Re: Dr. Bergasa

[Guest guest]

Hi ;

I'm sorry to hear about Noah's itching and headaches.

I think Joanne's son, Todd, went to see Dr. Bergasa if I recall

correctly?

Sorry, I'm a bit confused about what has been tried already. Wasn't

Noah on rifampin a while ago ... did he stop taking it ... and are they

now trying it again? Or has rifampin just stopped working for him?

Best regards,

Dave

(father of (21); PSC 07/03; UC 08/03)

[Guest guest]

,

He is still taking rifampin, but I think

it is just not doing the trick anymore.

L

He was miserable over the break. He is getting very little

sleep because of the itching. It took me a while to figure it out. He needs

someone to sleep with him to scratch his back during the night. He says that

does help.

Mom of Zoe

(13) super soccer player;

Noah (9) UC,

PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5)

moderately-severely hearing impaired great basketball shot (10-foot

hoop none-the-less)

[Guest guest]

I get nightly headaches as well unless I drink a lot of water. I usually

have 2 bottles of water on my night stand so when I wake up I can easily

drink some water. This seems to help a lot with the headaches.

>And the new symptom is a nightly headache.

>

>

>

>

>

>

>

>Mom of Zoe (13) super soccer player;

>

>Noah (9) UC, PSC, enthesopathy and osteopenia and a great soccer and

>basketball player and;

>

>Aidan (5) moderately-severely hearing impaired great basketball shot

>(10-foot hoop none-the-less)

>

>

>

_________________________________________________________________

The MSN Entertainment Guide to Golden Globes is here. Get all the scoop.

http://tv.msn.com/tv/globes2007/?icid=nctagline2

[Guest guest]

Hi ;

It's a bit of a mystery as to why rifampin should suddenly stop

working. I vaguely recall that Tim R. also experienced this. Perhaps

Tim might have some thoughts on why this may happen .... did it

coincide with a vitamin deficiency, or change of diet?

I hope that Noah finds some relief soon.

Best regards,

Dave R.

>

> ,

>

> He is still taking rifampin, but I think it is just not doing the

trick anymore.

>

> :-( He was miserable over the break. He is getting very little

sleep because of the itching. It took me a while to figure it out.

He needs someone to sleep with him to scratch his back during the

night. He says that does help.

[Guest guest]

Hi ,

I just read your post. I know how awful Noah feels. I have been itching nonstop for 5 years! Fortunately/unfortunately I developed chronic hives in August (they are still here) and a dermatologist recommended UV light therapy which is essentially a tanning bed (minus the tan). I have been doing this for about a month and a half now, and my itching has almost disappeared. I read about this in a previous post (I think from MizKit) and she said it worked for her. It might be worth a try.

Take care,

a

Dr. Bergasa

Did someone here go up and see Dr. Bergasa? I am asking because today Noah was referred to a neurologist for his itching, and I feel like they are chasing their tails. The only thing they have tried is rifampin and they are not even waiting for his bile acids to come back to do this.

I am somewhat confused, and frustrated. They said they expect the BA to be high. Are they thinking that they can’t or don’t feel comfortable prescribing something stronger? I don’t know what to think. Any ideas?

I am getting a little frustrated with this whole thing. Noah’s quality of life is in the crapper. He still says the “little men are in the bed climbing all over him.” And the new symptom is a nightly headache.

Mom of Zoe (13) super soccer player;

Noah (9) UC, PSC, enthesopathy and osteopenia and a great soccer and basketball player and;

Aidan (5) moderately-severely hearing impaired great basketball shot (10-foot hoop none-the-less)

[Guest guest]

,

I have taken rifampin and seen it decrease in effectiveness. Even

increasing the dosage has not eliminated the itching as the original

prescription did. As far as an explanation why, the best I can come up

with is that gradually the liver's capacity to metabolize decreases

and whatever it is that contributes to the itch doesn't get removed

fast enough, even with rifampin speeding up the process, to prevent

the itching from breaking through.

I am in complete agreement with Dr. Bergasa that pruritis (itching) is

a complex phenomena. She has studied the effects on the central

nervous system of naltraxone (sp?) an opiate antagonist. I have tried

it but it didn't work well for me, so I'm not a big fan of it. But it

may very well be an important part of the itching puzzle.

You mention scratching Noah's back during the night to give him some

relief and to let him rest. My wife graciously does that for me.

Although we call it " scratching my back " , it is really very light

caresses, just above the threshhold of detection, done not when I am

actually itching (usually ankles, hands, arms or feet) but across my

back. This redirects my attention away from the incessant itching and

lets me drift off to sleep. If I try to do the same thing to myself, I

find I don't have the self control to stay away from actually

scratching the itches, aggravating them. I find the best policy if I

have to sleep alone is to not start scratching. Something easier to

say that to always follow through on.

Tim R, ltx 1998, just out of a 2 night club Med visit due to bacterial

cholangitis for the first time in 3 years.

> He is still taking rifampin, but I think it is just not doing the

trick anymore.

>

> :-( He was miserable over the break. He is getting very little

> sleep because of the itching. It took me a while to figure it out.

> He needs someone to sleep with him to scratch his back during the

> night. He says that does help.

>