Re: Bob and Daughter, -KAREN

[Guest guest]

Hi ,

I was reading your post to Bob regarding his daughter, . You

are so kind and thoughtful. I'm sure they will both appreciate your

words of hope.

When I read this:

>>>> have major bone loss that I will not be

able to recover the amount I need which is why I feel a wee bit weak

<<<<

I wanted to respond to you directly. I saw my local rheumatologist

last month, and he mentioned a new bone loss drug that will be

available in the coming year. He stated that it has the ability to

grow new bone for people like us. You might want to ask your

rheumatologist. My Dr. and I started gabbing about other stuff and I

forgot to ask the name of the new drug. Anyway, just goes to show

that each new day brings hope.

Hope you're doing well. My trip to Mayo went great and I still

haven't come down out of the clouds.

Love to you and your very special Mom,

(KC)

> Dear Bob,

>

> My name is and I am now 35. My RP started the same way

> 's did. On top of the ear problems I also had severe joint

> pain and chest pain. I was in a wheel chair right before my DX at

age

> 31 and I want you to know it has been a hellish 4 years for my

family

> and me but " we " made it. If I really think about it I should not

ever

> complain because there are many who went many more years then I

with

> no answers, I guess you can say I was a lucky one, only now can I

say

> that. I am not saying I am cured by no means but looking back just

in

> those 4 years I am so thankful (can't believe I am going to say

> this) " for Prednisone, " Enbrel and many other drugs available to

us.

>

> With my ears nothing would work other than Pulse Steroids (1000 mg

a

> day for 3 day's for a total of 3000mg in 3 days). They say the

human

> body can only withstand one pulsing in a life time due to the shock

> it puts on the body and only to be given to those who are young and

> has no eye and or heart problems. Well we had to do it two times in

> four years. At the time for me I thought it was a quick fix as you

> may but nothing else was working or I would become very ill from

some

> of the common med's. Now looking back I feel we did further damage

to

> my bones from the pulsing, I have major bone loss that I will not

be

> able to recover the amount I need which is why I feel a wee bit

weak

> at times and honestly do not know if I would ever allow them to do

> that to me again, as the saying goes " live and learn " and at the

time

> I was told to live 1st then learn, I still can't figure that one

out

> all I know now is " if I only knew then that I know now " !

>

> My life now is 99% back to normal but the pulsing took it's toll on

> me in some other way's, SO when they can tell me no one will ever

get

> this terrible disorder ever again then and only then will my life

be

> complete to 100%. I do not know if has children but I want

> you to know at the time I had a Four year old so my Mom moved in

with

> us and watched over her child and her child's child and almost five

> years later I cant get rid of her! Thank God for Mom's and Dad's

like

> you! (we really don't want you to leave)

>

> What really interest me in you're post about was the fact

> that the Dr's did " 3 surgeries and loads of antibiotics, " why? did

> they detect any form of infection? If so this info could be very

> helpful to some of us. Also I recommend that you join the RP

> Foundation, they provide up to date info as it comes out and helps

> with awareness of RP!

>

> Please hold on to hope with and let her know there are

other

> young chick's who have gone through what she is now and are all

> better now although truth of the matter is time and top notch DR's

in

> the country and most of all " us " and you to support her back to

good

> health. Bob, please keep us updated on you're daughter and know we

> are here not only for but for the whole family if need be.

>

> Best wishes,

> P.

> Golden, CO.