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,

 

You and me both want to find a solution for this problem, I don't know what it

could be.My rheumy is trying to get me back on Enbrel, NO WAY.

Eva

From: Katz <mpkatz@...>

Subject: rheumatic synoval inflamation

rheumatic

Date: Friday, September 5, 2008, 10:39 AM

I have been on this list for a few years and although I haven't posted recently,

I have been lurking. I enjoy all the comments, find them very helpful and have

told many others about this list.

I was diagnosed with RA about five years ago. It was diagnosed when a thumb

tendon ruptured. A year later the thumb tendon on my other hand ruptured. I had

three operations on my wrist in about a year.

My rheumy put me on methotrexate which I didn't really want and caused problems

with my liver. He then gave me minocin reluctantly and after a lot of pushing

for it on my part. He doesn't believe in the mycoplasma theory. I was on minocin

until the price increase when Triax purchased it. I switched to minocycline

which seemed to work just fine, but then went on doxcy when I started to get

hyperpigmentation. I have done well on the antibiotics much to the surprise of

the doctor. However, for a year I have had swelling in my wrist. An MRI shows a

lot synovial fluid and was said to be moderate to severe. I am concerned about

another tendon rupture. My rheumy said the only thing that would get rid of the

fluid/inflammation is orencia or enbrel or arava and plaquinil together. He also

said I could try methotrexate again as he thinks the liver problem was really

due to other things contributing to it at the time and now I could tolerate it!

I do not want to take any of these heavy duty meds if at all possible, but I

want to be rid of this fluid and inflammation. I would really appreciate

suggestions, as I am in a quandary.

I am in the process of trying to find another doctor to go to. I have never been

happy with him but at least he would prescribe mino.

Any feedback would be very much appreciated.

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Hi ,  I don't know what part of the country you are in, but if you can get

to Dr, T. in Boston, Dr W. in New York, Dr.F. in Southern California or some

other ones recommended by people on this site or the RBF site. I would make the

extra effort to get good advise from these well known A/P doctors who believe in

Dr. Brown and know the reasoning behind these diseases, if I were you.  In fact

I did.  I took a plane to Boston before I tried anything else and I am well

today because of it.  The expense of the plane money is nothing compared to the

money you spend on stuff that does not work.  (These diseases are of Infectious

origin and only by getting rid of the cause, can you find a cure), It is so

plain to see.  The best to all of you, Dolores & Mike

From: Katz <mpkatzlaplaza (DOT) org>

Subject: rheumatic synoval inflamation

rheumatic@grou ps.com

Date: Friday, September 5, 2008, 10:39 AM

I have been on this list for a few years and although I haven't posted recently,

I have been lurking. I enjoy all the comments, find them very helpful and have

told many others about this list.

I was diagnosed with RA about five years ago. It was diagnosed when a thumb

tendon ruptured. A year later the thumb tendon on my other hand ruptured. I had

three operations on my wrist in about a year.

My rheumy put me on methotrexate which I didn't really want and caused problems

with my liver. He then gave me minocin reluctantly and after a lot of pushing

for it on my part. He doesn't believe in the mycoplasma theory. I was on minocin

until the price increase when Triax purchased it. I switched to minocycline

which seemed to work just fine, but then went on doxcy when I started to get

hyperpigmentation. I have done well on the antibiotics much to the surprise of

the doctor. However, for a year I have had swelling in my wrist. An MRI shows a

lot synovial fluid and was said to be moderate to severe. I am concerned about

another tendon rupture. My rheumy said the only thing that would get rid of the

fluid/inflammation is orencia or enbrel or arava and plaquinil together. He also

said I could try methotrexate again as he thinks the liver problem was really

due to other things contributing to it at the time and now I could tolerate it!

I do not want to take any of these heavy duty meds if at all possible, but I

want to be rid of this fluid and inflammation. I would really appreciate

suggestions, as I am in a quandary.

I am in the process of trying to find another doctor to go to. I have never been

happy with him but at least he would prescribe mino.

Any feedback would be very much appreciated.

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Hi ,

You may want to ask for cortisone or Cortef. It is not prednisone. It is

still cortisone but you can take less and I had a very easy time getting off

it when I no longer needed it. As for the embrel I hope you read what I just

wrote in another note.

I would also look at fungus. Maybe this is why you are hurting.

