Cathy Donahue

[Guest guest]

Hello Cathy, and welcome. I'm sorry to hear your dad

has RP, and I can quite understand that you are scared

right now! However it is not necessarily all doom and

gloom. The important thing is it has been diagnosed,

and they will be able to start treating him. I have

probably had rp for years, but was only dx a few years

ago. I had been having severe breathing difficulties

and it was put down as asthma (which I do also have)

and my trache a slightly narrowed. However since I

have been taking methotrexate my symptoms have

improved dramatically, I can breathe better, I dont

end of in the ER all the time! My trachea has

certainly not got any worse, thank the lord! I am 58

and I still work (although not as hard as I used to!)

Tell your dad that they will probably treat him with

immunosuppressants, which can cause problems, but in

general the benefits outweigh the problems. All the

treatments take time to kick in so sometimes you have

to wait, then you find out this med isn't working so

you have to start over, it is not simple to control

it, but it can be done. You will talk to a lot of

people on line who are managing and getting on with

their lives. BTW, my name is Liz, I'm English and I

work in Saudi Arabia, right now we are in California

and enjoying lovely weather! Where are you?

Try and reassure your father that there is life after

a dx of RP! Stick with us for information, jokes and a

bit of complaining - we all feel free to do that!

Love Liz (Cobb)

__________________________________________________

[Guest guest]

Hi Liz,

Good to meet you. We are in Cincinnati, Ohio. Saudi Arabia, how interesting! Dad has been in and out of the hospital the last year and a half with what they kept saying was severe bronchitis. He does have underlying lung trouble so it made sense at the time. His CT scan the other day says his windpipe is about a third of what it should be. Like breathing through a straw. I imagine drugs can't restore what he has lost but I'd like to at least slow it down. We blamed so much on his smoking years ago. Dad will be 78. I already have him taking calcium (someone posted the other day that it was good) and will be glad when we find a doc that knows something. I really appreciate all of the people I have "talked" to here. People like you know more of the day to day stuff than the physicians. Cathy

Cathy Donahue

Hello Cathy, and welcome. I'm sorry to hear your dadhas RP, and I can quite understand that you are scaredright now! However it is not necessarily all doom andgloom. The important thing is it has been diagnosed,and they will be able to start treating him. I haveprobably had rp for years, but was only dx a few yearsago. I had been having severe breathing difficultiesand it was put down as asthma (which I do also have)and my trache a slightly narrowed. However since Ihave been taking methotrexate my symptoms haveimproved dramatically, I can breathe better, I dontend of in the ER all the time! My trachea hascertainly not got any worse, thank the lord! I am 58and I still work (although not as hard as I used to!) Tell your dad that they will probably treat him withimmunosuppressants, which can cause problems, but ingeneral the benefits outweigh the problems. All thetreatments take time to kick in so sometimes you haveto wait, then you find out this med isn't working soyou have to start over, it is not simple to controlit, but it can be done. You will talk to a lot ofpeople on line who are managing and getting on withtheir lives. BTW, my name is Liz, I'm English and Iwork in Saudi Arabia, right now we are in Californiaand enjoying lovely weather! Where are you?Try and reassure your father that there is life aftera dx of RP! Stick with us for information, jokes and abit of complaining - we all feel free to do that! Love Liz (Cobb) __________________________________________________