My Rheumy visit

[Guest guest]

Hi ,

I hope you are in a complete remission very soon without the need for any

tablets.

One thing ... iron supplementation. I've read that intake of too much Iron

can be a bad thing with Stills. I'm not sure why but perhaps somebody knows.

I was actually on Iron tablets before my onset began (dont know why I just

thought it would help me look healthier I guess), but whether there is a

link I have no idea.

Steve

My rheumy visit

Hello to all my dear Stilligan friends - so much has been going on. So

sorry to hear of flare-ups, etc. To all who are experiencing disappointing

news right now with Still's, etc. keep reaching out, and let the support and

love of this group carry you through. That is what we do here at

Stilligan's, and take it from me who has received much support here.....the

care, support, humor, intellligent research WILL get you through each day.

Went to my second visit with my new rheumy in Birmingham. My blood work

came back in very good shape (only slightly anemic - any good advice on

anemia? I already take iron pills), and I have had no joint damage from

Still's. He believes that the Still's is " not active " right now - I asked

directly if I was in remission and he said I don't know yet. He believes

that my soreness, fatigue, and nausea may be MTX and/or fibromyalgia. I am

not on any pred. right now. To see what is causing my troubles, we are

reducing the MTX from 15mg/wk. to 10mg/wk. He said if the Still's is not in

remission I may flare or I may simply feel a little better soon. Then, in 6

wks. I will go back, and if I'm doing well will reduce the MTX more. He has

not ruled out fibro - just need to see if the MTX is causing the problems.

I also asked if I should stop using 2-4 Darvocets/day for soreness/chills

and he said no. He said I certainly don't want to keep you on pain killers

forever, but I don't want to change too much too fast. I told him about

taking myself off those slowly, and stayed off them for a week, and the

soreness and chills made me nauseated, and I became a very mean mom and

wife. He said stay on them for now. I'm also staying on the

anti-depressants. He said I don't want to mess with those either. I had

depression prior to Still's so that will be the last med to change, I

believe, if ever.

This was an interesting thing I learned. I have had the light, salmon rash

on my calves since I got Still's. I've been very concerned about that so I

asked about it. He gave me a long medical term for it (which I didn't write

down and I regret - if anyone is interested in the term I'll call the nurse

and get it), and said it will cause me no trouble and I probably will have

it the rest of my life - kind of an after effect or something?

Anyways, wondering if anyone has had quick reactions to MTX reductions and

would like to share? I'm happy, and nervous at the same time - I might be

feeling a little better soon or flaring. Thanks for listening, and again to

all those flaring badly, please fight. We are here to fight with

you....Love, The Dutchess of Dixie, Chris

_________________________________________________________________

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The materials and information contained in this message are not intended to

replace the services of a trained health professional or to be a substitute

for medical advice of physicians and/or other health care professionals. The

International Still's Disease Foundation is not engaged in rendering medical

or professional medical services. You should consult your physician on

specific medical questions, particularly in matters requiring diagnosis or

medical attention. The International Still's Disease Foundation makes no

representations or warranties with respect to any treatment, action,

application, medication or preparation by any person following the

information offered or provided within this support form.

ion by any person following the information offered or provided within this

support form.

[Guest guest]

Thanks Steve! I'm going to do a little research on the iron subject - will

post anything I learn of significance. Hope you are having a good

day....Love, The Dutchess of Dixie, Chris

>From: " " <stevo.clark@...>

>>

>Hi ,

>

>I hope you are in a complete remission very soon without the need for any

>tablets.

>

>One thing ... iron supplementation. I've read that intake of too much Iron

>can be a bad thing with Stills. I'm not sure why but perhaps somebody

>knows.

>

>I was actually on Iron tablets before my onset began (dont know why I just

>thought it would help me look healthier I guess), but whether there is a

>link I have no idea.

>

>Steve

>

>

>

>

> My rheumy visit

>

>

>Hello to all my dear Stilligan friends - so much has been going on. So

>sorry to hear of flare-ups, etc. To all who are experiencing disappointing

>news right now with Still's, etc. keep reaching out, and let the support

>and

>love of this group carry you through. That is what we do here at

>Stilligan's, and take it from me who has received much support here.....the

>care, support, humor, intellligent research WILL get you through each day.

>

>Went to my second visit with my new rheumy in Birmingham. My blood work

>came back in very good shape (only slightly anemic - any good advice on

>anemia? I already take iron pills), and I have had no joint damage from

>Still's. He believes that the Still's is " not active " right now - I asked

>directly if I was in remission and he said I don't know yet. He believes

>that my soreness, fatigue, and nausea may be MTX and/or fibromyalgia. I am

>not on any pred. right now. To see what is causing my troubles, we are

>reducing the MTX from 15mg/wk. to 10mg/wk. He said if the Still's is not

>in

>remission I may flare or I may simply feel a little better soon. Then, in

>6

>wks. I will go back, and if I'm doing well will reduce the MTX more. He

>has

>not ruled out fibro - just need to see if the MTX is causing the problems.

