone helped right away some but it took a few months before I really started feeling better. Started tapering of the predizone and by July I was down to 10 ml and I had a flare. My Rheumatoligst was out of the country for a month so my GP doctor bumped me back to 40 ml until the Rheumatoligst came back. Symptoms improved almost immediately but now I was back to tapering down from 40 ml again. Also I received 2 more IV of Rituxan after my doctor returned. Know I am down to 8 ml a day and ever since I went below 20 I have been experiencing some pretty strong withdrawal symptoms. The withdrawal symptoms I can live with but the are so close to the same as the flair I am constantly wondering is it the drugs or the disease. Have bloodwork scheduled for the end of the month and should have answers then. My question is has any one else experinced bad withdrawals from the predizone? After some research I have found some people have had these but not from someone that had Wegener's.

[Pete]

Hi Bob,

I’ve not had bad pred withdrawal symptoms because my tapers have been pretty slow. I tapered at (I think - been awhile) 5 mg every two weeks down to 20 mg. From 20 down to 10, I recall going down 1 mg every two weeks. Below 10, it was 1 mg/month. My doc says slower is better as it sometimes takes the adrenal glands awhile to start making enough cortisol again.

[andrew]

Well it could actually be a flare. Can you get bloods/an appointment any earlier than the end of the month? Would be good to know earlier than that if you can. Just to be safe I wouldn't be tapering it any more though.

Oh, and welcome! :thumbsup:

Andrew

[Robertwgriffinsr]

Hi Andrew, I have left a meager with the doctor that I would like to move the bloodwork up to today. I am really hoping for a no it's not a flare and I will just have to deal with the withdrawal symptons. But the not knowing is driving me nuts! I know that some people experince soon real pain and discomfort from tapering off the predizone especially below 10 ml. But I also know that the symptoms I am feeling now are very similar to my last flare in July. My kidney function has improved over the last 4 or 5 months and I really don't want to take a chance of jepardizing them. Thanks for the response and help with getting me up and running on this site again.

[Alysia]

Welcome to the forum, Robert. How long since you got the last rtx ? Are you also on any maintenance meds, except from pred ?

[NatriceRomeo]

Hi Robert. I have a terrible time coming off of prednisone. My body really likes it. It is important to taper off slowly. Prednisone is a horrible and awesome drug. When you start taking it your adrenal glands stop making its own corticosteroids. I think my adrenal glands are super lazy & wont kick back in. I get a really bad headache, lethargic, my joints swell, ect I even get mood changes (scary for my husband). I also have a difficult time distinguishing between a flare and prednisone withdrawals. I can tell because my sinuses act up. I know this probably won’t help. It may help you feel better that your not by yourself though. Good luck.


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[Robertwgriffinsr]

Yes it does help because all I ever got from the doctor is I don’t know why my this is happing but maybe the predizone. I researched tapering off predizone and found out that this can and does happen. Last bloodwork was done over a month ago and inflammation numbers where stable. White blood cell count was a little elevated. In around the middle of June at a doctor visit all numbers where acceptable ranges but by July 1st not the case. So I know things can change pretty fast.

[andrew]

Yes it does help because all I ever got from the doctor is I don’t know why my this is happing but maybe the predizone.

Is this Doc the GP or the rheumatologist? If the rheumatologist then can you find another one that knows more about WG? I went through a couple before I found one that was up to speed.

[Robertwgriffinsr]

She is a Rheumatoligst and she actually has quite a bit of experince with WG. She also has connections at Mayo Clinic in Minnesota. I think what the problem was is we are 80 miles apart and everything was going through emails with her nurse. Just got some results on bloodwork from this afternoon and inflammation markers are up won't have results on the rest until Monday. She did just crank me back up to 40 ml on the predizone and call Monday for more instructions and up date on how I am feeling. I don't think the Rituxan is working for me. Think I will have to switch to the other chemo drug. Don't remember the name right now but we discussed that possibility at my last visit. Think I will go with I am just to dam tough for the Rituxan to work!��

[seied]

I do agree with Andrew.
At the very least, you may want to consider looking for a second opinion.
Your flare up seem to have happened too soon.
It seems to me that your doctor is not managing your remission very carefully.

I was diagnosed in September 2017.
I consulted 2 rheumatologists.
One wanted to taper prednisone quickly and use Rituxan (RTX) infusions.
The other wanted to taper prednisone slowly and use weekly Methotrexate MTX pills. I started at 60mg of prednisone, now I'm on 25mg.

I went MTX route. Around March 2018 I should know if I'm on remission or not.


Best of luck.

Ed.

[andrew]

Think I will go with I am just to dam tough for the Rituxan to work!��

Any tougher and you'd rust :)

Glad your Rheumy has the experience and I hope you start feeling better quickly with the upping of the pred. Nice that you got bloods done too! Keep us updated on how you're doing and don't forget to let us know the results you get on Monday.

