?? For Transplanters

[Guest guest]

Ken is 2 months post transplant.

Has anyone gotten a skin rash? Isn't bold, but is small, raised

and light red - all over chest and back (haven't looked anywhere else).

No new meds or foods in at least 2-3 weeks. We came home for the weekend and I'm

clueless. Don't want to call the

coordinator - being a holiday and all, but don't want to take a risk of it

being anything important either.

Any ideas out there?

With love, Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

Hi Barb;

Could it possible be shingles?

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

I'm wondering whether it could be reactivation of Herpes zoster virus,

if he had it earlier?

Best regards,

Dave

(father of (22); PSC 07/03; UC 08/03)

[Guest guest]

Barb

It's hard to figure out a rash in the best of situations. But here we

have a situation where he could be on 10 differnt meds and is

immuinosuppressed. It could be medications, even after 3 weeks. It

could be a viral illness but probably not shingles as it is on both

sides of the body. It could also be a fungal rash if more toward the

arm pits and groin.

I would run it by his team as they have his medication list. You

could email them a digital picture. I emailed my transplant team

pictures of my wound healing because I was so far away. There would

be some urgency if he is also feeling sicker.

I hope this is turns out to be a minor problem

>

> Ken is 2 months post transplant.

>

> Has anyone gotten a skin rash? Isn't bold, but is small, raised and

> light red - all over chest and back (haven't looked anywhere

else).

>

> No new meds or foods in at least 2-3 weeks. We came home for the

> weekend and I'm clueless. Don't want to call the coordinator -

being a

> holiday and all, but don't want to take a risk of it being anything

> important either.

>

> Any ideas out there?

>

> With love, Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>

[Guest guest]

Barb Henshaw wrote:

>

>

>

> Has anyone gotten a skin rash? Isn't bold, but is small, raised and

> light red - all over chest and back (haven't looked anywhere else).

>

I had a rash that sounds similar to that, and I think it was around two

months post tx. It was mostly on my arms at first, but then it mostly

went away, and began popping up in small patches (just three or four

small bumps) in random places. I thought it was poison ivy at first,

because I'd pulled a bunch out a few days before (I usually don't get

it), but it never really got very itchy like poison ivy does, and then

like I say it started moving around at random. I never did find out for

sure what it was, but the doctors didn't seem to concerned (of course

they never saw it when it was at it's worst).

athan

[Guest guest]

It’s

not shingles. Kim had that as a child (before she got chicken pox!) so I know what that

looks like, besides this is all over his chest & back not just one sided. I’ve calmed down some now, I’ll

start worrying again IF he gets a temp.

But…. he gets a temp every morning, so guess tomorrow I’ll

be back at it.

Thanks , as

always, you’re right there to help anyone in need.

With love, Barb in Texas - Together in the Fight,

Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in

Dallas

[Guest guest]

-----Original

Message----- On Behalf Of jumputah

It's hard to figure out a rash in the best of situations. But here we have a situation where he could be on 10 different

meds and is immuinosuppressed. I would run it by his team

as they have his medication list.

Ken is on: Neoral, CellCept, Prednisolone (2.5mg),

Atenolol, Norvasc, Protonix, Magnesium, Aspirin, Folic Acid, Nystatin, Multivitamin

& Calcium/D – all of which he has been taking since tx on June 30 (2

months ago) – Neomycin & Lovenox were both started when they found

the blood clot, but he’s been taking those for several weeks, so I doubt

they are causing the rash. Guess we’ll

just wait until Tuesday, as he doesn’t want me to call the coordinator.

Thanks for your input,

With love, Barb in Texas - Together in the Fight, Whatever it Takes!

Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

[Guest guest]

The many times I have been on Prednisone..

I have developed a strange rash...on my neck, my legs, painful patchy

rough spots...they lasted for a few weeks...then disappeared after the

Prednisone was out of my system..