Also there are a lt of natural antiinflamatories such as curcumin. If you

decide to try one or two I would suggest you double the dose for a while.

I personally don't like doxy. If you can.order minocin from Canada. It is

still expensive but cheeper by far than in the US. Sometimes I would change

antibiotics to give AP a push.

Good luck.

Cooky

Subject: rheumatic synoval inflamation

I have been on this list for a few years and although I haven't posted

recently, I have been lurking. I enjoy all the comments, find them very

helpful and have told many others about this list.

I was diagnosed with RA about five years ago. It was diagnosed when a thumb

tendon ruptured. A year later the thumb tendon on my other hand ruptured. I

had three operations on my wrist in about a year.

My rheumy put me on methotrexate which I didn't really want and caused

problems with my liver. He then gave me minocin reluctantly and after a lot

of pushing for it on my part. He doesn't believe in the mycoplasma theory. I

was on minocin until the price increase when Triax purchased it. I switched

to minocycline which seemed to work just fine, but then went on doxcy when I

started to get hyperpigmentation.I have done well on the antibiotics much to

the surprise of the doctor. However, for a year I have had swelling in my

wrist. An MRI shows a lot synovial fluid and was said to be moderate to

severe. I am concerned about another tendon rupture. My rheumy said the only

thing that would get rid of the fluid/inflammation is orencia or enbrel or

arava and plaquinil together. He also said I could try methotrexate again as

he thinks the liver problem was really due to other things contributing to

it at the time and now I could tolerate it!

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 Hi , Hyperpigmentation will lighten up once you stay out of the sun. 

That's what I did and continued with the Minocin.  Am still on Minocin and cover

up when I am in the sun.  I walk with an umbrella.  They have some that block

infrared rays as well UVB.  It will take a while, but you will get lighter.  I

still take Minocin.  I'm on my third year.  Was on it for two years---100mg

twice a day and now I decided to try Marshall Protocol which also uses Minocin,

clindamycin and zithromycin.  But not all at the same time.  Nor at the same

doses.  It is a program where you ramp these up slowly and pulse them at certain

levels.  Not to be undertaken on your own. That can cause severe herxing if you

do it wrong and can do severe damage.  I started a year ago and just going into

the full Phase 2 from the modified phase 2.  I'm sure I'll be on it for at least

two more years.  I did feel better when I was on Minocin only, but I never had a

herx.  I just felt wonderful.  So, I went on MP to provoke herxing because I

knew I was not killing off the micoplasma pneumonae that I was positive for.  On

MP, some people herx badly, but mine have been very tolerable.  Still I can feel

the herxes when they come, so I am not feeling as well as I used to, but I take

it as a sign that I am getting at the culprits and hope to be rid of them some

day in the future.  I will most probablyy be on some Minocin from time to time

for the rest of my life.  Anyway, I agree that Minocin should be the drug of

choice over doxy, although I have never tried doxy, so I don't really know.  it

is just what I have read.  Take care,  Dolores & Mike

From: C Stonkey <cookee1@...>

Subject: RE: rheumatic synoval inflamation

rheumatic

Date: Friday, September 5, 2008, 4:37 PM

Hi ,

You may want to ask for cortisone or Cortef. It is not prednisone. It is

still cortisone but you can take less and I had a very easy time getting off

it when I no longer needed it. As for the embrel I hope you read what I just

wrote in another note.

I would also look at fungus. Maybe this is why you are hurting.

Also there are a lt of natural antiinflamatories such as curcumin. If you

decide to try one or two I would suggest you double the dose for a while.

I personally don't like doxy. If you can.order minocin from Canada. It is

still expensive but cheeper by far than in the US. Sometimes I would change

antibiotics to give AP a push.

Good luck.

Cooky

Subject: rheumatic synoval inflamation

I have been on this list for a few years and although I haven't posted

recently, I have been lurking. I enjoy all the comments, find them very

helpful and have told many others about this list.

I was diagnosed with RA about five years ago. It was diagnosed when a thumb

tendon ruptured. A year later the thumb tendon on my other hand ruptured. I

had three operations on my wrist in about a year.

