Re: OFF MTX IN PAIN WITH MINOCYCLINE

[Guest guest]

Diane, please call your rheumatologist.

Not an MD

> [ ] OFF MTX IN PAIN WITH MINOCYCLINE

>

> NOt sure if I made a big mistake by going off the MTX to try

> Minocycline. I am in so much pain I can't even sleep. My hands are

> the worse they have ever been. I thought the MTX wasn't working so

> great but maybe it really was. I am in the worse pain since first

> being DX about 4 years ago. My Doctor wasn't crazy about the idea of

> putting me on the Minocycline and now I hate to have to call him to

> tell him how bad I am. Anyone have any suggestions? Think I should

> try to stick it out to see if the Minocycline will work? If it takes 6

> months to work I feel like I couldn't take it. Thanks for any help...

> Diane

[Guest guest]

I was just at my rheum's office for a visit yesterday and can tell you about

what I was told. I have been on Mobic and Minocycline for 6 months with no

improvement. So he added Plaquenil to see what happens. But... he said studies

are on record showing that patients on a multi drug regimen like Plaquenil and

Methotrexate and the same time had far higher rates of improvement. No studies

have been done that he is aware of on multi drugs when minocycline is one of

them. He said if I am not better on the plaquenil and minocycline in 2 months we

will have to go to MTX. Talk to your MD and see if he can try you on a

combination. The Minocycline does take a minimum of 6 months to work and may not

even after that.

Good Luck!

Jan

Jan

---------------------------------

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[Guest guest]

Jan thank you, this is such a confusing disease with all the

different cocktails that work isn't it?? I was trying so desperately

to get away from the MTX because of the toxic factor. I don't think I

can survive 6 months with this pain. I just got back out of bed. I

think I would have to spend 6 months in bed waiting to see if it

works....I do have Prednisone that I could take but it makes me

crazy. I guess I will call the doctor and see what he says...he

knows how read up on the meds and the disease so he always asks me

what I would like to do? I like this is one way, but in another,

it's a lot of pressure on me because this is a tough one and I don't

know what the hell to tell him. This is one case I wish he were one

of those doctors that just said this is it and this is what you do

and that's it...lol

I will see what happens...I have sausage fingers that I can't

straighten out that pain and burn and get hot. Does that sound like

RA? :-)

diane

diane

>

> I was just at my rheum's office for a visit yesterday and can tell

you about what I was told. I have been on Mobic and Minocycline for 6

months with no improvement. So he added Plaquenil to see what

happens. But... he said studies are on record showing that patients

on a multi drug regimen like Plaquenil and Methotrexate and the same

time had far higher rates of improvement. No studies have been done

that he is aware of on multi drugs when minocycline is one of them.

He said if I am not better on the plaquenil and minocycline in 2

months we will have to go to MTX. Talk to your MD and see if he can

try you on a combination. The Minocycline does take a minimum of 6

months to work and may not even after that.

>

> Good Luck!

>

> Jan

>

>

> Jan

>

>

>

>

>

> ---------------------------------

> Looking for last minute shopping deals? Find them fast with

Search.

>

>

[Guest guest]

I just called his office and waiting to hear back. I know there

are no magic cures or answers...thanks..diane

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Diane, please call your rheumatologist.

>

>

> Not an MD

>

>

> > [ ] OFF MTX IN PAIN WITH MINOCYCLINE

> >

> > NOt sure if I made a big mistake by going off the MTX to try

> > Minocycline. I am in so much pain I can't even sleep. My hands

are

> > the worse they have ever been. I thought the MTX wasn't working

so

> > great but maybe it really was. I am in the worse pain since first

> > being DX about 4 years ago. My Doctor wasn't crazy about the

idea of

> > putting me on the Minocycline and now I hate to have to call him

to

> > tell him how bad I am. Anyone have any suggestions? Think I

should

> > try to stick it out to see if the Minocycline will work? If it

takes 6

> > months to work I feel like I couldn't take it. Thanks for any

help...