This always happens when Iam on Prednisone

" generic Prilosec " also gave me a vicious rash on my face..almost burn

like..painful..it went away when I went back on the name

brand " Prilosec " . (maybe Protonix?). Could they be similar chemically?

(Just a guess).

Hoping that Ken gets over this hurdle quickly!

Andi

>

> -----Original Message----- On Behalf Of jumputah

> It's hard to figure out a rash in the best of situations. But here we

> have a situation where he could be on 10 different meds and is

> immuinosuppressed. I would run it by his team as they have his

> medication list.

> Ken is on: Neoral, CellCept, Prednisolone (2.5mg), Atenolol, Norvasc,

> Protonix, Magnesium, Aspirin, Folic Acid, Nystatin, Multivitamin &

> Calcium/D - all of which he has been taking since tx on June 30 (2

> months ago) - Neomycin & Lovenox were both started when they found the

> blood clot, but he's been taking those for several weeks, so I doubt

> they are causing the rash. Guess we'll just wait until Tuesday, as he

> doesn't want me to call the coordinator.

> Thanks for your input,

> With love, Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>

[Guest guest]

Ellen and I were at another conference of the Israel Association for

the Study of the Liver today. This one was titled Cholestatic Liver

Disorders, so it was right in our field of interest. We were

supposed to hand out the hebrew translation of the PSC support

brochure and try to get the assembled hepatologists and

gastroenterologists interested in our cause. Ellen dealt with that

stuff most off the time and I went to the lectures instead.

During the lecture about Urso, professor Weiss mentioned that one

negative aspect of Urso is that it can cause rashes in interaction

with other medications.

The only other mention of rashes in connection with cholestatic

disease and transplants was in a presentation by Dr. Shivolet about

GVHD, which I certainly hope is not Ken's case.

As is to be expected most of the lectures went straight over my

head, but I am happy I could be there. I learned a lot, and I also

learned that there still is a lot to learn....

The guest speaker was Prof. Gershwin from UC , he spoke about

PBC.

An interesting tidbit is that the subject of MRCP in Israel is still

not largely implemented. Why? Apperently for a good picture of the

biliary tree a certain contrast is needed that contains a lot of

iron. This contrast is not yet approved by the Israeli FDA, and thus

they use..... blue berry juice (which has a high iron content).

During the panel discussions there was a hefty discussion about

whether ERCP should be used as a diagnostic tool, or only as a

therapy. THe consensus was that ERCP should be avoided as much as

possible for PSC patients due to the dangers of infections. ERCP

should only be used for dillatation and brushings. There also was a

case study about a PSC patient and the panel discussion was about

whether or not he should be listed for a transplant.

As I said, it was a great conference, even though problably 75% of

the material went straight over my head. It makes me even more

determined to go to Florida next May and go to a three day

conference about PSC only, and in the process meet other PSC

patients.

Since the slidehows were in english and the presentations in hebrew,

Ellen tried to get the presentations to share with you guys.

Unfortunately, the representative of the IsASL told us that it was

once decided that that was out of the question. We tried though.

In the mean time the Israeli Hepatitis Association has agreed to

accept the PSC support group in Israel as one of their branches. It

gives us some clout and a place to turn to if we need anything. If

we get big enough we can always decide to go seperate ways.

Sorry for the length of the post....

Ellen and Chaim Boermeester, Israel.

>

> Ken is 2 months post transplant.

>

> Has anyone gotten a skin rash? Isn't bold, but is small, raised

and

> light red - all over chest and back (haven't looked anywhere

else).

>

> No new meds or foods in at least 2-3 weeks. We came home for the

> weekend and I'm clueless. Don't want to call the coordinator -

being a

> holiday and all, but don't want to take a risk of it being anything

> important either.

>

> Any ideas out there?