[Robertwgriffinsr]

So Seen doc yesterday and going to stop Rituxan and start daily dose of Cytoxan. Can’t seem to get off the prednisone with out a flare. Anyone else gone this route? Anyone experience side effects from Cytoxan?

[Pete]

So Seen doc yesterday and going to stop Rituxan and start daily dose of Cytoxan. Can’t seem to get off the prednisone with out a flare. Anyone else gone this route? Anyone experience side effects from Cytoxan?

I didn’t have any side effects from cytoxan. I took it for about 16 months after disease onset. My dose was 100-150 mg daily by mouth.

When taking cytoxan, be sure to stay well hydrated. Urinate whenever you have the urge. Cytoxan’s metabolites are hard on the bladder. A longer-term side effect can be bladder cancer. It’s 5+ years since my last dose, and I have no issues so far (knocking on wood).

[Robertwgriffinsr]

Thanks Pete! That is encouraging news!

[drz]

I had numerous bladder infections while taking it but scoping of my bladder indicates no signs of cancer seven years later. It can be hard on the bladder though so drinking and voiding often cannot be over done.

[Robertwgriffinsr]

Thanks for sharing your experince. From what I am picking up the biggest danger is from a suppressed immune system. Same on both medications. Rituxan just wasn't getting the job done. When ever I went below 15 ml on prednisone I would have a flare. Anybody have hair loss?

[Pete]

You can combat hair loss with folic acid. Ask your doc about it. I took 1 mg of it daily when I was on methotrexate. I didn’t lose hair, but was coarser. Back to normal now that my only maintenance drug is an annual dose of rituximab.

[Robertwgriffinsr]

Thanks Pete. I will look into the folic acid if it comes down to that.

[Donnak06]

HI, my name is Bob and I was diagnosed with Wegeners in January 2017. Immediately was put on 80 ml of predizone and 2 weeks later had my 1st IV of Rituxan. The predizone helped right away some but it took a few months before I really started feeling better. Started tapering of the predizone and by July I was down to 10 ml and I had a flare. My Rheumatoligst was out of the country for a month so my GP doctor bumped me back to 40 ml until the Rheumatoligst came back. Symptoms improved almost immediately but now I was back to tapering down from 40 ml again. Also I received 2 more IV of Rituxan after my doctor returned. Know I am down to 8 ml a day and ever since I went below 20 I have been experiencing some pretty strong withdrawal symptoms. The withdrawal symptoms I can live with but the are so close to the same as the flair I am constantly wondering is it the drugs or the disease. Have bloodwork scheduled for the end of the month and should have answers then. My question is has any one else experinced bad withdrawals from the predizone? After some research I have found some people have had these but not from someone that had Wegener's.

Hi Bob I had a pretty hard time getting off the pred. Once I got below 20 every time I reduced, and I was only reducing by 1mg, I got headache, like a migraine headache that lasted a couple of days, sinus pain and pressure and felt really tired. It was very similar to a flare and I was also wondering if it was a flare or the steroids but every time my bloods were OK and after a week or so the symptoms disappeared until next time I reduced it. I reduced by 1mg every month once I got to 15mg but I still got these symptoms. It is worth preserving just keep thinking soon you will be off it the end is in sight. Good luck.

Donna

[Robertwgriffinsr]

Thank you Donna for sharing your experinice with me. Doctor just switched me from Ritaxium to Cytoxan. Apparently the Ritaxium wasn't working. Been pretty sick the last few days with stomach problems and head aches. I think it's the Cytoxan. On 100 ml a day. Hopefully it's just temporary.

[Donnak06]

Thank you Donna for sharing your experinice with me. Doctor just switched me from Ritaxium to Cytoxan. Apparently the Ritaxium wasn't working. Been pretty sick the last few days with stomach problems and head aches. I think it's the Cytoxan. On 100 ml a day. Hopefully it's just temporary.

Sorry to hear that I hope you improve. I felt quite sick on Cytoxan tablets but they switched me to infusions which I had once every two to three weeks and I didn't feel sick at all on these. Maybe you could ask about the infusion if you continue to feel sick. You have to go to hospital but only as an out patient and it takes about 3 hours for the infusion.

[Robertwgriffinsr]

Ok want to throw this out there and see if anyone else has had a similar experince. Started of A year ago with 4 IVs of rutixan. 80 ml prednisone. Tapering down on Prednisone but when ever I got below 15 ml I would have symptoms of a flare up and then have to go back to 40 ml and start over. Did this 3 times in the last year even though I was receiveing IVs every 4 to 5 months. Now the doctor has switched me over to Cytoxan 100 ml a day and I am down to 12.5 on the prednisone. WBCs are down some but still in the normal range 9.5. Doctor would like to see this number lower and may have to increase dosage. Anyone else have such a problem trying to get of prednisone?

[NatriceRomeo]

In my experience. The longer your on prednisone the longer it takes to taper off. It’s hard to recognise if the symptoms are associated with prednisone withdrawal and the WGs disease process. At one point it took me over a tear to taper off prednisone & its terrible.