> > Diane

>

[Guest guest]

Doctor just called and he told me to take 5 mg of Prednisone and see

how it goes in the next 1-2 weeks...so I did...it makes me crazy but

the pain is making me crazier...the lesser of two evils I guess...

diane

--- In , " " <Matsumura_Clan@...>

wrote:

>

> Diane, please call your rheumatologist.

>

>

> Not an MD

>

>

> > [ ] OFF MTX IN PAIN WITH MINOCYCLINE

> >

> > NOt sure if I made a big mistake by going off the MTX to try

> > Minocycline. I am in so much pain I can't even sleep. My hands

are

> > the worse they have ever been. I thought the MTX wasn't working

so

> > great but maybe it really was. I am in the worse pain since first

> > being DX about 4 years ago. My Doctor wasn't crazy about the

idea of

> > putting me on the Minocycline and now I hate to have to call him

to

> > tell him how bad I am. Anyone have any suggestions? Think I

should

> > try to stick it out to see if the Minocycline will work? If it

takes 6

> > months to work I feel like I couldn't take it. Thanks for any

help...

> > Diane

>

[Guest guest]

Yes my doctor leaves it up to me mostly too. I have an immune disorder that

causes me to get many infections which of course causes problems treating the RA

because they all affect the immune system. He tells me that a doctor must first

do no harm, therefore my care is very difficult. But I like that he wants me to

give input and that he listens to me. Very few docs do that.

I know all about the steroid effects too. I have had lung problems for about

20 yrs and now have a trach, plus I have steroid induced Diabetes. It runs in my

family anyway but they said I wouldn't have gotten it so young if not for the

steroid use.

Just hang in there!

Jan

Jan

---------------------------------

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

Hi Jan,

I guess I should be happy that my doctor involves me in my care.

It sounds like you have your hands full, I wish you well...there is

always someone worse off. I guess the pain is just making me a

little whineeeey today. :-)

Take care and thanks for writing...

diane

>

> Yes my doctor leaves it up to me mostly too. I have an immune

disorder that causes me to get many infections which of course causes

problems treating the RA because they all affect the immune system.

He tells me that a doctor must first do no harm, therefore my care is

very difficult. But I like that he wants me to give input and that he

listens to me. Very few docs do that.

>

> I know all about the steroid effects too. I have had lung

problems for about 20 yrs and now have a trach, plus I have steroid

induced Diabetes. It runs in my family anyway but they said I

wouldn't have gotten it so young if not for the steroid use.

>

> Just hang in there!

>

> Jan

>

>

> Jan

>

>

>

>

>

> ---------------------------------

> Be a better friend, newshound, and know-it-all with Mobile.

Try it now.

>

>

[Guest guest]

I hope you are feeling much better today, Diane.

Not an MD

> [ ] Re: OFF MTX IN PAIN WITH MINOCYCLINE

>

> Doctor just called and he told me to take 5 mg of Prednisone and see

> how it goes in the next 1-2 weeks...so I did...it makes me crazy but

> the pain is making me crazier...the lesser of two evils I guess...

> diane

[Guest guest]

,

Thanks for writing. I do feel a lot better today, in fact I did not

take any PRED...I hate that stuff. I cut the Minocycline down to

100mgs. I feel good. Very little pain and fingers aare working with

no swelling. Thank God. Thanks for asking...have a great weekend...

diane

--- In , " " <Matsumura_Clan@...>

wrote:

>

> I hope you are feeling much better today, Diane.

>

>

> Not an MD

>

> > [ ] Re: OFF MTX IN PAIN WITH MINOCYCLINE

> >

> > Doctor just called and he told me to take 5 mg of Prednisone and

see

> > how it goes in the next 1-2 weeks...so I did...it makes me crazy

but

> > the pain is making me crazier...the lesser of two evils I guess...

> > diane

>