>

> With love, Barb in Texas - Together in the Fight, Whatever it

Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>

[Guest guest]

How do I obtain information on the PSC conference in Florida, next May? I would love to attend. thank you.e_boermeester wrote: Ellen and I were at another conference of the Israel Association for the Study of the Liver today. This one was titled Cholestatic Liver Disorders, so it was right in our field of interest. We were supposed to hand out the hebrew translation of the PSC support brochure and try to get the assembled hepatologists and gastroenterologists

interested in our cause. Ellen dealt with that stuff most off the time and I went to the lectures instead.During the lecture about Urso, professor Weiss mentioned that one negative aspect of Urso is that it can cause rashes in interaction with other medications.The only other mention of rashes in connection with cholestatic disease and transplants was in a presentation by Dr. Shivolet about GVHD, which I certainly hope is not Ken's case.As is to be expected most of the lectures went straight over my head, but I am happy I could be there. I learned a lot, and I also learned that there still is a lot to learn....The guest speaker was Prof. Gershwin from UC , he spoke about PBC.An interesting tidbit is that the subject of MRCP in Israel is still not largely implemented. Why? Apperently for a good picture of the biliary tree a certain contrast is needed that contains a lot of iron. This

contrast is not yet approved by the Israeli FDA, and thus they use..... blue berry juice (which has a high iron content).During the panel discussions there was a hefty discussion about whether ERCP should be used as a diagnostic tool, or only as a therapy. THe consensus was that ERCP should be avoided as much as possible for PSC patients due to the dangers of infections. ERCP should only be used for dillatation and brushings. There also was a case study about a PSC patient and the panel discussion was about whether or not he should be listed for a transplant.As I said, it was a great conference, even though problably 75% of the material went straight over my head. It makes me even more determined to go to Florida next May and go to a three day conference about PSC only, and in the process meet other PSC patients.Since the slidehows were in english and the presentations in hebrew, Ellen tried to get the

presentations to share with you guys. Unfortunately, the representative of the IsASL told us that it was once decided that that was out of the question. We tried though.In the mean time the Israeli Hepatitis Association has agreed to accept the PSC support group in Israel as one of their branches. It gives us some clout and a place to turn to if we need anything. If we get big enough we can always decide to go seperate ways.Sorry for the length of the post....Ellen and Chaim Boermeester, Israel.>> Ken is 2 months post transplant. > > Has anyone gotten a skin rash? Isn't bold, but is small, raised and> light red - all over chest and back (haven't looked anywhere else). > > No new meds or foods in at least 2-3 weeks. We

came home for the> weekend and I'm clueless. Don't want to call the coordinator - being a> holiday and all, but don't want to take a risk of it being anything> important either. > > Any ideas out there? > > With love, Barb in Texas - Together in the Fight, Whatever it Takes!> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas>

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[Guest guest]

Sounds like it could be steroid acne.

When Quantell had it he was prescribed a benzoperoxide ointment with

erythromycin mixed it. I'm not sure it made it heal faster or better

(he still has scars) but it did stop the itching.

The attending told the residents that a distinctive characteristic of

a steroid rash is that all the bumps are the same size and shape

(unlike regular acne, which is more irregular).

There's a photo here:

http://www.nhlbi.nih.gov/about/naepp/

Pam

mom to Quantell, 17, dx 1996, tx 2001, dx recurrence with AIH

overlap, 2006

>

> Ken is 2 months post transplant.

>

> Has anyone gotten a skin rash? Isn't bold, but is small, raised and

> light red - all over chest and back (haven't looked anywhere

else).

>

> No new meds or foods in at least 2-3 weeks. We came home for the

> weekend and I'm clueless. Don't want to call the coordinator -

being a

> holiday and all, but don't want to take a risk of it being anything

> important either.

>

> Any ideas out there?

>

> With love, Barb in Texas - Together in the Fight, Whatever it Takes!

> Son Ken (33) UC 91 - PSC 99 - Tx 6/21 & 6/30/07 @ Baylor in Dallas

>