Re: [rheumatic still aching too!

[Guest guest]

Hi Mona,  Yes, the same thing is happening to me and also in my hips,thighs and

lower back.   (But that last part may be due to kidney stone formation!!)  I was

on Mino 100mg twice a day for 18 months and did absolutely wonderful.  Was in

remission when I decided to go on the Marshall Protocol and cut way back on the

Mino.  I, too did not realize that these aches were creeping back up on me.

Added clindamycin (tiny amount), but the aches kept increasing.  Was told it was

IP.  That part wasn't true.  Was taking lots of Benicar to help the IP.  Nothing

happened.  Asked everyone if the it was truly IP or the disease. Got various

answers. My new doc told me to cut way back on the Benicar.  I did.  Still

achy.  Just starting the to introduce the third antibiotic and decided since I

am retired, I can live where I want. I moved away from NY.  The cold was causing

increased achiness also. Went to Texas for a few months, then northern Florida. 

Well, it gets down into the 30's here.  My mom came to live with us as she

developed Alzheimers.  We've had the heat on all winter and am still wearing my

winter coat and hat.  Had enough!  Started looking for a place in Puerto Rico. 

Am purchasing a 3.5 acre spread with a house on it and loaded with tropical

fruit trees. If all goes well, we should be closing by May and moving

in sometime in November.  The house needs some cosmetic work which we will have

done over the summer. Looking forward to spending next winter in the warm

climate and will give you all an update to see if I fare better in the heat.

Meanwhile, I have cut out all Benicar and on three antibiotics.  Still

ramping up on dosages.  We shall see how it goes.  I have scleroderma, R/A &

possibly MCTD according to one of the Rheumy's I've seen in the past.

Cheer up, spring will be here soon.  Hot showers and warm baths sometimes

helps.  Take care, Dolores & Mike 

From: Mona Goldstein <spellers@...>

Subject: Re: rheumatic Return of RA on mino

rheumatic

Date: Thursday, February 12, 2009, 9:19 PM

Actually, I forgot-it did happen to me also. I have reactive arthritis and was

on 200mg a day of Doxycycline for about a year, when I realized that it had

stopped working. Unfortunately, I wasn't very aware that I was getting worse at

first, so the illness started to affect new joints, like my hips. But,thanks to

this group, I was able to ask my rheumy for 200 mgs. of Minocycline instead, and

again, within two weeks, the pain was under control again. I have biggest

problems with my illness during the miserable cold and rainy(this year-snowy)NY

winters and marvel how my illness can vary day to day according to the weather.

I feel great on days when the temperatures are above 35 degrees and the sun is

out and no rain is in the forecast.

I started out with one generic minocycline. When the winter set in and it wasn't

as effective anymore, I tried another generic by the company, and it

definitely worked better. But as the weather got worse and colder, that didn't

work either. Now, I just started 200mg. Minocin and am hoping it'll do the

trick.

Is this common that the A/P stops working? At least there are other antibiotics

to try.

Mona

rheumatic Return of RA on mino

Hi Anne

I had a similar thing happen for me in that in 2006 I began mino

100mg MWF and after a few months all my pain was gone. But it came

back about a year later. I tried different doses and tried having it

daily and it worked for a while but then the inflammation started

again. Like you, I was in awful pain, desperate and beginning to get

deformities. I couldn't take Celebrex or other NSAIDS because of

diverticulitis and didn't want to take prednisone for too long

because I already have quite bad spinal osteoarthritis. So I decided

to try Plaquenil again (which I'd had at the beginning of treatment

before the mino and it didn't work so well), and the combination of

the mino and plaq has done the trick! I've always refused

methotrexate and hope I never have to use it. I still get minor

flitting pains now and then but use paracetamol (acetaminophen)

occasionally for that.

One of the other people on this list said that this combination works

for her too. Also, there was something recently about cysts forming

with some form of mycoplasma infections and that this could

necessitate other types of drugs. Of course, the food sensitivity

connection is important too.

Good luck with staying off the methotrexate and other heavier drugs.

Ros