Re: Re: Is it polymyositis? If so what next?

[Guest guest]

Hi ;

I have SD,last year I was swollen from head to toe and I gained 14lbs.This

lasted for several months and the doc finally gave me a whopping dose of

prednisone to get it

down.It was at the dangerous level and since I normally weight 95-97 it was

wayyyyyyyyyyy to much.It slowly brought the inflamation down over 6 months but

after I looked

like hell.The muscle waisting was terrible and they seemed to just be hanging

from my bones....talk about flabby.I have always exercised ,between 1-2 hours a

day but it did

no good and my butt seemed to be hanging down around my kneesThe way I looked

just added to the existing depression.I started taking a very good(expensive)

undenatured whey

along with L-Glutamine and Creatin.A year later I have back my sexy French

figure,but,as you say 3 steps back and 2 forward..I now have a bad case of

reactive arthritis to

top off the SD.AP only worked for me the first few months and then quit,I tried

every imaginable combo but am still on MTX and now Vioxx.I am going to stick

with it come

hell or high water as I am now aproching the 3 year point and I know it ca

sometimes take ages to kick in. Lynne

Nicometo wrote:

> i have dermatomyositis/polymyisitis....depends on the doc you talk

> to. i have had 3 muscle biopsies. all show inflammation and muscle

> breakdown and muscle rebuilding. not helpful at all to know that.

> i have started the AP (now 3 months) i have a severe case of

> dermatomyositis and i have had small improvements already. but it

> is DEFINITELY a 3 step forward 2 step back journey. Viola....i will

> let you know how i do. infection is the underlying cause of these

> diseases i beleive it is just a matter of tailoring the protocal to

> each person and supporting the bodies healing process. wishing you

> well.

>

> rachael

>

>

> > Viola.....I have Ra and not polymyositis, but from my own

> experience, I would

> > not have the biopsy unless you really feel a need to know. Since

> you are

> > already doing so well, short of a complete cure...what more could

> the doc do for

> > you?? I would use my time to research the disease and different

> avenues open

> > to you. You can always have it done at a later date. Just my

> thoughts on the

> > subject. Martha

> >

> >

> >

[Guest guest]

----- Original Message -----

From: " Lynneandsantos " <lynneandsantos@...>

..AP only worked for me the first few months and then quit.

The AP is a long term therapy. In no way would you get lasting benefit in a

few months. I've known people to receive temporary immediate benefit, but

it can take years in some cases to reach remission.

I recently spoke with Loftis (scleroderma) whose story is in Henry

Scammell's books and on our website. It took 7 years for her to reach

remission. That was a number of years ago and she is doing great.

Ethel

>

[Guest guest]

Hi ;

I was diagnosed with SD fall of 1999.Put on methotrexate and by the spring of

2000 all external sighns of sSD were gone but felt like hell because of the

pain.Found AP

Nov 2000 and after a few months felt very good most of the time and got off

prednisone.Slowly I lowered the MTX but each time I did the pain and stiffening

came back.After

the first year of AP the doc added clindamycin 1200mg once a week to see if

things would improve.Again I could not lower MTX.Later mino was switched for

doxy and still

nothing so I went back to the mino and raised it to 300mg a day still adding

clindamycin once a week.Doctor refused to add an anti fungal as it is too hard

on the liver as

long as I am on MTX.I was willing to drop it but he warned me that if the SD

starts to harden my skin again I probably will not be able to shake it off

again.No doctor

here will do the I.V.s except one in Ottawa ,I have been on her waiting list for

almost a year and expect to wait for an other year.The roadback Foundation sent

me a list

of AP doctors but when one calls they all say that they never gave their

names,do not really believe in AP but are willing to prescribe oral

antibiotics...just in case it

might work..Now I have reactive arthritis they say but I expect it is just the

progrssion of the SD.It affects all my joints to the point I have to climb the

stairs like

a baby unless I take viox ,then I do just fine/Adlard(of this group)

suggested that I trylowering the mino to only 3 days a week.His daughter did

much better at that

dose so I shall try it since a higher done did nothing in a six month period.I

do not have any yeast problems because I have always taken a good pre and pro

biotic along

with Wobenzym that does wonders for many with arthritis.I still have not

discounted AP as I know it can take years to work.I just hope it does before I

solidify like a

brick.The disease is progressingdespite the the antibiotics and Richie says that

I should have seen some benefit by now so I talked to DR T. again but he could

not comment

on the situation.The first time I talked to him he warned me that this does not

work for everyone,I suspect he did not want to raise my hopes too much...just in

case...Anyway ,I have not given up yet and will continue mino for a few more

years.In the mean time I am now on 10mg MTX a week to be able to function,the

last time I

lowered it for a few weeks I ended up it bed for several weeks and do not want

to go through that again. Lynne

Nicometo wrote:

>

> hi lynne...was wondering if you could share what you have tried with

> the AP. did you do the IV's? try adding flagyl? addressing

> possible yeast issues? thank you and i hope you are well.

>

> rachael

> dermatomyositis

>

>

>

>

>

>

> > > > Viola.....I have Ra and not polymyositis, but from my own

> > > experience, I would

> > > > not have the biopsy unless you really feel a need to know.

> Since

> > > you are

> > > > already doing so well, short of a complete cure...what more

> could

> > > the doc do for

> > > > you?? I would use my time to research the disease and

> different

> > > avenues open

> > > > to you. You can always have it done at a later date. Just my

> > > thoughts on the

> > > > subject. Martha

> > > >

> > > >

> > > >

[Guest guest]

Hi Marge;

Dr T. told me to stay on the mtx until I feel better and then to lower

it.This did not work,each time I lowered it all hell broke loose.I have tried

several time in the

last 3 years. Lynne

elfmarge wrote:

> AP only worked for me the first few months and then quit.

> >

> Hi,

> I also think you have not given this a chance. You also say you now

> are on mtx.The ap will not work and you risk a build up of the chemo

> with the mtx.

> There is an article on the rheumatic.org site I posted a few weeks

> ago.Its is under support and scroll down.It is VITAL you read this.

>

> You also need to know that with the mtx, you would now need a higher

> dose of ap to achieve any benefit( that was my experienceas I was ohn

> mtx and weaned off when i went on AP. It is usually the way we

> work..not the other way around.

> Again, you need to believe this is an infection you are treating not

> that the minocin is another antiinflammatory to take alongside any

> drug.Thats the way a rheumo uses this therapy.It is why the rheumos

> have little success compared to some of the other ap docs.

>

> This is just my own opiion and observation.

>

> Marge

>

>

>

>

>

> >

> > ----- Original Message -----

> > From: " Lynneandsantos " <lynneandsantos@c...>

> >

> > .> The AP is a long term therapy. In no way would you get lasting

> benefit in a

> > few months. I've known people to receive temporary immediate

> benefit, but

> > it can take years in some cases to reach remission.

> >

> > I recently spoke with Loftis (scleroderma) whose story is

> in Henry

> > Scammell's books and on our website. It took 7 years for her to

> reach

> > remission. That was a number of years ago and she is doing great.

> >

> > Ethel

> > >

>

>

>