Tapering off Prednisone

[donnia]

Well... thank God they are tapering me off the Prednisone. I have already alternated 10 and 5 mg for 2 weeks, then 5mg for 2 weeks, now I am alternating 5 and 0. On April 1st I will officially be off. I have heard that it can be very difficult being weaned off, but I have not really had any problems. The only thing I have noticed is that I am retaining a little more fluid in the leg opposite of my transplant side.

For those of you who have been weaned off Prednisone... what have you experienced?

[kellyt]

I was on Prednisone one other time other than now and I had no problems coming off.  At that time I wasn't weaned off the same way you are being weaned off, nor am I being weaned off that way this time.  I'm currently at 10 mg and I drop to 9 mg April 1st.  I will go down 1 mg a month until I hit 5 mg.  At that time he'll assess me and then hopefully continue at 1 mg a month I suspect.

If you aren't experiencing any problems now, I doubt you will.  Congratulations!  I know you're excited to come off of the Prednisone.   Have you been able to lose all your transplant weight?  If so, at what mg of Prednisone did you start noticing the moonface and weight starting to come off?

[Sluff]

Good for you, thats one more move in the right direction.  As for the swelling, I can't help you.

[Beth35]

It's been ten years for me and they never weaned me off.  Why is that?  I thought you had to be on prednisone forever.  I have been on five mg for years now.   

[kellyt]

My post transplant doctor told me that they are finding out that Prednisone isn't alway necessary.  He said there are some hospitals that are advertising "steroid free" transplants.

However, I believe it depends on your match and such.  How close of a match is the kidney, live/cadaveric, etc.  My doctor plans on taking me off totally, but there is always the possibility that he won't be able to.   I'm praying I can be steroid free by the end of the year.

Did you get a live donor?

[pelagia]

I have read some of the papers available on the web about this.  What I am finding is pointing towards successes with prednisone avoidance or rapid discontinuation (over a week or so), but still some questions about the risks associated with a taper that occurs later (prednisone withdrawal).  I guess this means that the longer you stay on prednisone, the more difficult it is to come off.  But, the docs have all the latest info accessible, which tends not to be on the web.  It sounds great and I wish my husband had the option.

[kellyt]

Yeah, "steroid free" probably means what you just said.  You're on it for a week or so and then tapered off.  I think Gail was like that. 

My older friend who transplant about a month after me (he's 75) was tapered off much faster than me due to his calcium levels or something.  By the time I hit 20 mg, he was right behind me.  I can't remember how fast he was coming off.  Maybe 2.5 mg a week.    I was doing 2.5 mg every other week and then sometimes 3 weeks.

[pelagia]

My husband is getting close to his 1 year anniversary and he is still on prednisone.  I am not sure of the dose, and he is off on a trip again.  I think it's still at least 5 mg a day.  What's your dose right now Kellyt?

[Beth35]

No, my kidney was not from a live donor.  Maybe that has something to do with it?  I'll be sure to ask the docs when I go for my pre transplant workup over Spring Break. Maybe things have changed since getting my kidney ten years ago.

[kellyt]

Beth, I think it might have something to do with it, because at my last doctor visit my doctor said "You got a living donor, right?"  He then confirmed the match (3/6).  He then went on to say that his plan is to take me off.  Ask your doctor anyway.  Who knows, right?

Pleagia, I have finally hit 10 mg, but I drop to 9 mg on April 1st.  Down 1 mg a month until I hit 5 mg.  Then he will make his decision.  He's pretty confindent I can come off of it, but if I have to stay at 5 mg then I have to stay at 5 mg.  It will be August when I hit 5 mg and I transplanted in Nov of last year, so I'll be almost at 1 year.  Even if we do taper down from 5 mg I go over my 1 year anniversary.  Let me know what dosage your husband's on.  Also, did he get a living donor?

[chris73]

i had a living donor  and im down to 5mg twice a day..tx coordinator told me i would be on it for ever...am going for yr check-up next week going to ask why that i  will be on it....just curious why i will be on it   

[kellyt]

What is the match of your living donor, Chris?  Mine was a 3/6.

I wish I had asked my doctor more questions when he said all this to me.  I was just so darn excited to possibly not be on it forever I just screamed "Great!"  Everything else he said after that was lost.  I see him on the 7th.  I'll ask again.

[chris73]

will be going  for 1 yr check -up next Monday April,6  will ask then, i think it was 5/6 match if i remember correctly.

