Re: Re: [rheumatic still aching too!For Mona.

[Guest guest]

Hi Mona, this is Dolores.  I am the one with scleroderma.  Mike is my husband

and the one who has supported me thru all the pain and bad times.   We put in

our days with the jobs, kids etc.  Now we are retired.  It is our turn to have

some fun in the sun before we croak!  It is not luck. It was lots of planning. 

Where in NY are you?  What is your diagnosis?  Wished we had met when I was

still living in E. Village.  Take care----The best to you, Dolores & Mike

From: Mona Goldstein <spellersoptonline (DOT) net>

Subject: Re: rheumatic Return of RA on mino

rheumatic@grou ps.com

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

[Guest guest]

Hi, Dolores. I live in West Hempstead, on Long Island. I have reactive

arthritis, which started after I had a bad infection from a laparoscopy, that

wasn't treated properly.

I realize that you guys planned well, but there is a little luck involved, since

obviously, not everyone can enjoy their retirement in the sun. You guys seem

like great people and really deserve this. Let me know if the heat and sun

really makes a difference. I know it changes me from a pained and exhausted

individual to one who's pain free and alive. But, since I have been on

Minocycline last summer, I developed these black scars all over my legs from sun

exposure and can't figure out how to get rid of them. There must be 50 of them

and they are gross. The only explanation I have is that I was heavily bitten

with mosquito bites on my legs when I switched to the minocycline. Any idea how

to make them disappear? Thanks so much.

Keep warm!

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

[Guest guest]

Hi Mona,  I raised my children in Suffolk County, but that seems like another

century ago. Hehe!  It was.  There was a lot of luck involved and my parents

were born there, so there is extended family I plan to get closer to.  As far as

the purple dark marks.  I developed some on my legs.  I got a very dark tan when

I was in P.R. for two months in 2007, but that has mostly faded away.  The part

that I want to work on are the white splotches on the legs and arms. My

covered torso never changed, so I know it was the reaction between the sun and

the tetracycline based Minocin.  I guess just keep covered and in time maybe

they will fade.  I just live with it, but I am older.  When I was younger, I was

much more vain about my appearance.  Living with Scleroderma took 1st place over

vanity.  Us S/D people have facial changes that are harder to live with than

discolorations.  I guess it is all in a prospective view how we categorize

symptoms. 

And also according to age and our social circles.  If I were young, single,

and had competetive friends, I would crawl somewhere & hide.  But I am old and

my husband of almost 34 years thinks I am gorgeous.  I told my friend in London,

that I hid his glasses.  Hehe!  Take care and hope you feel better soon.

Dolores & Mike

From: Mona Goldstein <spellers@optonline . net>

Subject: Re: rheumatic Return of RA on mino

rheumatic@grou ps.com

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