: Remicade/Doug

[Guest guest]

Hi Doug ,

Well a few comments if I may . I have been with this group for quite a while

and I have never seen you post before . I have never seen anyone advise anybody

of anything but more often offer up what they have done and almost consistently

the patients are encouraged to check with their dr . If you took it upon

yourself to listen to advice over the internet chat / message boards well then

that was you first mistake .

Second this is an antibiotic SUPPORT group so why are you here now if your not

on it ??? Im glad you found something that works . If you had stayed on

antibiotic therapy even after the nine months and added what you felt was a more

aggressive approach maybe this would help you get off more harmful drugs later .

As in O'Dell's studies with RA ( which is a rheumatic disease that effects the

largest population more then PA ) he discovered that after 4 YEARS on minocin

the need for DMARDs ( which is what MXT is) was lessened and the remission rates

were even higher but considering you stopped this we will never know if this in

fact would have helped you had you been more patient . I have MCTD but it is a

small group of us in comparison to RA that are effected with this disease

studies can not be done on all 170+ rheumatic disease there just isn't enough

money for that . Yet based on what was available and the testimonal data ,

clinical trials I opted to try this because of its benign history . Minocin is a

drug that is over 40 yrs on the market and we know all the long term effects are

safe and benign . It would have been nice if your dr had at least offered this

to you along with you conventional options. Apparently you are not well versed

about this drug its studies and effects by your comments below maybe you should

have stayed a little longer to learn more . Either way I am delighted you found

something that works for you . If you are not on antibiotic therapy nor

considering it I would suggest you join a group that is more suitable for the

treatment option that has helped you and share your success with others as we

have done here. Regards,

socjog

It's kind of funny, really. I stopped participating in this forum

about four months ago because folks here seemed so stuck on

antibiotic therapy that they often criticize those of us who are not

helped by it. Just for fun, and a bit out of curiosity, I logged in

today and guess what I found - more of the same!

The fact is that antibiotic therapy does not work for everyone. I

would love to see statistics on it's efficacy for something like what

I have - Psoriatic Arthritis. In my case, it was 100% useless. I

tried it for almost a year while my arthritis kept getting worse and

worse. My family Dr. allowed me to try it and prescribed the

necessary treatment. After nine months he gave up and referred me to

a Rheumatologist who put me on Sulfazaladine and MTX. Within a

matter of three weeks I went from the wheelchair to walking around

the block every day. He kept me on MTX for a few months, then we

switched to Remicade because it is safer and more effective for me.

For me, MTX, Sulfazaladine, and yes, Remicade have all been

miracles. This is true for many others as well.

Let's not forget that any drug, including antibiotics, effect many

aspects of your metabolism - some of which are not at all

understood. Since each of us has a unique metabolism, it is safe to

say that each of us also has an ideal set of drugs that work best.

What works for you may do nothing for me. What is toxic for me may

not be for you.

Having said all this, I strongly advise all of you to stop offering

advice to people in this forum regarding what drugs are best for

them. I took your advice and it nearly cost me my mobility. I can

only imagine how many others you have misled by your unqualified

advice and are now unable to walk because of it.

Farewell,

Doug