>

>I also asked if I should stop using 2-4 Darvocets/day for soreness/chills

>and he said no. He said I certainly don't want to keep you on pain killers

>forever, but I don't want to change too much too fast. I told him about

>taking myself off those slowly, and stayed off them for a week, and the

>soreness and chills made me nauseated, and I became a very mean mom and

>wife. He said stay on them for now. I'm also staying on the

>anti-depressants. He said I don't want to mess with those either. I had

>depression prior to Still's so that will be the last med to change, I

>believe, if ever.

>

>This was an interesting thing I learned. I have had the light, salmon rash

>on my calves since I got Still's. I've been very concerned about that so I

>asked about it. He gave me a long medical term for it (which I didn't

>write

>down and I regret - if anyone is interested in the term I'll call the nurse

>and get it), and said it will cause me no trouble and I probably will have

>it the rest of my life - kind of an after effect or something?

>

>Anyways, wondering if anyone has had quick reactions to MTX reductions and

>would like to share? I'm happy, and nervous at the same time - I might be

>feeling a little better soon or flaring. Thanks for listening, and again

>to

>all those flaring badly, please fight. We are here to fight with

>you....Love, The Dutchess of Dixie, Chris

>

>_________________________________________________________________

>Store more e-mails with MSN Hotmail Extra Storage – 4 plans to choose from!

>http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/

>

>

>

>Visit the Still's Disease Message Board

>http://disc.server.com/Indices/148599.html

>

>The materials and information contained in this message are not intended to

>replace the services of a trained health professional or to be a substitute

>for medical advice of physicians and/or other health care professionals.

>The

>International Still's Disease Foundation is not engaged in rendering

>medical

>or professional medical services. You should consult your physician on

>specific medical questions, particularly in matters requiring diagnosis or

>medical attention. The International Still's Disease Foundation makes no

>representations or warranties with respect to any treatment, action,

>application, medication or preparation by any person following the

>information offered or provided within this support form.

>

>ion by any person following the information offered or provided within this

>support form.

>

>

>

[Guest guest]

I was always told that vitamin C helps the body to absorb the iron.

Maybe you already do this but just a thought. Melt

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

From: " Todd " <christodd67@...>

(only slightly anemic - any good advice on

> anemia? I already take iron pills),

[Guest guest]

Glad to hear you got some good news .I had anemia too was actually

pretty bad mine caused dizziness almost to point of passing out,but mines

also better actually was told it was gone but I wasn't convinced lol.Also I

decreased my MTX awhile back I was getting really bad headaches which I was

almost positive was caused by the drug,didn't really seem to make big

difference but headaches are less severe.Take care have a great day eh.

d.Canada

My rheumy visit

> Hello to all my dear Stilligan friends - so much has been going on. So

> sorry to hear of flare-ups, etc. To all who are experiencing

disappointing

> news right now with Still's, etc. keep reaching out, and let the support

and

> love of this group carry you through. That is what we do here at

> Stilligan's, and take it from me who has received much support

here.....the

> care, support, humor, intellligent research WILL get you through each day.

>

> Went to my second visit with my new rheumy in Birmingham. My blood work

> came back in very good shape (only slightly anemic - any good advice on

> anemia? I already take iron pills), and I have had no joint damage from

> Still's. He believes that the Still's is " not active " right now - I asked

> directly if I was in remission and he said I don't know yet. He believes

> that my soreness, fatigue, and nausea may be MTX and/or fibromyalgia. I

am

> not on any pred. right now. To see what is causing my troubles, we are

> reducing the MTX from 15mg/wk. to 10mg/wk. He said if the Still's is not

in

> remission I may flare or I may simply feel a little better soon. Then, in

6

> wks. I will go back, and if I'm doing well will reduce the MTX more. He

has

> not ruled out fibro - just need to see if the MTX is causing the problems.

>

> I also asked if I should stop using 2-4 Darvocets/day for soreness/chills

> and he said no. He said I certainly don't want to keep you on pain

killers

> forever, but I don't want to change too much too fast. I told him about

> taking myself off those slowly, and stayed off them for a week, and the

> soreness and chills made me nauseated, and I became a very mean mom and

> wife. He said stay on them for now. I'm also staying on the

> anti-depressants. He said I don't want to mess with those either. I had

> depression prior to Still's so that will be the last med to change, I

> believe, if ever.

>

> This was an interesting thing I learned. I have had the light, salmon

rash

> on my calves since I got Still's. I've been very concerned about that so

I

> asked about it. He gave me a long medical term for it (which I didn't

write

> down and I regret - if anyone is interested in the term I'll call the

nurse

> and get it), and said it will cause me no trouble and I probably will have

> it the rest of my life - kind of an after effect or something?

>

> Anyways, wondering if anyone has had quick reactions to MTX reductions and

> would like to share? I'm happy, and nervous at the same time - I might be

> feeling a little better soon or flaring. Thanks for listening, and again

to

> all those flaring badly, please fight. We are here to fight with

> you....Love, The Dutchess of Dixie, Chris

>

> _________________________________________________________________

> Store more e-mails with MSN Hotmail Extra Storage - 4 plans to choose

from!

> http://click.atdmt.com/AVE/go/onm00200362ave/direct/01/

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

to replace the services of a trained health professional or to be a

substitute for medical advice of physicians and/or other health care

professionals. The International Still's Disease Foundation is not engaged

in rendering medical or professional medical services. You should consult

your physician on specific medical questions, particularly in matters

requiring diagnosis or medical attention. The International Still's Disease

Foundation makes no representations or warranties with respect to any

treatment, action, application, medication or preparation by any person

following the information offered or provided within this support form.

>

> ion by any person following the information offered or provided within

this support form.

>

>

>

[Guest guest]

I shall give it a try Melt! I do take Vit C, but maybe if I ate more vit c

rich foods - worth a try. I'm pretty certain why I'm having some trouble

with anemia - female issues and MTX. Whatever the culprit I plan on getting

my iron levels up - whatever it takes. Take care...Love, The Dutchess of

Dixie, Chris

>From: " mellymelt " <mellymelt@...>

>

> I was always told that vitamin C helps the body to absorb the iron.

>Maybe you already do this but just a thought. Melt

>

>

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

>From: " Todd " <christodd67@...>

> (only slightly anemic - any good advice on

> > anemia? I already take iron pills),

>

>

_________________________________________________________________

Click, drag and drop. My MSN is the simple way to design your homepage.

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[Guest guest]

Thursday, I saw my new Rheumy and he's given me some good news. It seems

that my RA is in remission! I've gone from 10 mg of Prednisone to 5 mg as of

today and stopped taking Lodine because it causes a lot of my indigestion.

I've been having problems with my intestines gurgling and hurting for a few

months and nobody knows why. I've also stopped taking my daily dose of

Prilosec. I'm also changing from Morphine Sulphate to Methocodone (sp) so I

won't have to drive to town every month to pick up the script. I'm going to

start Enbrel soon, so I sure hope this works.

--

Dennis in eastexas

[Guest guest]

Congratulations on your good news, Dennis! I hope that the Enbrel

works as well for you as it does for me.

Sue

On May 24, 2009, at 1:10 PM, Dennis W wrote:

> Thursday, I saw my new Rheumy and he's given me some good news. It

> seems

> that my RA is in remission! I've gone from 10 mg of Prednisone to 5

> mg as of

> today and stopped taking Lodine because it causes a lot of my

> indigestion.

> I've been having problems with my intestines gurgling and hurting

> for a few

> months and nobody knows why. I've also stopped taking my daily dose of

> Prilosec. I'm also changing from Morphine Sulphate to Methocodone

> (sp) so I

> won't have to drive to town every month to pick up the script. I'm

> going to

> start Enbrel soon, so I sure hope this works.

[Guest guest]

why would you need enbrel if you are in remission?? makes no sense.

monique

Thursday, I saw my new Rheumy and he's given me some good news. It seems

that my RA is in remission! I've gone from 10 mg of Prednisone to 5 mg as of

today and stopped taking Lodine because it causes a lot of my indigestion.

I've been having problems with my intestines gurgling and hurting for a few

months and nobody knows why. I've also stopped taking my daily dose of

Prilosec. I'm also changing from Morphine Sulphate to Methocodone (sp) so I

won't have to drive to town every month to pick up the script. I'm going to

start Enbrel soon, so I sure hope this works.

[Guest guest]

Hi- Where you posted:

I've been having problems with my intestines gurgling and hurting for a few

months and nobody knows why.

I had years of intestinal pain and upset stomach and sores that would just show

up often on my arms and legs. My Rheumy told me that it was Celiac Disease

(even though I had tested negative and am on a gluten free diet). He started me

on Immuran and soon after, my GI is vastly improved! Yay! Little GI pain,

formed stools, and few sores. Working for me. - in south Louisiana

>

> why would you need enbrel if you are in remission?? makes no sense.