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[Robertwgriffinsr]

Thank you for responding Natrice. That's where I am at now. Been a year now of being on predizone. Up and down and back up and back down! Inflammation markets are all up when having a flare and go back down after prednisone is increased. Wait and see what happens.

[drz]

Many Weggies find they need to remain on a maintenance dosage of pred very long term. The dosage may very but they often end up in the 5-10 mg range and may experience flares while trying to taper down so the goal then is to try get to the lowest maintenance dosage you and and your treating team think is best for you. My doctors have said pred is bad but GPA flares are worse so it can be a balancing act to try find the best numbers for each person. They also remind me that many people besides us Weggies take pred in a maintenance dosage of 5-10 mg for many other health issues without having serious problems from the pred at those lower dosages.

[Robertwgriffinsr]

Thank you for sharing. Think I read once 7.5 ml. or less should not be to harmful.

[seied]

Hi everyone,

I'm off prednisone since last week.
I can't tell if my roving arthritis is a flare up or prednisone withdrawal.

When I was down to 3mg/day I was doing just fine, but from 2mg/day down to none (in one month) I have been experiencing much more fatigue than usual and lots of mild to medium arthritic pains to the point that's gotten very hard for me to walk.

Does anyone know how long does prednisone withdrawal supposed to last? (I started at 60mg/day since 9/2017).

Thanks.

Ed.

[Alysia]

Hi everyone,

I'm off prednisone since last week.
I can't tell if my roving arthritis is a flare up or prednisone withdrawal.

When I was down to 3mg/day I was doing just fine, but from 2mg/day down to none (in one month) I have been experiencing much more fatigue than usual and lots of mild to medium arthritic pains to the point that's gotten very hard for me to walk.

Does anyone know how long does prednisone withdrawal supposed to last? (I started at 60mg/day since 9/2017).

Thanks.

Ed.

I dont know how long pred withdrawal supposed to last. I was never strong enough to continue to taper it down once I got symptoms. I am stuck on 5mg for life.
I guess what you feel is a reaction to the lack of pred. My advice is to go back to the dose where you didnt have symptoms and stay there for a while. I wonder what others think ?
Anyway, please call your dr. and ask him about it.

[NatriceRomeo]

Hi everyone,

I'm off prednisone since last week.
I can't tell if my roving arthritis is a flare up or prednisone withdrawal.

When I was down to 3mg/day I was doing just fine, but from 2mg/day down to none (in one month) I have been experiencing much more fatigue than usual and lots of mild to medium arthritic pains to the point that's gotten very hard for me to walk.

Does anyone know how long does prednisone withdrawal supposed to last? (I started at 60mg/day since 9/2017).

Thanks.

Ed.

I am currently tapering off prednisone myself. I have a terrible time-my body really likes it. I’m going down 1 mg a month.


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[Pete]

I’m almost off the stuff. I’ve been tapering at -0.5 mg/month since last October. I have another month to go. So far, so good. June 22 (or if I run out of pills sooner) will be my first pred free day since 2013.

[seied]

Thanks Alysia, Nat and Pete for your replies.

I'm starting to get slightly better. At least I can walk a little again.
I'm also getting physical therapy 3x/week which helps a lot with these roving arthritic pains.
I think I'm going through prednisone withdrawal and not a relapse (?). It's so scary not knowing for sure.

Fortunately, the monthly labs (CMP, CBC w/diff) came out fine.
I'll get a rheuma factor, sed rate, ANCA panel in a month.
Dr. recommended that I restart taking Pred 3.5 mg/day, but I'll try to hold off as long as the labs remain ok.

I read somewhere that the body produces an equivalent of 5mg of prednisone.
My 1mg/2weeks tapering from 5mg down to zero was a bit cold-turkey and painful.
Perhaps going from 5 to none jump starts the pituitary glands back to work.

Ed.

[seied]

I am currently tapering off prednisone myself. I have a terrible time-my body really likes it. I’m going down 1 mg a month.


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Natrice,

How far have you come?
My 2week/mg until zero was draconian, but I think Mtx is doing it's job because the mini-relapse starting to subside.

Ed.

[NatriceRomeo]

Natrice,

How far have you come?
My 2week/mg until zero was draconian, but I think Mtx is doing it's job because the mini-relapse starting to subside.

Ed.

Hi Ed,
So far I have made it down to 4 mg prednisone a day.. [emoji849]


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[mishb]

It took me 8 months to get from 2mg to 1mg - it was hard and painful and some days I had to take 5mg just to help settle things down (by some days I mean, probably once a month)
I have now been on 1mg for the past 2 years and according to my Rheumy, I will not come off it. Although he once said that I would never get lower than 5mg
Apparently, 1 or 2mg is the top up that my adrenals need, to keep on top of the WG pains. I'm fine with that.

Good luck to everyone currently trying to reduce.......Remember, don't be in a hurry, slow and slower does it :thumbsup: