Hobb posts #2

[Guest guest]

Here is another post I received from . Hope you all enjoy her

information as much as I do. She told me earlier that she would be love to

hear from any one in the group.

,

I visited the RP foundations site, did only a quick scan of what was there

but did not see anything about some of the research that indicates that

tissues containing collagen II and collagen IX are the ones that the

antibodies will attack. Cartilage contains a lot of collagen so it is the

main " victim " . But there are also non-cartilage tissues that can become

inflammed if they contain collagen II or collagen IX. Patients should not

let a doctor pooh pooh symptoms in the inner ear or at any other site of

inflammation because there is " no cartilage there. " When the doctor can say

for sure that none of the tissue in the inflamed area has no collagen II or

collagen IX that would be the only assurance a patient could have that the

problem is not RP related.

There is probably a lot of research out there now that pinpoints the two

collagens as the targets of RP antibodies.

Is Marie-Pia Gayraud on the list? She has been in touch with me because she

can write in French when she is too exhausted to write in English. Her

French doctors really screwed up with her two older children. I hope the

younger one does not face the same problems. She has not mentioned him

lately.

The oldest child is a pretty girl named Coralie and she is 13, maybe 14.

She keeps flaring and for three years they used nothing but NSAIDs. She had

one life-threatening incident that kept her in hospital for three months!!

They finally contacted Dr. Trentham and he suggested pulse prednisone which

they did and finally got the flares under control.

I finally got the name of a doctor in Paris who had trained at the vasculitis

research clinic at 's Hopkins and after that Marie-Pia's doctors finally

put Coralie on prednisone -- 60 mg a day. I don't know if they consulted

with him (she lives in Lyon) but I suspect they probably did because they

told M-P that they " finally understood this disease. "

But they waited to start Coralie on Imuran (their choice of

immuno-suppressant) to see if the prednisone would work by itself first.

They finally started her on Imuran and then decreased the prednisone to 40

mg. Coralie ended up in the hospital again. They had to give her three days

of pulse prednisone to stop the flare.

About the same time they did a scan of 11 year old 's neck and found

that all the thyroid cartilage and the Hyoid cartilage was gone -- completely

disappeared and his larynx could collapse. They are afraid to do

reconstructive surgery because it could trigger a flare....

They had been treating him with " pediatric doses of NSAIDs " too, if and when

they detected a flare but they had never done any of the baseline scans or

MRI that they should have done. Now they have decided to hospitalize

for three days of pulse prednisone, too, but they say, " when it is

convenient " -- not urgent!! I can't believe these guys!!

I told Marie-Pia about how some of the list members were using Enbrel and

they reported that it was helpful. She said her doctor said it was not

available in France but I found out it is distributed there and gave her the

Paris address for it. Do you have any more information about whether or not

it is helping patients on the list? It would be very helpful if those who

are taking it gave Marie-Pia some input to pass on to her doctors. If she is

not on the list, I could send any collection of messages to her. In

particular it would be helpful if the doctors who are using it had Edresses

or FAX numbers so M-Ps docs could contact them. If your list members don't

want to publish that kind of information on the list, please ask them to

contact me privately.

There are some warnings about some very rare side effects of Enbrel at the

Immurex Enbrel web site. If those who are taking it are unaware of these

recent findings, they should look at the site.

I think that one family like Marie-Pia's with three young children who have

had RP for several years has got to be a world record. First for pediatric

cases and second for three in one family at the same time. M-P said there is

one doctor who may want to test for a gene. I sure hope that the docs get

their act together and get the children's flares under control.

Did I tell you that our whole family, Leo, me, my two sisters and both my

daughters have sent in blood to the MAGDC study at university of MN? It is

because my daughter, a sister and I all had thyroid disease (Hashimotos) and

then I got RP and PolyArteritis and Celeste got AI MS....we are a multiple

auto-immune condition family. The people in charge of the study believe

that Hashimoto's tyroiditis patients have a significant number of cases of

other AI problems as they get older and they are looking for a gene that

links the two.

I think the study is still going on and if any list members are interested in

giving blood they will have to try to get immediate family members to do it

too. Here is the study info:

Contact Name: Jill Novitzke, RN MADGC Study

E-mail 1: novit001@...

Notes:

n:Novitzke, RN;Jill

tel;fax:

tel;work:Toll free 1-

x-mozilla-html:FALSE

url:http://www.madgc.org

org:University of Minnesota;Medicine/Rheumatology

title:Research Coord

I think I sent Heidi a message some time ago that a San Francisco research

group found the Lupus gene.

Thinking of you guys.....