>

> monique

>

>

> Thursday, I saw my new Rheumy and he's given me some good news. It seems

> that my RA is in remission! I've gone from 10 mg of Prednisone to 5 mg as of

> today and stopped taking Lodine because it causes a lot of my indigestion.

> I've been having problems with my intestines gurgling and hurting for a few

> months and nobody knows why. I've also stopped taking my daily dose of

> Prilosec. I'm also changing from Morphine Sulphate to Methocodone (sp) so I

> won't have to drive to town every month to pick up the script. I'm going to

> start Enbrel soon, so I sure hope this works.

>

[Guest guest]

I hope he knows what he's talking about, Dennis, and that things work

out for you to get off the prednisone. Keep us posted.

Sue

On May 25, 2009, at 9:13 PM, Dennis W wrote:

> I knew it was some kind of " codone " and yes, it can be called in. lol

> He also said the Enbrel is to help me get off Prednisone. I have to

> trust

> that he knows what he's talking about.

>

> Dennis in eastexas

>

[Guest guest]

Hi Doreen,

I hope your prayers are answered. We all need hope in our lives. I wish you all

that you wish yourself.

God Bless

From: Mimi <mimi212@...>

Subject: [ ] Re: My Rheumy visit

Date: Tuesday, 26 May, 2009, 1:46 PM

Hi - I've read on the Enbrel website that it can put us into

remission, but as soon as the medication is stopped, symptoms can return.

" Remission " is just the absence of disease activity. Enbrel is a TNF BLOCKER -

TNF being one of the culprits for RA as our body can make too much of it. So, it

makes sense that as long as this excess of TNF is blocked, we can be in

remission, but if we stop blocking it by discontinuing the medication, symptoms

will return.

There is no cure for RA. Only treatments. Hope this helps to answer your

question.... .Doreen

PS - My FIRST shipment of Enbrel will be here in TWO MORE DAYS!! I can't wait! I

have so much hope!! Please pray this will work for me.

why would you need enbrel if you are in remission?? makes no sense.

monique

[Guest guest]

My rheumy will not say I'm in remission, I guess because he thinks the

symptoms would return if I stopped the Enbrel.

Sue

On May 26, 2009, at 8:46 AM, Mimi wrote:

> Hi - I've read on the Enbrel website that it can put us into

> remission, but as soon as the medication is stopped, symptoms can

> return.

>

> " Remission " is just the absence of disease activity. Enbrel is a TNF

> BLOCKER - TNF being one of the culprits for RA as our body can make

> too much of it. So, it makes sense that as long as this excess of

> TNF is blocked, we can be in remission, but if we stop blocking it

> by discontinuing the medication, symptoms will return.

>

[Guest guest]

i know that doreen but if one is in remission then usually one would

stay on the regimen that out one in remission not do something

different. adding something different indicates to me that the disease

is still active and therefore requiring better management which is not

remission.

monique

Hi - I've read on the Enbrel website that it can put us into

remission, but as soon as the medication is stopped, symptoms can return.

" Remission " is just the absence of disease activity. Enbrel is a TNF

BLOCKER - TNF being one of the culprits for RA as our body can make too

much of it. So, it makes sense that as long as this excess of TNF is

blocked, we can be in remission, but if we stop blocking it by

discontinuing the medication, symptoms will return.

There is no cure for RA. Only treatments. Hope this helps to answer your

question....

..Doreen

PS - My FIRST shipment of Enbrel will be here in TWO MORE DAYS!! I can't

wait! I have so much hope!! Please pray this will work for me.

why would you need enbrel if you are in remission?? makes no sense.

monique

[Guest guest]

and Doreen,

It sounds like Dennis' rheumatologist believes Dennis is in a

drug-induced remission, BUT he wants Dennis off the prednisone he has

been taking for many years. If he removes the prednisone, Dennis may

or may not remain in remission on methotrexate alone. The

rheumatologist may be thinking that it's going to be easier for Dennis

to discontinue prednisone and remain in remission if Enbrel is added

(or Enbrel is used alone).

Not an MD

On Wed, May 27, 2009 at 6:05 AM, Mimi <mimi212@...> wrote:

>

>

> Hi - I agree - you would think that if someone was in remission they

> would stay on the regimen that helped to get them there - kinda like leave

> well enough alone. But in some of 's recent posts on remission, it seems

> that some doctors would choose to lower or even discontinue certain

> medications once the patient has achieved remission.

>

> Why a doctor would choose to ADD a medication if someone is in remission is

> beyond me. Sounds like a good question for the Rheumy.

>

> Doreen