Samstag

[Guest guest]

Heidi,

I had a flare in my right ear on Oct 23rd so Dr put me

on 60mgs of preds for 3 days, then 40, then, 20. Didnt

go away so they kept me on 20 mgs for 10 more days.

That seemed to help so they had me go down to 5mgs

every other day for 3 wks and then went down to 2 1/2

mgs for every other day which I have been doing for

the last wk. He wants me to keep doing that for 4wks

then he said if everything was ok I could stop the

predizone.

Yes, I have very good insurance. Can go anywhere.

My ruemy is really good and has put me through alot of

blood tests which I cant even remember what they were

all for LOL

Everything came back good. Had a echocardyogram and

that came back good too.

I will call the Dr tomorrow and see what he says. I

will let you all know.

Also, can anyone tell me, I am tired all the time!!!!

Will that ever go away?

Gonna go to bed, talk to you all tomorrow. Please say

pray that this pain will go away so I dont have to up

my preds....... Been on this for 3 months and I know

alot of you have been on it alot longer but I really

was hoping I would just be able to get off it like

before.

Have had RP in both ears and nose once and all those

times was only on Predizone for a short time and it

went away and flares didnt come back for 8months.

This time its sticking around alot longer!!!!!!

Bye for now.

Carol

--- Heidi Main wrote:

> Well it is Saturday and I am hoping everyone is

> having a great Pain Free week end.I am glad

> this day is almost over with. LOL yup, been on the

> run again all day. The youngest Granddaughter had a

> Birthday and the had her

> Party at " Chuckies Chess " . Wow I had never been

> there before and sure hope no one else has one

> there. LOL I am tiered and going to hide out. LOL

>

> , O by the way that is one of my

> granddaughters name too. she is 11 LOL

> Don's Dr. at the Mayo Clinic name is Dr. Moden

> He also was very good with RP too. You know

> I think maybe all of them are. If any of you going

> to go there make sure you tell them you need a Dr.

> that does knows all about RP when you make your

> appointment, OK

>

> Sharon yes everyone does need to take control with

> there Drs. You are paying there salary !!!!! Believe

> me it took quit a while to find the right ones and

> the all can and will work with each other too,

>

> Carol I got a ? for you about the Flare you now

> having. How long have you been on Prednison

> and how high was your High??? Also how fast are you

> lowering the prednison now ??? Now to the Mayo

> Clinic if your Insurance will pay for it I would go.

> But be ready to go true the mill. I mean the will

> check you from head to toe. But to us it was well

> worth it to know Don did not have a underline cause

> for RP. Please let me know if you are planning on

> going there.

>

> Glenda, Don did take off that stupid Picture off his

> website. LOL But he replaced it with another one .

> Gee I cant win LOL

>

> Martha wow you did good I am proud of you

> for doing a post to the group. Yes even true you are

> doing good. Our new members need to hear that so the

> will know there is hope. I do thank you I just wish

> more of our older members would do that also. So I

> guess I have to go and keep after them too. LOL

>

> Well I guess I close for now but one more thing LOL

> Remember Please take your Vitamins and Medicine on

> time everyday so you can get the RP in a sleeping

> mood.

> Sending you all a Gentle hug from Okieland

> Heidi

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__________________________________________________

[Guest guest]

Hi everyone !!!!

Well I am so happy to see so many new names here. So I would like to say "Herzlich Willkommen " to the best support group there is. Pat

could you please tell me where you from ?? Yup, Pat I am the nosey one here. LOL

Hi Joan and Larri gosh I am glad you made it here. It was so nice to talk to the both of you. Joan is from Georgia and Larri is from Missouri.

Now that you all made it here I hope you all let us know all about your self. You finally will learn so much about RP here not even some of your Drs. know that much. And let me tell you um so more you learn the better you can help your self and tell your Drs. RP can be controlled !!!!!

It is my Husband that has this darn RP but he is doing great !!!! Next month he will be one year flare free. Yup, we got his RP in a sleeping mood finally keep praying it is in a deep sleeping mood. This month he is down to 1mg of prednison so next month be zero !!!!! Then in June we will try to lower his Ibuprofen from 800mg 3 x a day to 600mg 3 x a day. We know he will has to be on medicating.He is one of the lucky ones he does not have anything else. Well only a mean wife that makes sure he does take his meds and Vitamins on time everyday. LOL Plus she treated him he be shoot if he has a Flare. LOL Gosh I know how hard it is for each of you that just got the news about RP. But please understand that is NOT a dead sentences and it can be controlled. The trick to that is finding the right combination of medicine.Plus

a team of drs. that are willing to work with you. That part

can be the the hard part

of all.But just remember you ARE PAYING HIS SALARY !!!! So keep looking till you find the right team. Well I guess I hush for now and hope you soon will post. Now if the e mails get to much for you we also have a digest form for you there you get 25 messages at the time only .OK Just holler we be happy to help you.

Remember it is VERY Important that you take your Medicine and Vitamins on time every day so you also can get the RP in a sleeping mood. Love you all

Mrs. Nosey ( Heidi )

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