Re: phasing off prednisone

[Guest guest]

Arne,

Thanks a lot for that explanation. It explained a lot of things.

When we saw the GI the last time, he mentioned that tapering from 30

to20 or there abouts is not a problem but that tapering off around 10,

5, 2.5 mg is a problem and so told us first to do two weeks of 5 then

4 weeks of 2.5mg/dy. What you wrote about what your pulmonologist

said explains it. When we go to meet the doctor, I go prepared with

questions ans ask a lot and my husband and son ask practically nothing

so somethimes it is like I am a bother. The GI even jokes and says

that he knows he should be on top and that he makes a blinder, I will

get him. So sometimes I try not to say too much. Both my husband

and I are scientists. However he is with plants, insects (he is a

chemical ecologist) and I am in physiology and neuroscience and so

what I don't know offhand regarding physiology, metabolism, etc,in

humans and other animals, I feel i should know so check or ask and

that makes me questioning too much, I guess.

Rita

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[Guest guest]

I have been slowly decreasing my prednisone at a much slower rate. I get blood tests every two months and if every thing looks good, I get to subtract 1 mg. My Dr. always says he is being very cautious and it has worked out for me. I do get impatient to get off the stuff but it has taken 2 years to phase down. Now I'm on 2 mg and hope to be off by summer. I figure better slow than sick

MizKit

[Guest guest]

-,

Yesterday my son had 3-4 bowel movements which were loose. I told him

it is possible that this is due to the prednisone. I wanted to send

the doctor an email today (easier to get answers when I do that than

when I try to call). He wants me to wait till Monday. For so long

his bowel movement was once a day and normal such that 1-2 times a

week of about 3 loose stools in the last month is uncommon. I am

presently at odds with my husband who feels I am hooked on this PSC

stuff and that the doctor said our son is a rare case with possible

overlap with autoimmune hepatitis and also may have Gilbert's

syndrome. Yesterday when I mentioned that tapering off the prednisome

may be affecting his colitis. He said he thought the prednisone and

azathioprine were purposely for the PSC and not colitis so how can

they be affecting it. I don't mean to be complaining here but if I

wouldn't be asking question when we see the doctor or checking

information, there is so much we would have missed. I guess I am p.....

Rita

[Guest guest]

,

My son started the azathioprine in November at 50 mg. In January the

dose was changed to 62.5 and that is the current dose.

Rita

[Guest guest]

,

Thanks for understanding. I know that I constantly check and go after

my son to eat (he's always found eating a bother), check if he's taken

his meds, and look out for anything I feel can help him along so that

he can be asymtomatic for a very long time. My husband says the doctor

said he may have mild PSC (I can't remember him saying that)and that

our son is doing alright and I have decided that it is PSC and think

only of that. Perhaps I worry too much but I try to always look out

for him and so I go out and buy Boost(which he willingly drinks). I

got him multivite, fish oil , calcium and folic acid.I read about

these and asked the doctor about them. He didn't mention that he

needed any supplements until I brought up the subject after we had

seen him a few times. And so I am pissed because I may be too much

into his disease but without me doing what I have been doing, we would

just go to the doctor and come home and not know which direction we

were going. I have sent a message off to the doctor today to inform

him about his diarrhea and even if I get in the bad books of my son

and my husband, I know I have done what sounds best.

Rita