My rheumy put me on methotrexate which I didn't really want and caused

problems with my liver. He then gave me minocin reluctantly and after a lot

of pushing for it on my part. He doesn't believe in the mycoplasma theory. I

was on minocin until the price increase when Triax purchased it. I switched

to minocycline which seemed to work just fine, but then went on doxcy when I

started to get hyperpigmentation. I have done well on the antibiotics much to

the surprise of the doctor. However, for a year I have had swelling in my

wrist. An MRI shows a lot synovial fluid and was said to be moderate to

severe. I am concerned about another tendon rupture. My rheumy said the only

thing that would get rid of the fluid/inflammation is orencia or enbrel or

arava and plaquinil together. He also said I could try methotrexate again as

he thinks the liver problem was really due to other things contributing to

it at the time and now I could tolerate it!

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Thanks for your response Cooky and Dolores.

I have read that many people do well on minocycline and doxy. And I did seem to

be doing ok with them, except for the swelling on the top of my wrist this past

year. It is not red and hot and does not hurt. That surprises me. When it was

in my wrists a few years ago it was very red, hot and painful.Otherwise, except

for an ache here and there on occasion, I am doing very well and function

normally.

The suggestion to get back on Minocin is a good one. I will call the doctor and

see if he will give me a prescription for minocin again and order it from

Canada. I don't know why the doc did not give me an anti inflammatory on this

visit. I will ask him about that when I call also. I took nabumetone a few

years ago and that seemed to help, so I will ask him to give that to me

again........at least for the time being. I'll have to use this doctor for

meds, etc. until I can get in with a new one. I hear it takes 6 months to see

the one I want to go to in Albuquerque. And I need to step up my supplements. I

have gotten a little lax with those.

The hyperpigmentation started two summers ago with a faster and darker tan. I

realized how tan I was when someone asked me what nationality I was. I am

anglo...all European heritage. Then I started getting the dark bruise-like

splotches on my upper lip, as well as having some scars turn almost black. I

stay out of the sun when possible and slather sunscreen on myself and cover up

in the sun. However, I can't avoid some outside activities and I live in a high

desert, high altitude area.

Thanks again. Feedback from this group is so helpful.

RE: rheumatic synoval inflamation

rheumatic

Date: Friday, September 5, 2008, 4:37 PM

Hi ,

You may want to ask for cortisone or Cortef. It is not prednisone. It is

still cortisone but you can take less and I had a very easy time getting off

it when I no longer needed it. As for the embrel I hope you read what I just

wrote in another note.

I would also look at fungus. Maybe this is why you are hurting.

Also there are a lt of natural antiinflamatories such as curcumin. If you

decide to try one or two I would suggest you double the dose for a while.

I personally don't like doxy. If you can.order minocin from Canada. It is

still expensive but cheeper by far than in the US. Sometimes I would change

antibiotics to give AP a push.

Good luck.

Cooky

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take a higher dose or if you are not taking it already take some vit C.

It is supposto help the hyperpigmentation. Wear a 50 SPF. The best one I

have found is called .

I would not do anti inflames if possible.they kill your stomach and gut. By

the way.is the swelling on the wrist hard like a ball or diffuse.kind of all

over??

cooky

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Thanks Cooky,

I have heard that Vit K is also good to keep the hyperpigmentation down. Is

this correct?

I don't want to take anti inflammatories, but thought it might help to get the

inflammation down before it ruptures my tendon. If it was not on a long term

basis it might not be so bad.

The swelling is on the outside of my wrist just above where it bends, in line

with my index finger. It is not hard but soft and not as large an area as it

has been in the past. The MRI says consistent with intersection syndrome and

shows a lot of fluid.

RE: rheumatic synoval inflamation

take a higher dose or if you are not taking it already take some vit C.

It is supposto help the hyperpigmentation. Wear a 50 SPF. The best one I

have found is called .

I would not do anti inflames if possible.they kill your stomach and gut. By

the way.is the swelling on the wrist hard like a ball or diffuse.kind of all

over??

cooky

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I don't know about Vit K but you may want to try B6 also for the swelling.

Double the dose for a few days then take as written daily and see if it

helps.

OK yes anti inflam may be good to help not rupture a tendon. Also OR the

cortef. Take glutamine and aloe vera (if you take the anti's) for your gut

as well as the probiotics.

I had the same swelling and it took till 2 years on minocin to quiet it and

then for many years I had it on an irregular basis (when I ate birthday cake

or chocolate candy).

cooky

Subject: Re: rheumatic synoval inflamation

Thanks Cooky,

I have heard that Vit K is also good to keep the hyperpigmentation down. Is

this correct?

I don't want to take anti inflammatories, but thought it might help to get

the inflammation down before it ruptures my tendon. If it was not on a long

term basis it might not be so bad.

The swelling is on the outside of my wrist just above where it bends, in

line with my index finger. It is not hard but soft and not as large an area

as it has been in the past. The MRI says consistent with intersection

syndrome and shows a lot of fluid.

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Cooky,

Thanks. You have been so helpful. I have read posts you have made throughout

the past years to other people as well. You are always so encouraging and

helpful in your information. We're all lucky to have you as part of this list.

Re: rheumatic synoval inflamation

Thanks Cooky,

I have heard that Vit K is also good to keep the hyperpigmentation down. Is

this correct?

I don't want to take anti inflammatories, but thought it might help to get

the inflammation down before it ruptures my tendon. If it was not on a long

term basis it might not be so bad.

The swelling is on the outside of my wrist just above where it bends, in

line with my index finger. It is not hard but soft and not as large an area

as it has been in the past. The MRI says consistent with intersection

syndrome and shows a lot of fluid.

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Thank you so much . I just wish I could do more.

_____

From: rheumatic [mailto:rheumatic ] On Behalf

Of Katz

Sent: Sunday, September 07, 2008 5:53 PM

rheumatic

Subject: Re: rheumatic synoval inflamation

Cooky,

Thanks. You have been so helpful. I have read posts you have made throughout

the past years to other people as well. You are always so encouraging and

helpful in your information. We're all lucky to have you as part of this

list.

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I don't know about hyperpigmentation, but for some reason, vit K does a

whole bunch to minimize or eliminate my joint muscle pain. I've only

heard one other person who has said this, so it must be pretty rare.

I'm taking the cheap version too, which is vitamin K1. The other person

I spoke with said vit K2 was what did it for her. I don't understand

this effect - perhaps it will eventually stop. ( ?)

Vit K is not toxic, and everyone agrees that there is no known toxic

level or dose. So if you decide to try it, shoot for 5 to 10 times

RDA. Vit K is found in all the green leafy veggies. The green leafies

do something, but not nearly as good as the supplement.

Amy

C Stonkey wrote:

>

> I don't know about Vit K but you may want to try B6 also for the swelling.

> Double the dose for a few days then take as written daily and see if it

> helps.

>

> OK yes anti inflam may be good to help not rupture a tendon. Also OR the

> cortef. Take glutamine and aloe vera (if you take the anti's) for your gut

> as well as the probiotics.

>

> I had the same swelling and it took till 2 years on minocin to quiet

> it and

> then for many years I had it on an irregular basis (when I ate

> birthday cake

> or chocolate candy).

>

> cooky

>

> Subject: Re: rheumatic synoval inflamation

>

> Thanks Cooky,

> I have heard that Vit K is also good to keep the hyperpigmentation

> down. Is

> this correct?

>

> I don't want to take anti inflammatories, but thought it might help to get

> the inflammation down before it ruptures my tendon. If it was not on a

> long

> term basis it might not be so bad.

>

> The swelling is on the outside of my wrist just above where it bends, in

> line with my index finger. It is not hard but soft and not as large an

> area

> as it has been in the past. The MRI says consistent with intersection

> syndrome and shows a lot of fluid.

>

>

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PS.... one thing that vitamin K is known to do, is to keep calcium out

of the arteries and into the bones. I don't know if this is relevant to

inflammation. I suppose it could be, because some scientists report

that one reason for inflammation is that calcium deposits lodge in in

joints, muscles, heart, and brain.

Amy

Amy wrote:

>

> I don't know about hyperpigmentation, but for some reason, vit K does a

> whole bunch to minimize or eliminate my joint muscle pain. I've only

> heard one other person who has said this, so it must be pretty rare.

>

> I'm taking the cheap version too, which is vitamin K1. The other person

> I spoke with said vit K2 was what did it for her. I don't understand

> this effect - perhaps it will eventually stop. ( ?)

>

> Vit K is not toxic, and everyone agrees that there is no known toxic

> level or dose. So if you decide to try it, shoot for 5 to 10 times

> RDA. Vit K is found in all the green leafy veggies. The green leafies

> do something, but not nearly as good as the supplement.

