Re: can someone help me - Cooky ?

March 5, 2009

Leonie - There is so much going on with you right now. We have to be strong,

and it is definately not easy, I can tell you that. I have diffuse

scleroderma, sjogrens, raynauds, and rheumatory arthritis.

Hang in there, and though I am not a doctor, I would advise you to stick with

the minocycline, which is what I would do given your situation.

Many have judged me presently, and in the past for chosing minocycline to

possibly take me to remission and make me feel better, and those that have taken

another path are sometimes quick to judge us.

I am thinking of you and you are in my prayers. Be strong, and hang in

there.

Feel free to e-mail me directly.

Gail

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March 5, 2009

I take 100 mg. mino 2 X daily.

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March 5, 2009

Dear Leonie ,

I feel so badly for you. I can appreciate your misery, having had 2 knee

replacements(the first didn't take, due to a doctor's error), and presently

suffering from reactive arthritis. It's a good thing you have us to talk to.

I'm a big fan of Minocin. It works really well, although it doesn't work as fast

with some people as it does with others. So, you have to be patient with it. I

responded after 2 weeks on it, and the difference was major. Compare that to

methotrexate which did nothing for me, except waste my time, while I suffered so

much in agony, until my rheumie became convinced that it didn't work and I could

go off of it.

What I really wanted you to know, that for a person with bad knees, stay off of

the prednisone. It is prednisone that I was on 20 years ago, that caused me to

need the knee replacement now. The drug destroys the cartilage. Not all doctors

will admit to it so it was hard for me to get a truthful answer, but it is the

truth. Besides prednisone has so many other bad side effects. Do yourself a

favor and don't get started with it.

You just need to hold on a little more. Hopefully, you can get the Minocin

prescription and get on it as soon as possible.

Mona

rheumatic can someone help me - Cooky ?

Hello list members, I'm in bad shape and feel desperate right now. Since my

knee replacement operation, i've been on strong pain killers (oxycontin,

tramadol, codeine) and they make me feel nauseous and dizzy all the time. Also

the op made most of my other joints flare up badly due to the disruption to my

phsyiology, or something? so now I'm a total wreck. Before that, my symptoms

weren't so bad and I could get by ok. I guess however that I would have gone

downhill at some stage - just delaying the inevitable. I am on a strict diet of

almost nothing at all except salad and tuna, with a bit of fruit, and losing

weight real fast it's scary - that doesn't help with my energy of course. I

don't know what else to do, everything i eat seems to make my RA worse.

Wednesday I took a Minocycline tablet as I want to go on AP again (don't know

why i gave up before) and work my way up to 100mg. Boy do I feel like dying now

! I don't know if it's from the Mino or the cookie I ate (i got desperate for a

treat) - I always suffer if i eat grains/sugar. Or maybe it's cos i took a

herbal liver detox pill which i noticed has made me sick in the past. I guess

with so many drugs in me, it's easy to feel sick once you try any sort of detox

method. I'm hoping like hell the Mino does me some good again as I hate

Methotrexate and all my docs are pushing hard for me to get on it ASAP. They

think I am nuts for not towing the line.

I wish I knew another drug that could control the pain without too many side

effects, but i don't think they exist. My next stop would probably be cortisone,

which I am loathe to try , but know it works well for pain. I used to take

Celebrex for years and it worked really well... had to stop due an ulcer

developing.

I don't expect anyone to have exactly the right answers - i just need to talk

to someone - i'm so lonely on my own at home and having panic attacks due to

excessive pain and being frightened of dying.

thanks...

Leonie

March 5, 2009

Thanks so much Gail. Is the Mino helping you with all your diseases, and how

long have you been on it ? You have some awful things to deal with. Most of my

problem is that I have a dreadful dislike and intense fear of drugs. I hate

them all, but there is nothing to do with these diseases we have, except to

medicate them big time. Thanks again for your message of support. Feel free to

email me privately also.

Leonie

>

> Leonie - There is so much going on with you right now. We have to be strong,

> and it is definately not easy, I can tell you that. I have diffuse

> scleroderma, sjogrens, raynauds, and rheumatory arthritis.

>

> Hang in there, and though I am not a doctor, I would advise you to stick with

> the minocycline, which is what I would do given your situation.

>

> Many have judged me presently, and in the past for chosing minocycline to

> possibly take me to remission and make me feel better, and those that have

taken

> another path are sometimes quick to judge us.

>

> I am thinking of you and you are in my prayers. Be strong, and hang in

> there.

>

> Feel free to e-mail me directly.

>

> Gail

> **************A Good Credit Score is 700 or Above. See yours in just 2 easy

> steps!

>

(http://pr.atwola.com/promoclk/100126575x1219957551x1201325337/aol?redir=http:%2\

F%2Fwww.freecreditreport.com%2Fpm%2Fdefault.aspx%3Fsc%3D668072%26hmpgID

> %3D62%26bcd%3DfebemailfooterNO62)

>

March 5, 2009

Leonie,

maybe a combination of things made you feel bad. See if you can go one day

without any meds but the mino and see if it makes a different. If your pain is

too high maybe take only half of the pain meds.

I am sorry you feel so bad, my daughter had two partial hip replacements done

and about four weeks later she broke her thigh and had to have a steel rod put

in. She is still in bed trying to get well. I know she calls me every day

because there is nothing for her to do. It helps her some. Her husband works and

she has someone come in every day to get her to the bathroom and get some food

ready for her.

We talk to each other per msg almost everyday She still can not walk and

the surgery was 7 weeks ago. Tomorrow I am taking her to the doctor.

I hope you feel better soon. I think sticking with the antibiotic may help after

a little while. I will pray for you.

Regards,

Eva

From: mumpup2000 <leoniecent@...>

Subject: rheumatic can someone help me - Cooky ?

rheumatic

Date: Thursday, March 5, 2009, 8:12 PM

Hello list members, I'm in bad shape and feel desperate right now. Since my knee

replacement operation, i've been on strong pain killers (oxycontin, tramadol,

codeine) and they make me feel nauseous and dizzy all the time. Also the op made

most of my other joints flare up badly due to the disruption to my phsyiology,

or something? so now I'm a total wreck. Before that, my symptoms weren't so bad

and I could get by ok. I guess however that I would have gone downhill at some

stage - just delaying the inevitable. I am on a strict diet of almost nothing at

all except salad and tuna, with a bit of fruit, and losing weight real fast it's

scary - that doesn't help with my energy of course. I don't know what else to

do, everything i eat seems to make my RA worse.