another question from the new one

[Guest guest]

Hi Guys,

Thanks for making me feel so welcome. I wanted to say that I do not know if I am getting treated properly for RP. When I went to ER on Sat. they put me on Augmentin. When I saw the ENT doc he told me to keep taking it but I had RP and to see my Rheumy. Saw Rheumy and he told me to stay on the antibiotic and put me on colchicine, a gout medication? He said if that didn't work he would put me on prednisone. I am so confused! Anyone take this medication? What do you guys do for the pain? After reading Dr Trentham's articles--I am horrified!

Thanks, Sharon

[Guest guest]

Sharon, please don't let Dr. T's article scare you. We were all scared to

death when we read it. Thought our lives would soon end. That is not the

case. RP is controlable with the right medications. It's just finding the

right one for you. We are all different and have different symptoms and are

on different meds.

They kept me on the antibiotic too but I was on the pred also. I think you

would be safe taking an anti inflamatory med but check with your doctor. You

want the inflamation to go down. That is what the pred does. I was given a

high dose of 80mg to knock it out. Then i tapered off of it.

I'm not sure about the drug you were given. I think there are a few on it in

the group. I don't know anything about it, but if it is like the others, it

will take a while to build up in your system. I would check into short term

use of pred. Just my opinion. I will look up your medication and send you

what I find out.

hugs

[Guest guest]

In a message dated 3/20/02 12:20:41 PM Pacific Standard Time,

biglou5685@... writes:

<< I take Ultram for pain, it works well for me. >>

Sharon, I also take Ultram.

[Guest guest]

HI Sharon, Welcome to this great group of people.

I hate you had to find us but if you need us, your in the right place. These folks know much more than the doctors because they can tell you from experience. Which is much more valuable information.

My name is Lu, I will try to write more later, again welcome.

take care,

Lu

[Guest guest]

Hi Sharon,

Welcome to the RP list. I have not taken Colchicine. I am on Cytoxan and Prednisone.

I take Ultram for pain, it works well for me.

Sandy

Hi Guys, Thanks for making me feel so welcome. I wanted to say that I do not know if I am getting treated properly for RP. When I went to ER on Sat. they put me on Augmentin. When I saw the ENT doc he told me to keep taking it but I had RP and to see my Rheumy. Saw Rheumy and he told me to stay on the antibiotic and put me on colchicine, a gout medication? He said if that didn't work he would put me on prednisone. I am so confused! Anyone take this medication? What do you guys do for the pain? After reading Dr Trentham's articles--I am horrified! Thanks, Sharon 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]

In a message dated 3/20/02 8:03:12 PM Pacific Standard Time,

catherk@... writes:

<< . My pred is now down to 5/1 mg alternate days- and I hope to keep going

lower. >>

Kathy, my PCP recommended alternate days. How do you work yours? 5 one day

1mg the next? Then do you go to 4mg/1mg/. Just wondering.

[Guest guest]

After reading Dr Trentham's articles--I am horrified!

Thanks, Sharon

Don't read them, most of them are outdated anyway. We are going to take care of you and give you the best advise we can.

take care

Lu

[Guest guest]

Hi Sharon, I started out in the same mess 2 years ago. (My how time flies when we're having fun!) Except they thought the ear infection was from a new piercing. Glad I didn't pierce my belly button!- After nine months of antibiotics the ENT thought of RP and did a biopsy, sad part was, my ear was shot. Then the other ear started to bother me- at first I thought it was sympathy pain- then thought maybe the infection was transferred by my earrings- NOT! I too was really scared when I read the article. I still am sometimes- guess I do very well at feeling sorry for myself. Anyways- the worst I've had to suffer, along with all the time in Dr's offices, is the meds and the weight gain. I also started on 80 mgs of pred, then they added dapsone (this is for leprosy also- gives the pharmacists the giggles) and then added colchicine. I can't say what's done what, except that the prednisone stopped the terrific pain and my left ear is no where near as deteriorated as my right ear. My pred is now down to 5/1 mg alternate days- and I hope to keep going lower. As everyone keeps saying, we're all different. The meds act as different on each of us as much as the disease does. So, after being so long winded, I guess the moral is, I thought I'd die, soon, and here I am, kicking my way through each day !!!!!! Good luck to you, and keep up with everyone here, they are a great group of people!!! Kathy

another question from the new oneHi Guys, Thanks for making me feel so welcome. I wanted to say that I do not know if I am getting treated properly for RP. When I went to ER on Sat. they put me on Augmentin. When I saw the ENT doc he told me to keep taking it but I had RP and to see my Rheumy. Saw Rheumy and he told me to stay on the antibiotic and put me on colchicine, a gout medication? He said if that didn't work he would put me on prednisone. I am so confused! Anyone take this medication? What do you guys do for the pain? After reading Dr Trentham's articles--I am horrified! Thanks, Sharon 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