>

> Amy

>

> C Stonkey wrote:

> >

> > I don't know about Vit K but you may want to try B6 also for the

> swelling.

> > Double the dose for a few days then take as written daily and see if it

> > helps.

> >

> > OK yes anti inflam may be good to help not rupture a tendon. Also OR the

> > cortef. Take glutamine and aloe vera (if you take the anti's) for

> your gut

> > as well as the probiotics.

> >

> > I had the same swelling and it took till 2 years on minocin to quiet

> > it and

> > then for many years I had it on an irregular basis (when I ate

> > birthday cake

> > or chocolate candy).

> >

> > cooky

> >

> > Subject: Re: rheumatic synoval inflamation

> >

> > Thanks Cooky,

> > I have heard that Vit K is also good to keep the hyperpigmentation

> > down. Is

> > this correct?

> >

> > I don't want to take anti inflammatories, but thought it might help

> to get

> > the inflammation down before it ruptures my tendon. If it was not on a

> > long

> > term basis it might not be so bad.

> >

> > The swelling is on the outside of my wrist just above where it bends, in

> > line with my index finger. It is not hard but soft and not as large an

> > area

> > as it has been in the past. The MRI says consistent with intersection

> > syndrome and shows a lot of fluid.

> >

> >

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  • 3 months later...

,

 

have you had any luck with the synovial lining inflammation to be taken care

off? I am still wondering what I can do about mine, I have it on both of my

hands and they look like they are always on fire. I have tried lots of different

things, but nothing is making it better.

Wishing you a great 2009.

Eva

From: Katz <mpkatz@...>

Subject: rheumatic synoval inflamation

rheumatic

Date: Friday, September 5, 2008, 10:39 AM

I have been on this list for a few years and although I haven't posted recently,

I have been lurking. I enjoy all the comments, find them very helpful and have

told many others about this list.

I was diagnosed with RA about five years ago. It was diagnosed when a thumb

tendon ruptured. A year later the thumb tendon on my other hand ruptured. I had

three operations on my wrist in about a year.

My rheumy put me on methotrexate which I didn't really want and caused problems

with my liver. He then gave me minocin reluctantly and after a lot of pushing

for it on my part. He doesn't believe in the mycoplasma theory. I was on minocin

until the price increase when Triax purchased it. I switched to minocycline

which seemed to work just fine, but then went on doxcy when I started to get

hyperpigmentation. I have done well on the antibiotics much to the surprise of

the doctor. However, for a year I have had swelling in my wrist. An MRI shows a

lot synovial fluid and was said to be moderate to severe. I am concerned about

another tendon rupture. My rheumy said the only thing that would get rid of the

fluid/inflammation is orencia or enbrel or arava and plaquinil together. He also

said I could try methotrexate again as he thinks the liver problem was really

due to other things contributing to it at the time and now I could tolerate it!

I do not want to take any of these heavy duty meds if at all possible, but I

want to be rid of this fluid and inflammation. I would really appreciate

suggestions, as I am in a quandary.

I am in the process of trying to find another doctor to go to. I have never been

happy with him but at least he would prescribe mino.

Any feedback would be very much appreciated.

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,

I too have much inflammation in my hands and wrists, I have had ra induced

carpal tunnel and had to have surgery for that as the doctor thought the tendon

would burst. While in there he scooped out handfuls of synnovial fluid. So

that wrist is better but my other still has two little balls of fluid, it looks

awful but is not painful. I just want to tell you that last June I did end up

going on Enbrel and while my hands and fingers are much better the swelling is

still there (probably because the root of the problem isn't being addressed) but

anyway don't let them tell you that these drugs will solve that because for me,

while I am feeling better...but at what cost?) the inflammation is still there.

Sue

---- Eva Holloway <holloway-eva@...> wrote:

> ,

>  

> have you had any luck with the synovial lining inflammation to be taken care

off? I am still wondering what I can do about mine, I have it on both of my

hands and they look like they are always on fire. I have tried lots of different

things, but nothing is making it better.

> Wishing you a great 2009.

> Eva

>

>

>

> From: Katz <mpkatz@...>

> Subject: rheumatic synoval inflamation

> rheumatic

> Date: Friday, September 5, 2008, 10:39 AM

>

>

>

>

>

>

> I have been on this list for a few years and although I haven't posted

recently, I have been lurking. I enjoy all the comments, find them very helpful

and have told many others about this list.

>

> I was diagnosed with RA about five years ago. It was diagnosed when a thumb

tendon ruptured. A year later the thumb tendon on my other hand ruptured. I had

three operations on my wrist in about a year.

>

> My rheumy put me on methotrexate which I didn't really want and caused

problems with my liver. He then gave me minocin reluctantly and after a lot of

pushing for it on my part. He doesn't believe in the mycoplasma theory. I was on

minocin until the price increase when Triax purchased it. I switched to

minocycline which seemed to work just fine, but then went on doxcy when I

started to get hyperpigmentation. I have done well on the antibiotics much to

the surprise of the doctor. However, for a year I have had swelling in my wrist.

An MRI shows a lot synovial fluid and was said to be moderate to severe. I am

concerned about another tendon rupture. My rheumy said the only thing that would

get rid of the fluid/inflammation is orencia or enbrel or arava and plaquinil

together. He also said I could try methotrexate again as he thinks the liver

problem was really due to other things contributing to it at the time and now I

could tolerate it!

>

> I do not want to take any of these heavy duty meds if at all possible, but I

want to be rid of this fluid and inflammation. I would really appreciate

suggestions, as I am in a quandary.

>

> I am in the process of trying to find another doctor to go to. I have never

been happy with him but at least he would prescribe mino.

>

> Any feedback would be very much appreciated.

>

>

>

>

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This is my first post. I have RA X 12 yrs. I took MTX, Celebrex, Remicade,

Arava, then Enbrel. But after developing severe lung problems (pneumonia X 3

and now mild asthmatic symptoms persist) winter before last, I gathered up my

courage to take info off www.roadback.org and insist on getting off MTX,

Celebrex and slowly weaned off Enbrel. That was a year ago last April (2007).

I have done well, though the rheumatologist told me it will come back on me. He

isn't convinced of the mycoplasma theory, or maybe he's afraid of losing his

living. Anyway, I decided approx. 5 mos. ago that since I was doing so well, I

could probably use doxy for awhile. I started having fairly severe hand and

wrist joint involvement after a few weeks. So then I thought I would go back to

Minocin, but was trying to cut costs, so tried the generic minocycline. That

was a mistake for me! My hands and wrists have been flaring continuously worse

ever since soon after stopping brand Minocin. So I have Minocin on order again

and can't wait to get back on it and STAY on it!

I don't know that my story will be of any help at all to you, but at least you

can see my disease course. I hope you ladies symptoms are soon relieved.

Laretta Mason

rheumatic synoval inflamation

> rheumatic

> Date: Friday, September 5, 2008, 10:39 AM

>

>

>

>

>

>

> I have been on this list for a few years and although I haven't posted

recently, I have been lurking. I enjoy all the comments, find them very helpful

and have told many others about this list.

>

> I was diagnosed with RA about five years ago. It was diagnosed when a thumb

tendon ruptured. A year later the thumb tendon on my other hand ruptured. I had

three operations on my wrist in about a year.

>

> My rheumy put me on methotrexate which I didn't really want and caused

problems with my liver. He then gave me minocin reluctantly and after a lot of

pushing for it on my part. He doesn't believe in the mycoplasma theory. I was on

minocin until the price increase when Triax purchased it. I switched to

minocycline which seemed to work just fine, but then went on doxcy when I

started to get hyperpigmentation. I have done well on the antibiotics much to

the surprise of the doctor. However, for a year I have had swelling in my wrist.

An MRI shows a lot synovial fluid and was said to be moderate to severe. I am

concerned about another tendon rupture. My rheumy said the only thing that would

get rid of the fluid/inflammation is orencia or enbrel or arava and plaquinil

together. He also said I could try methotrexate again as he thinks the liver

problem was really due to other things contributing to it at the time and now I

could tolerate it!

>

> I do not want to take any of these heavy duty meds if at all possible, but I

want to be rid of this fluid and inflammation. I would really appreciate

suggestions, as I am in a quandary.

>

> I am in the process of trying to find another doctor to go to. I have never

been happy with him but at least he would prescribe mino.

>

> Any feedback would be very much appreciated.

>

>

>

>

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