Post from Hobb

[Guest guest]

Here is a post from Hobb that I received and thought I'd pass it on. I

am also passing on another one with quite a bit of information on it.

Sure do miss , but as you can see, she is one busy lady. I will

continue to shuffle through the archives and re post any of her older posts.

Dear ,

It was nice to hear from you. I'm glad to know that you are doing well with

the docs at Stanford.

I seem to be well-controlled and only need blood tests every 30 days for drug

side effects. My Rheumy says I will have to stay on a maintenance dose of

Cytoxan for as long as I can tolerate it or I will always be waiting for the

proverbial " other shoe to drop. " I am down to 6 mg prednisone and my face

is not so plump anymore but I don't think I will ever look like I did before

RP and pred.

Our whole family is involved in a genetic study of families with multiple

auto-immune problems at University of MN -- MADGC study. Myself, both

daughters and my husband had to give blood and so does one entire family of

first cousins (MS, diabetes and Lupus). They are looking for a gene(s) that

might indicate susceptibility to A-I conditions.

There is also a genetic study starting in France. They are looking for cases

of " familial " RP similar to Marie-Pia's family (all three children have it).

That Lectin stuff is relatively new science -- only being researched in the

last 10-15 years and only now getting much attention. One study said that

plant lectin in fruits and some veggies help to prevent the side effects of

Cytoxan (I did not look for side effects of Methotrexate). Other studies say

that plant lectins cause the A-I conditions that require taking Cytoxan. So

it seems we are damned if we do and damned if we don't.

The possibility that plant lectins are at fault in RP makes me wonder about

that lady who claimed to have cured herself of RP with diet. She may have

found her particular problem, but I think some list members said her diet

didn't work for them.

, go ahead and post anything I ever wrote to the list. I hope there

is nothing there that would change with latest info. I don't think I have

discovered anything new recently. Since my main concern now is drug

side-effects that is what I have been researching. I was disappointed to

learn that Cytoxan side effects can take up to 15 years to appear.

I don't recall if you have any ear symptoms like loss of hearing or

dizzyness. I wrote to Margaret Gray yesterday, explaining about RP and the

inner ear. It is not very well done but it may help some of the other

listers so I am sending it in a separate letter. Margaret said that she

also has a dysfunction of the Eustachian tube (whatever that means) which has

been bothering her for a very long time. ENTs will say that is the only part

of the inner ear that contains cartilage.

Margaret lives about six miles from me and one of these days I will visit

her. I got my Air Force rheumy get a referral to a local rheumy into the

pipeline for her because the folks at army hospital were not helping

her. She had her first visit with a good RP Rheumy on Monday but I have not

heard from her how it went. I hope they refer her to a pulmonologist.

Aside from RP how are things going for you? I hope you are settled into a

nice boring routine now and don't have any little crises to bother you any

more. We had a lot going on over the holidays and I am now playing catch-up.

The house is really quiet since my daughter, her husband, baby granddaughter

and baby's nanny went back to Singapore Jan. 4. I am starting to get my

" princess updates " (i.e. P.U.) from my daughter again. They are emails with

photos and news of baby a.

In July Leo and I will travel to Regina, Saskatchewan, for a conference. I

am going to speak about the rules for recruiting the Austrian army 1740-1914

and what it was like to be an Austrian soldier during two wars in 1864-66. I

have the presentations scripted from a past conference but they want me to

split them into two one-hour sessions each instead of one 90-minute session

and expand the scope a bit. I am not looking forward to working on that.

When I started this I didn't mean to go on for so long....

Regards,