Re: PIOSA and the Benefits

[Guest guest]

Hi there ,

'Piosa' stands for " Proposed Internet Observational Study for Arthritis "

set up by Dr. Chiu. When Dr. Chiu next writes into the group, have a look

at his links below his answer - these will take you to the Piosa Homepage.

I've taken the liberty of pasting the links at the bottom of this letter as

well.

I joined about 2 yrs ago and in my public profile decided to keep a type of

diary about everything which happened during the month - whether bad or

good. It just made it so much easier for my rheumy to track how the

disease has progressed in the last 2 years. Also makes interesting

reading, LOL!!

My first rheumy was agreeable to me having the Minocyclene and then put me

onto 20mg Prednisilone daily. After three months he told me I only had

Osteo and didn't want to see me again!! It took ages for me to wean off

the prednisilone, but I finally did it - until this last flare. The pain I

have is mainly in my right knee and caused by the tendons and ligaments

being inflamed (product of the RA!) - makes walking pretty hard though!!

When I attended this new rheumy, I printed out my Piosa Public Profile

which is in journal format and it gave him an overall view of what I'd had

to cope with during the last couple of years. I also keep a copy of all my

blood tests on the computer in an Excel file with graphs for the more

important RA blood tests like RF, ANA, CRP, ESR etc. These I printed out

and I also took all the Xrays I'd had taken of feet, ankles, knees, wrists,

hands etc that would help him to make a diagnosis.

Your new doc will want to know the drugs you are on, all operations you

have had, all illnesses you have had. He should also do a physical,

testing your hand strength, leg and ankle strength etc.

Your local doc should be able to prescribe the Minocyclene and I would try

to get it and take it regardless of what your new rheumy says - and

regardless of what anyone else says! Both my docs, the people down at the

pharmacy are most surprised that the erosions haven't shown up on the Xrays

and if it is the Minocyclene at work here, then take the opportunity now to

use it to help yourself

I hope all goes well with your new doc and that you can get him to

prescribe the antibiotics. This is beside the point, but I'm quite amazed

as well LOL!!!

Take Care,

Jude

Dr. Chiu's

[Guest guest]

Hi mimianne,

I was taking 200mg Minocycline every Monday, Wednesday and Friday until my

doc put me on to gold injections. When he did this I decided to up my

dosage to 200mg Monday through Friday and have Sat & Sun off. This was

mostly because at the same time as starting the gold, my rheumatoid factor

jumped to 215 from 120, and I intend to get it back down again and keep it

down.

Yes, I do have a couple of fingers that look as if they've been damaged,

but not to any great extent. My RH index finger on the first joint closest

to the end is enlarged and the index finger on the LH has begun turning out

towards the little finger. I have reduced hand span in the RH (reduced by

about 1 1/2 inches) and the right thumb looks a bit funny - but that's

all!! I still drop things, still get pain (mainly in the knees now - due

to the RA affecting the tendons and ligaments there), but, the Mino has

given me an extra bit of time. If I hadn't taken the Mino, I shudder to

think what I'd be like now

So, take your Mino, regardless. I don't know what lies ahead of me, maybe

remission, maybe not, but I thank God for the day I found this group and

the Antibiotic Therapy.

Take care, and I hope that you will get as much from the AP as I have,

Love and hugs,

Jude.

At 09:32 PM 22/6/1999 -0400, you wrote:

>boy does your post make me feel better. i had to visit 5 MD's before any

>would not LAUGH at my suggestion for abx. finally, i went to a family

>practice guy, of all things, and he gave me minocycline for either

>rheumatoid arthritis or lyme disease. now that's a " good thing " .

>

>what is your dosage? do any of your joints " look " as if damaged. my

>knuckols are pear shaped on a few fingers, and i am not sure if this is

>damage or inflammation? thanks.

>

>>From: Judy Knee <judy@...>

>>

>>Hi there ,

>>

>>'Piosa' stands for " Proposed Internet Observational Study for Arthritis "

>>set up by Dr. Chiu. When Dr. Chiu next writes into the group, have a look

>>at his links below his answer - these will take you to the Piosa Homepage.

>>I've taken the liberty of pasting the links at the bottom of this letter as

>>well.

>>

>>I joined about 2 yrs ago and in my public profile decided to keep a type of

>>diary about everything which happened during the month - whether bad or

>>good. It just made it so much easier for my rheumy to track how the

>>disease has progressed in the last 2 years. Also makes interesting

>>reading, LOL!!

>>

>>My first rheumy was agreeable to me having the Minocyclene and then put me

>>onto 20mg Prednisilone daily. After three months he told me I only had

>>Osteo and didn't want to see me again!! It took ages for me to wean off

>>the prednisilone, but I finally did it - until this last flare. The pain I

>>have is mainly in my right knee and caused by the tendons and ligaments

>>being inflamed (product of the RA!) - makes walking pretty hard though!!

>>

>>When I attended this new rheumy, I printed out my Piosa Public Profile

>>which is in journal format and it gave him an overall view of what I'd had

>>to cope with during the last couple of years. I also keep a copy of all my

>>blood tests on the computer in an Excel file with graphs for the more

>>important RA blood tests like RF, ANA, CRP, ESR etc. These I printed out

>>and I also took all the Xrays I'd had taken of feet, ankles, knees, wrists,

>>hands etc that would help him to make a diagnosis.

>>

>>Your new doc will want to know the drugs you are on, all operations you

>>have had, all illnesses you have had. He should also do a physical,

>>testing your hand strength, leg and ankle strength etc.

>>

>>Your local doc should be able to prescribe the Minocyclene and I would try

>>to get it and take it regardless of what your new rheumy says - and

>>regardless of what anyone else says! Both my docs, the people down at the

>>pharmacy are most surprised that the erosions haven't shown up on the Xrays

>>and if it is the Minocyclene at work here, then take the opportunity now to

>>use it to help yourself

>>

>>I hope all goes well with your new doc and that you can get him to

>>prescribe the antibiotics. This is beside the point, but I'm quite amazed

>>as well LOL!!!

>>

>>Take Care,

>>Jude

>>

>>Dr. Chiu's