[kellyt]

That's a really good match!  Good for you!  Ask your doctor and let me know what he says.  Because I'm at 10 mg now and I transplanted way after you.  I drop to 9 mg on Wed.  Surely you won't stay at 10 mg forever.    Let me know.  You got me curious now.   Good Luck at your 1 year visit.  I hope everything is perfect!

[donnia]

I know some centers are totally against coming completely off.  My friend had her tx 4 years ago from Baylor and is still on 5mg.  I had a live donor (as did she) that was a 3 out of 6 match.  My center likes to take you off at a year but since I am having my hip surgery on April 28th and they will have to be messing with my Rapamune, they went ahead and started tapering me off early (with no complaints from me whatsoever lol). 

What are prednisone withdrawal symptoms....?  I have not heard of this?!?!!??

 

[Sunny]

Prednisone withdrawal symptoms involve EXTREME bone pain and muscle pain.
I was on prednisone for aprox 8 months for treatment for Goodpasture's Disease (an autoimmune disease damaging kidneys or lungs). My highest dose was 80 mg/day tapered to zero at about 8 months. The extent of withdrawal symptoms has something to do with how long you were on it and at what dose. Maybe you won't get withdrawals at all if you've been on a low dose for a short period of time.

[monrein]

I was back to 5 mg within a week, but will be on 5mg forever.  I've been on that low dose for at least the past 20 years and a bit higher (like 10mg) for the 5 years before that.  We don't seem to do totally steroid free here.

[Wenchie58]

I had rejection issues at first so I started at 150 mg a day.  It's been 5 months, I am now on 7.5 a day hoping to move down to 5 soon!

[pelagia]

 
What are prednisone withdrawal symptoms....?  I have not heard of this?!?!!??

My understanding is that prednisone more or less shuts off your adrenal gland among other side effects.  See for example:

http://en.wikipedia.org/wiki/Prednisone

My husband's neph once mentioned the possibility of going on an alternating day on/day off dose.  I thought that sounded strange, but the wiki article mentions that therapy as something that helps to preserve adrenal function.

[kellyt]

Whoo-Hoo!    I drop to 9 mg tomorrow!  I'm sure the weight will just fall off!!!   

If it doesn't (and I know it won't immediately), I might not make it through the Texas summer!  It's only March and I'm sweating like a "bad girl" in church.

[Falkenbach]

I had a live donor transplant in May 2007. I am in my early 30s.

I started on 30 mg a day, and it was weaned down bit by bit over the months. I am down to 1 mg a day. I still have moon face, although everyone tells me it isn't that bad and that I grossly exaggerate it. Apparently it was much worse 12 months ago, but I'm very sensitive about it. I am hoping to be off prednisone all together in a few months' time.

I have had no side effects. After my transplant I did suffer dreadful bone pain, but it appeared to have been in relation to my Cyclosporin (which was changed to sirolimus early on) and hyperparathyroidism. This problem eventually settled down some months after I had a parathyroidectomy (about September 2008).

As prednison is known for causing osteoporosis (which I already had, pre transplant) and diabetes (which runs in my family), I really cannot get off this drug quick enough. I despise the stuff.

[pelagia]

My husband has 2/6 match.  He is in his early 50s.  At 11 months post transplant he is on a prednisone dose of 7.5 and 5 mg on alternating days.  He expects to have his dose dropped again as soon as he hits the one year mark.

[chris73]

I asked the Dr about the prednisone protocol after transplant and she said they didnt have good results with" steroid free" transplant  ,as they taken patients off of it they had rejection episodes and had to continue with prednisone therefore everyone takes it @ the clinic. Also was told i was a 5/6 match and that didnt have anything to do with if i take prednisone or not.... God Bless !!! Chris
 

[kellyt]

Did she mean "they" as in "their clinic/hospital" didn't have good results or "they" as in "the medical world"?

I really hope that I'm able to come off 100%.  My guess is once I hit 5 mg I'll be there for a while and the decrease (if any) will be extremely slow.

However, now that I think about it, as of tomorrow I'm switching back to my regular nephrologist and will only be seen at the transplant clinic once a year.  They said that from now on my regular neph will be in charge of my medication dosing, increase/decrease, refills, etc.  He might not take me off.    I still hope he does, but I'll deal with it if he doesn't.

We just want to keep out kidneys, right Chris73?   

[chris73]

sorry for misunderstanding it was @ Virginia Commonwealth University its was their protocol for  everyone to take prednisone.. and yes that is a small price to pay to be dialysis free and to keep our kidneys functioning ....Chris....kellyt hope your neph can get you off of prednisone