Re: I'm Still Here-Carol G.

[Guest guest]

Carol G.

Hang in there! We are all here for you when ever you need us. Gosh it sounds like RP has decided to set in and set in good. Please try to stay in touch..but if you don't we will understand. I am sending good thoughts and prayers your way that this next go round will work...and fast!

Lots of love

Glenda

[Guest guest]

Hi Glenda,

I wanted to say thanks for the encouragement, and I'm still waiting for this medicine to decide what it's going to do, every hour is different - now both my ears are starting up, with a black and blue, painful chest! (Between that and 10 lbs I've gained, I'm glad I have no desire to get into my swimsuit!) Anyway, I've been noticing that you and I seem to have some things in common... the blood pressure and the sweats. I have determined for sure that the BP is from the Prednisone, I'm still on 40mg in the morning, and twice at the Dr. office I've had appts just before I was due to take my Pred - those BPs were both 120/60. Then later in the mornings and throughout the rest of the day, my readings at home are around 145/90. I can't remember, are you taking Pred? The sweats are terrible at night, like yours, but I get flushes and sweats during the day too. I've been on the highest dose of estrogen replacement for over a year (before I knew about RP) because of hysterectomy, and the symptoms had been controlled until all this started happening. So I don't know if it's the disease or the medicine - but for me they're both horrible. There may be something to be said for hormones in all of this, and this part about the lysosomal enzymes that I'm still looking into (sometimes I think I try to pretend I have an MD after my name too hard!). I keep saying this would be really interesting if it were happening to someone else!

Well, I'm still waiting for the results of the chest and neck CT and chest x ray I had done yesterday. I hope you've gotten yours and are willing to share what you've learned. I'm praying it's news that will ease your mind, and that you are feeling better already!

Stay in touch, we all care very much,

Carol G

P.S. I LOVE your jewelry picture!!!

Re: I'm Still Here-Carol G.

Carol G.

Hang in there! We are all here for you when ever you need us. Gosh it sounds like RP has decided to set in and set in good. Please try to stay in touch..but if you don't we will understand. I am sending good thoughts and prayers your way that this next go round will work...and fast!

Lots of love

Glenda

DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Carol G.

Glad you are still hanging in there! ) My flare is in my nasal area. I think today it feels like it is getting better or at least the pain is more bearable!LOL I am on 25mg of pred. and going down. I am going down by 5mg's everyother day. Hope you too get to feeling better.

Lots of love

Glenda