RA & Plaquenil; Road Back

April 27, 2009

Hello All, I am so glad you are out there. I finally gave in and

started taking Plaquenil after a blast taper of prednisone and return of

pain with a vengeance. I have only been taking it for 10 days and the

doctor says to give it 3 mos. I just don't know if I can stand this

level of pain and inflammation for 3 mos only to find out Plaquenil is

not working. I am also taking 7.5 mg of prednisone since the dr. says

Plaquenil takes time to build up in the body. Has anyone experienced

relief with Plaquenil? The dr. says I can try methotrexate, but it is

so much more toxic. I am really bummed out and angry all the time. I

worry about the effect on my husband and children. I have virtually no

patience for them, my poor suffering family, who have done nothing to

deserve my wrath.

I read some of the info on roadback.org and it sounds intriguing. I

plan to call my dr. today to see what she knows about it. Has anyone

tried the antibiotic therapy recommended at roadback.org? Also, I am

seronegative so I am not sure how the dr. would monitor my progress

other than self-reports.

Thank you for your advice. - Beth.

April 27, 2009

Hi beth,

I take plaquenil and I believe it is helping. However, when I first was having

pain and inflammation while I awaited my rheumatology app't. I read " Healing

with Whole Foods " by Pitchford and did an elimination type diet based on his

recommendations. The pain and inflammation were gone in a week. My Rheumy also

said the plaquenil would take 3 months but the diet helped me alot. I do still

take the Plaquenil and have had a flare or two, but I don't want anything

stronger/more toxic either so I stay with this and try dietary changes when I

can/need to.

Hope this helps. Best of luck to you.

________________________________

From: marybethvogt <mbvogt1@...>

Sent: Monday, April 27, 2009 2:22:52 PM

Subject: [ ] RA & Plaquenil; Road Back

Hello All, I am so glad you are out there. I finally gave in and

started taking Plaquenil after a blast taper of prednisone and return of

pain with a vengeance. I have only been taking it for 10 days and the

doctor says to give it 3 mos.. I just don't know if I can stand this

level of pain and inflammation for 3 mos only to find out Plaquenil is

not working. I am also taking 7.5 mg of prednisone since the dr. says

Plaquenil takes time to build up in the body. Has anyone experienced

relief with Plaquenil? The dr. says I can try methotrexate, but it is

so much more toxic. I am really bummed out and angry all the time. I

worry about the effect on my husband and children.. I have virtually no

patience for them, my poor suffering family, who have done nothing to

deserve my wrath.

I read some of the info on roadback.org and it sounds intriguing. I

plan to call my dr. today to see what she knows about it. Has anyone

tried the antibiotic therapy recommended at roadback.org? Also, I am

seronegative so I am not sure how the dr. would monitor my progress

other than self-reports.

Thank you for your advice. - Beth.

April 27, 2009

my friend is on abx therapy and is seronegative and you can tell she's

improving by the lessening of pain and her ability to do much more. she

was headed for a wheelchair when she started. i had 3 wonderful y of

remission on minocycline. make sure you find a good doc who understands

abx therapy. many do not. the road back can give you a doc

recommendation for your area.

monique

April 27, 2009

jane this is not true. many with seronegative RA o well on abx therapy.

as i said you need a doc who understands this therapy as many do not.

monique

I am taking 2 grams of sulfazine, 400 mg of Celebrex and the U of

M doc put me on 400 mg of plaquenil daily. I was told because I am

seronegative (don't have the antibodies the antibiotic would fight

against) I am

not a candidate for antibiotic therapy.

Has anyone out there have any other ideas?

Jane in Michigan

April 27, 2009

for years I was on antibotics, at the time I did not know I had RA, I knew my

hands hurt whenever I wrote anything. I found the more antibotics I took the

more I felt better from the pain in my hands. That was when I was 18. I stayed

on antibotics til I was 21. Not sure which one I was on, If I remember right

one of them was minocycline and the other was zithromax. At this point my body

is in remission and I have not been on the enbrel since october, I had a bad

flare right before my surgery in November which was cured during the surgery

with IV steriods. I haven't had any pain or swelling from it. The most

swelling I have was from a sprained wrist a few weeks ago which is now healed

up. I'm just waiting for the day when I come out of remission and have to go

back on medications again. It feels good not to be a pin cushion right now. I

am also seronegative.

in sweltering land

[ ] Re:RA & Plaquenil; Road Back

my friend is on abx therapy and is seronegative and you can tell she's

improving by the lessening of pain and her ability to do much more. she

was headed for a wheelchair when she started. i had 3 wonderful y of

remission on minocycline. make sure you find a good doc who understands

abx therapy. many do not. the road back can give you a doc

recommendation for your area.

monique

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April 28, 2009

Thank you, . From the Road Back info, it sounds like you can

take abx indefinitely...is this not the case? - Beth

--- In , Sauve <moniquesauve@...>

wrote:

>

> my friend is on abx therapy and is seronegative and you can tell she's

> improving by the lessening of pain and her ability to do much more.

she

> was headed for a wheelchair when she started. i had 3 wonderful y of

> remission on minocycline. make sure you find a good doc who

understands

> abx therapy. many do not. the road back can give you a doc

> recommendation for your area.

>

> monique

>

April 29, 2009

Hi,

I am also seronegative and I was on MTX for six months previously. However, it

did not help so I started taking Minocycline 2x100mg a day. Can't tell you how

much better I felt after leaving MTX. Minocycline is much better than MTX but

there are herxing problems sometimes. I dont feel still in the morning these

days for the past few weeks and its quite a relief.

Arshad

From: wisfam@... <wisfam@...>

Subject: Re: [ ] RA & Plaquenil; Road Back

Date: Monday, April 27, 2009, 11:46 AM

Hi beth,

Welcome to the site. There's so much information presented, feelings and

reactions discussed, truly very helpful.

I too am seronegative, just got my diagnosis end of March and had it

confirmed at the University of Michigan rheumatology clinic three weeks ago

after a really awful winter. The general thought about my condition is (I am

in the mild to moderate classification) is to throw a lot at it early to

prevent any damage to the joints and possibly (oh how I hope) throw me into

remission. I am taking 2 grams of sulfazine, 400 mg of Celebrex and the U of

M doc put me on 400 mg of plaquenil daily. I was told because I am

seronegative (don't have the antibodies the antibiotic would fight against) I am

not a candidate for antibiotic therapy.

Has anyone out there have any other ideas?

Jane in Michigan

In a message dated 4/27/2009 2:32:55 P.M. Eastern Daylight Time,

mbvogt1san (DOT) rr.com writes: