Re: Deb

[Guest guest]

Hi Deb:

One of my best friends just went through surgery to

remove adhesions from around her colon. Believe me, I

know the pain you must be experiencing - I have never

seen anyone in as much pain as she was. She could

barely move around and could not straighten up. She

was in such agony for weeks before they could figure

out what was wrong. She couldn't eat or even drink

anything without severe, severe pain in her

groin/abdomen area. She finally found a doctor who

was willing to do an exploratory laparotomy on her -

they had done upper GI, lower GI, ultrasound, MRI, you

name it, they had done it and could not figure out

what was wrong. When they finally went in, her entire

colon was wrapped in adhesions - no wonder the pain

and why she was having so much bowel trouble. Since

the surgery, she is doing so good, she has no more

pain, she is able to eat again finally, and does not

have to live anymore on prune juice and mineral oil!

I hope that when you go in for surgery to remove your

adhesions that you heal up as well and as fast as she

has.

Kathe in CA

__________________________________________________

[Guest guest]

<PRE>glad to see you posting. don't overdo it honey. we love you. kathy in il

[Guest guest]

Debs has been in my daily prayers since her nightmare started. I'm very

worried about her and hope they can get this infection under control.

You can count me in on flowers.

a

> Hi All,

>

> I just spoke with Deb, and she sounded really awful. She said she's very

> afraid, and asked me if I'd ask the group to pray for her.

>

> As Judy said, she had a lot of infection in the knee when they took it out.

> She's in a lot of pain, but they have her on continuous morphine as well as

> a pump, and percocet for breakthrough pain. The physical therapist got her

> up to walk today, which was a mistake, and the Dr. was mad about it. It

> caused the pain to flare up, and the would started to bleed. She's also

> having trouble controlling her blood sugar for some reason. The infectious

> disease dr. said she will be on the IV antibiotics for at least 6 more

> months.

>

> Would anyone be interested in going in on some flowers for her? After my

> trip I can't afford to buy flowers on my own, but I would love to chip in

> toward some as a group. I think Deb could really use the cheering up right

> now.

>

> Again, her phone number is 954-545-5494, but you can only call until 9PM

> Eastern.

>

> Much love,

>

> Carol

[Guest guest]

Carol: I would be more than happy to go in on flowers for Debs. I have a

suggestion though - I always like to get a living plant instead of flowers. It

is something that can be enjoyed long after the person is home. But I'll go

along with whatever everyone wants to do. Just email me the address of whoever

is taking up the collection and it will be there. Or........I can put it on a

card or I have a great flower shop here that I have been dealing with here for

years and I am able to order the plants or flowers and pay later. Everyone

could send the flower shop whatever amount they would like to on the bill. I

know the daughter of the owners and she works the store that is nearest to me.

She is a single parent of two and we met because one of her kids was in my

grandson Richies's class in Kindergarten and first grade.

Let me know how ever it goes and I will do my part. Debs is an important part

of our family and has given so much of herself and it would be nice to show her

how we feel.

Positive thoughts....... Jan in CA +/:=)

Carol wrote:Hi All,

I just spoke with Deb, and she sounded really awful. She said she's very

afraid, and asked me if I'd ask the group to pray for her.

As Judy said, she had a lot of infection in the knee when they took it out.

She's in a lot of pain, but they have her on continuous morphine as well as

a pump, and percocet for breakthrough pain. The physical therapist got her

up to walk today, which was a mistake, and the Dr. was mad about it. It

caused the pain to flare up, and the would started to bleed. She's also

having trouble controlling her blood sugar for some reason. The infectious

disease dr. said she will be on the IV antibiotics for at least 6 more

months.

Would anyone be interested in going in on some flowers for her? After my

trip I can't afford to buy flowers on my own, but I would love to chip in

toward some as a group. I think Deb could really use the cheering up right

now.

Again, her phone number is 954-545-5494, but you can only call until 9PM

Eastern.

Much love,

Carol

[Guest guest]

Sure, how can we do this?

Suzanne

[ ] Deb

> Hi All,

>

> I just spoke with Deb, and she sounded really awful. She said she's very

> afraid, and asked me if I'd ask the group to pray for her.

>

> As Judy said, she had a lot of infection in the knee when they took it

out.

> She's in a lot of pain, but they have her on continuous morphine as well

as

> a pump, and percocet for breakthrough pain. The physical therapist got

her

> up to walk today, which was a mistake, and the Dr. was mad about it. It

> caused the pain to flare up, and the would started to bleed. She's also

> having trouble controlling her blood sugar for some reason. The

infectious

> disease dr. said she will be on the IV antibiotics for at least 6 more

> months.

>

> Would anyone be interested in going in on some flowers for her? After my

> trip I can't afford to buy flowers on my own, but I would love to chip in

> toward some as a group. I think Deb could really use the cheering up

right

> now.

>

> Again, her phone number is 954-545-5494, but you can only call until 9PM

> Eastern.

>

> Much love,

>

> Carol

>

>

>

>

>

>

[Guest guest]

Hi...Deb called me this afternoon and said she went through her first surgery

on her knee...they were able to move, skin, muscle, and fat(her words ..not

mine)sucessfully to the area from the side of her calf......she said it was

supposed to take 2hours and took almost 5.....but Ron told her the surgeons

came out smiling together and happily told him she will have a decent looking

leg after all...She is in a lot of pain but looking forward for next surgery

by Thurs or Fri to finish it up and then she should be able to go home next

week if all goes well.She sounded very happy but tired ......She will have to

wait a while before they can bput the knee back in but at least now it has

tissue closing it and muscle ready for the joint.....Have a less pain

night.Judy in AZ

[Guest guest]

<PRE>feel better soon carol. you have been running alot lately. kathy in il

[Guest guest]

<PRE>thanks for the update on deb. she sure is strong!!! as we all are. even

though we may not feel like it. hang in there debs, i will keep praying for

you. kathy in il

[Guest guest]

Thanks for the update.

Hope you feel better tomorrow Carol.((((((((((hugs)))))))))))

a

> Hi All,

>

> I just got out of class, and had a voice message from Deb. She said she got

> out of the first surgery with the plastic surgeon, and is resting tonight.

> She said she should be going home by next week, which is great news! I'll

> let you know more when I talk to her tomorrow.

>

> I'm in a flare right now, so I'm going to hobble back to bed. Hope everyone

> is having a good evening.

>

> Love and hugs,

>

> Carol

>

>

>

>

>

[Guest guest]

Wonderful news, thanks for the update.

Suzanne

Re: [ ] Deb

> Hi...Deb called me this afternoon and said she went through her first

surgery

> on her knee...they were able to move, skin, muscle, and fat(her words

...not

> mine)sucessfully to the area from the side of her calf......she said it

was

> supposed to take 2hours and took almost 5.....but Ron told her the

surgeons

> came out smiling together and happily told him she will have a decent

looking

> leg after all...She is in a lot of pain but looking forward for next

surgery

> by Thurs or Fri to finish it up and then she should be able to go home

next

> week if all goes well.She sounded very happy but tired ......She will have

to

> wait a while before they can bput the knee back in but at least now it

has

> tissue closing it and muscle ready for the joint.....Have a less pain

> night.Judy in AZ

>

>

>

[Guest guest]

This is very encouraging Judy. Thanks for letting us know.

a

> Hi...Deb called me this afternoon and said she went through her first surgery

> on her knee...they were able to move, skin, muscle, and fat(her words ..not

> mine)sucessfully to the area from the side of her calf......she said it was

> supposed to take 2hours and took almost 5.....but Ron told her the surgeons

> came out smiling together and happily told him she will have a decent looking

> leg after all...She is in a lot of pain but looking forward for next surgery

> by Thurs or Fri to finish it up and then she should be able to go home next

> week if all goes well.She sounded very happy but tired ......She will have to

> wait a while before they can bput the knee back in but at least now it has

> tissue closing it and muscle ready for the joint.....Have a less pain

> night.Judy in AZ

>

>

>

[Guest guest]

Carol,

I hope you are able to go see her. It just makes me sick what is happening

to her.

You would cheer her up a lot.

Good to hear your flare is subsiding.

All the articles I¹m posting are coming from the annual Scientific Meeting

of the American College of Rheumatology. There are hundreds of abstracts

available and I¹m trying to wade through them and find ones that apply to

our group. If anyone wants to browse through them, they are available at

http://www.rheumatology.org

Click on abstracts. The convention is over tomorrow. There is a lot of

information worldwide that is coming out of this annual meeting.

a

> Hi All,

>

> I spoke with Deb yesterday, and the news wasn't too good. She had surgery

> to retry the skin graft procedure, and she said she stopped breathing and

> they put her on a respirator. When I talked to her later in the afternoon

> she was back in her room, but frightened by the experience. She said she

> was told she'd probably remain in the hospital until Thanksgiving.

>

> I'm considering a surprise visit late this week or early next week. I have

> a family member I want to meet to get genealogical information from in

> Miami, and I could combine the two into a trip. I think Deb needs cheering

> up and needs to know we love and support her, although I'll have to take

> cues from her as to how long she can endure company. I don't want to tire

> her excessively.

>

> My flare has eased a little bit, but I can still tell the Remicade is

> wearing off. It's going to be a long two weeks until my next infusion.

>

> I hope everyone is doing fairly well. a and , you've sent some

> great articles recently. Thanks!

>

> Love to all,

>

> Carol

>

>

>

>

>

[Guest guest]

Thanks, Carol. Have a good, safe trip.

Please do send a special greeting from me to Debs. It's very hard to

hear that she still isn't doing well. I hope you can give us better news

tomorrow.

[ ] Deb

> Hi All,

>

> I spoke with Deb just for a second. She sounded pretty bad, and said

she

> was having a rough day. She did say it was fine if I stop by tomorrow

> afternoon for a short time. I don't want to tire her out too much. I

will

> give her a gentle hug from the group. I leave for Ft. Lauderdale in

the

> morning and I'm bringing my laptop, so I'll let you know tomorrow

night how

> she's doing.

>

> My love to all,

>

> Carol

[Guest guest]

Carol,

I wish you had better news. Please tell her that she is in my prayers

daily. It¹s great that you are able to visit her. I¹m sure your visit will

put a smile on her face.

a

> Hi All,

>

> I spoke with Deb just for a second. She sounded pretty bad, and said she

> was having a rough day. She did say it was fine if I stop by tomorrow

> afternoon for a short time. I don't want to tire her out too much. I will

> give her a gentle hug from the group. I leave for Ft. Lauderdale in the

> morning and I'm bringing my laptop, so I'll let you know tomorrow night how

> she's doing.

>

> My love to all,

>

> Carol

>

>

>

>

>

[Guest guest]

(((((Debbie))))) Welcome back, so good to see

you. My prayers continue for a speedy recovery,

Love,

hug...Joy

[ ] Digest

Hi All,

Let's see,Happy Halloween, Happy Thanksgiving, Merry Christmas & Happy New

Year. I am still alive but still currently incarcerated in the inpatient

rehab unit. They expect me to be an inmate here until at least 2-4-03. At

this time, I am currently unable to walk, I was just able to sit up on

Wednesday and today they were to stand me up, but I have developed a bladder

infection (can't imagine--------been on a catheter in 10-7-02) and the

symptoms made physical therapy just too painful. So I have yet another

medication added to my schedule and with any luck I can try again tomorrow.

Yikes, I fear the longer I stay at this facility, the more chance they have

of really killing me. I still have memory problems, but my family has been a

Godsend. Even my sister came from Chicago. Unfortunately, I don't remember

any of her visit or her even being here.

Please someone take me off digest as I am unable to open anything. Thank you.

As I am now in rehab, I will try to keep more on top of my mail. This has

been the hardest thing in my life I have ever gone thru and some of the work

has not even started yet. Thank you all for your good wishes and prayers.

They were much needed and greatly appreciated.

Hope to talk to you all soon.

Debs in FL

[Guest guest]

Hi Deb,

I am so glad to hear that you will possibly be coming home soon! Praise God

for his blessings. It will be so wonderful for you to be back home, with

your family and among familar surroundings.

in MN

[Guest guest]

<PRE>that will be wonderful debs!!! keep fighting the fight!! kathy in il

[Guest guest]

Hi .

I don't know what it is called over here but I have tried heaps over the years.

I am glad to hear that you have no side effects from it & is working for you.

I dont know what I will be able to use soon as the doctors now think I have

Leukaemia on top of every thing else. I find out about mid April. I have to wait

that long to see the Haematologist at the Oncology Unit. The waiting is killing me.

My white cell count has multiplied (28.5) in 4 months. I dont feel sick at all just

very, very tired all the time.

Thank's for your thought's.

Deb. (Aussie) xx

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

From: DeNicola

Rheumatoid Arthritis

Sent: Tuesday, March 18, 2003 1:16 AM

Subject: Deb

Hi Deb, I saw that you have Crohn's disease. Have you tried Remicade? It was originally approved for Crohn's but now is also approved for arthritis. I have been on it for almost 3 years and it works really well for me. (it's the only med I don't have side effects from).

Take care,

in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi > >I have been on Methotrexate for a few years now & have no side effects form it. >I was having tablet form at first but because I have Crohn's Disease as well it was not working. >After a few months I was put on injections & I have been good. >I do not say that this is the one for you but I would make it the last resort in medications. >It can have some very bad side effects in the liver area. It can cause Focal Nodule Hypoplasia. >"I think that is how you spell it". Basically it is tumours & enlargement of the liver. >I know this from a friend I met at the specialist's room's who has it from the Methotrexate. >She is only 27 >I am also on Prednisone & Placquenil but have been having to see an eye specialist every >6 months as Placquenil can cause Glaucoma. My right eye has the start of Glaucoma & that >only started 3 years after starting the tablets. > >Stay well all. >Deb.

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[Guest guest]

I'm on Remicade for RA and I have to have infusions every 8 weeks, but I think for Crohn's disease you only need three infusions and it is cured. Good luck and God bless.

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

From: DeNicola

Rheumatoid Arthritis

Sent: Monday, March 17, 2003 7:16 AM

Subject: Deb

Hi Deb, I saw that you have Crohn's disease. Have you tried Remicade? It was originally approved for Crohn's but now is also approved for arthritis. I have been on it for almost 3 years and it works really well for me. (it's the only med I don't have side effects from).

Take care,

in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi > >I have been on Methotrexate for a few years now & have no side effects form it. >I was having tablet form at first but because I have Crohn's Disease as well it was not working. >After a few months I was put on injections & I have been good. >I do not say that this is the one for you but I would make it the last resort in medications. >It can have some very bad side effects in the liver area. It can cause Focal Nodule Hypoplasia. >"I think that is how you spell it". Basically it is tumours & enlargement of the liver. >I know this from a friend I met at the specialist's room's who has it from the Methotrexate. >She is only 27 >I am also on Prednisone & Placquenil but have been having to see an eye specialist every >6 months as Placquenil can cause Glaucoma. My right eye has the start of Glaucoma & that >only started 3 years after starting the tablets. > >Stay well all. >Deb.

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[Guest guest]

On another board I follow there are Australians who post fairly often. One of them was in a clinical study for Remicade for Rheumatoid Arthritis. There may be some for Crohn's disease also. You might ask your rheumatologist about clinical trials. Good luck and God bless.

Grandpavan1927

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

From: Debbie

Rheumatoid Arthritis

Sent: Monday, March 17, 2003 7:43 AM

Subject: Re: Deb

Hi .

I don't know what it is called over here but I have tried heaps over the years.

I am glad to hear that you have no side effects from it & is working for you.

I dont know what I will be able to use soon as the doctors now think I have

Leukaemia on top of every thing else. I find out about mid April. I have to wait

that long to see the Haematologist at the Oncology Unit. The waiting is killing me.

My white cell count has multiplied (28.5) in 4 months. I dont feel sick at all just

very, very tired all the time.

Thank's for your thought's.

Deb. (Aussie) xx

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

From: DeNicola

Rheumatoid Arthritis

Sent: Tuesday, March 18, 2003 1:16 AM

Subject: Deb

Hi Deb, I saw that you have Crohn's disease. Have you tried Remicade? It was originally approved for Crohn's but now is also approved for arthritis. I have been on it for almost 3 years and it works really well for me. (it's the only med I don't have side effects from).

Take care,

in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi > >I have been on Methotrexate for a few years now & have no side effects form it. >I was having tablet form at first but because I have Crohn's Disease as well it was not working. >After a few months I was put on injections & I have been good. >I do not say that this is the one for you but I would make it the last resort in medications. >It can have some very bad side effects in the liver area. It can cause Focal Nodule Hypoplasia. >"I think that is how you spell it". Basically it is tumours & enlargement of the liver. >I know this from a friend I met at the specialist's room's who has it from the Methotrexate. >She is only 27 >I am also on Prednisone & Placquenil but have been having to see an eye specialist every >6 months as Placquenil can cause Glaucoma. My right eye has the start of Glaucoma & that >only started 3 years after starting the tablets. > >Stay well all. >Deb.

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[Guest guest]

Harold,

Coupld you please tell me the the name of that Other board

Many Thanks

" Harold Van Tuyl " <hvantuyl@...> on 18/03/2003 07:00:41

Please respond to Rheumatoid Arthritis

Rheumatoid Arthritis

cc: (bcc: Gregg/NSW/QBE/AU)

Subject: Re: Deb

On another board I follow there are Australians who post fairly often. One of

them was in a clinical study for Remicade for Rheumatoid Arthritis. There may

be some for Crohn's disease also. You might ask your rheumatologist about

clinical trials. Good luck and God bless.

Grandpavan1927

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

From: Debbie

Rheumatoid Arthritis

Sent: Monday, March 17, 2003 7:43 AM

Subject: Re: Deb

Hi .

I don't know what it is called over here but I have tried heaps over the

years.

I am glad to hear that you have no side effects from it & is working for you.

I dont know what I will be able to use soon as the doctors now think I have

Leukaemia on top of every thing else. I find out about mid April. I have to

wait

that long to see the Haematologist at the Oncology Unit. The waiting is

killing me.

My white cell count has multiplied (28.5) in 4 months. I dont feel sick at all

just

very, very tired all the time.

Thank's for your thought's.

Deb. (Aussie) xx

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

From: DeNicola

Rheumatoid Arthritis

Sent: Tuesday, March 18, 2003 1:16 AM

Subject: Deb

Hi Deb,

I saw that you have Crohn's disease. Have you tried Remicade? It was

originally approved for Crohn's but now is also approved for arthritis. I have

been on it for almost 3 years and it works really well for me. (it's the only

med I don't have side effects from).

Take care,

in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~\

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi

>

>I have been on Methotrexate for a few years now & have no side effects form

it.

>I was having tablet form at first but because I have Crohn's Disease as

well it was not working.

>After a few months I was put on injections & I have been good.

>I do not say that this is the one for you but I would make it the last

resort in medications.

>It can have some very bad side effects in the liver area. It can cause

Focal Nodule Hypoplasia.

> " I think that is how you spell it " . Basically it is tumours & enlargement

of the liver.

>I know this from a friend I met at the specialist's room's who has it from

the Methotrexate.

>She is only 27

>I am also on Prednisone & Placquenil but have been having to see an eye

specialist every

>6 months as Placquenil can cause Glaucoma. My right eye has the start of

Glaucoma & that

>only started 3 years after starting the tablets.

>

>Stay well all.

>Deb.

---------------------------------------------------------------------------

-

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[Guest guest]

, the link is http://www.arthritisinsight.com/cgi-bin/wsmbb/wsmbb.cgi?SB+KYWRJLLXVS/AKFCLKZQUN+config Most of the posters are from the US but we have perhaps six or so from Australia, about the same from Canada and England, one from South Africa, and one I know of from Croatia. The Aussies sometimes mention an Aussie chat room, but I don't know where that is. Hope this helps.

Grandpavan1927

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

From: agregg@...

Rheumatoid Arthritis

Sent: Monday, March 17, 2003 3:03 PM

Subject: Re: Deb

Harold,Coupld you please tell me the the name of that Other boardMany Thanks"Harold Van Tuyl" <hvantuyl@...> on 18/03/2003 07:00:41Please respond to Rheumatoid Arthritis To: Rheumatoid Arthritis cc: (bcc: Gregg/NSW/QBE/AU)Subject: Re: DebOn another board I follow there are Australians who post fairly often. One ofthem was in a clinical study for Remicade for Rheumatoid Arthritis. There maybe some for Crohn's disease also. You might ask your rheumatologist aboutclinical trials. Good luck and God bless.Grandpavan1927 ----- Original Message ----- From: Debbie Rheumatoid Arthritis Sent: Monday, March 17, 2003 7:43 AM Subject: Re: Deb Hi . I don't know what it is called over here but I have tried heaps over theyears. I am glad to hear that you have no side effects from it & is working for you. I dont know what I will be able to use soon as the doctors now think I have Leukaemia on top of every thing else. I find out about mid April. I have towait that long to see the Haematologist at the Oncology Unit. The waiting iskilling me. My white cell count has multiplied (28.5) in 4 months. I dont feel sick at alljust very, very tired all the time. Thank's for your thought's. Deb. (Aussie) xx ----- Original Message ----- From: DeNicola Rheumatoid Arthritis Sent: Tuesday, March 18, 2003 1:16 AM Subject: Deb Hi Deb, I saw that you have Crohn's disease. Have you tried Remicade? It wasoriginally approved for Crohn's but now is also approved for arthritis. I havebeen on it for almost 3 years and it works really well for me. (it's the onlymed I don't have side effects from). Take care, in VA~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~>Hi > >I have been on Methotrexate for a few years now & have no side effects formit. >I was having tablet form at first but because I have Crohn's Disease aswell it was not working. >After a few months I was put on injections & I have been good. >I do not say that this is the one for you but I would make it the lastresort in medications. >It can have some very bad side effects in the liver area. It can causeFocal Nodule Hypoplasia. >"I think that is how you spell it". Basically it is tumours & enlargementof the liver. >I know this from a friend I met at the specialist's room's who has it fromthe Methotrexate. >She is only 27 >I am also on Prednisone & Placquenil but have been having to see an eyespecialist every >6 months as Placquenil can cause Glaucoma. My right eye has the start ofGlaucoma & that >only started 3 years after starting the tablets. > >Stay well all. >Deb.---------------------------------------------------------------------------- Protect your PC - Click here for McAfee.com VirusScan Online

[Guest guest]

Dear Debbie, I'm so sorry to hear that you may have leukimia. I don't think I could wait to find out either! You're in my thoughts.

Take care,

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>I don't know what it is called over here but I have tried heaps over the years. >I am glad to hear that you have no side effects from it & is working for you. > >I dont know what I will be able to use soon as the doctors now think I have >Leukaemia on top of every thing else. I find out about mid April. I have to wait >that long to see the Haematologist at the Oncology Unit. The waiting is killing me. >My white cell count has multiplied (28.5) in 4 months. I dont feel sick at all just >very, very tired all the time. > >Thank's for your thought's. >Deb. (Aussie) xx > > ----- Original Message ----- > From: DeNicola > Rheumatoid Arthritis > Sent: Tuesday, March 18, 2003 1:16 AM > Subject: Deb > > > Hi Deb, > I saw that you have Crohn's disease. Have you tried Remicade? It was originally approved for Crohn's but now is also approved for arthritis. I have been on it for almost 3 years and it works really well for me. (it's the only med I don't have side effects from). > > > Take care, > > in VA > >~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > >Hi > > > >I have been on Methotrexate for a few years now & have no side effects form it. > >I was having tablet form at first but because I have Crohn's Disease as well it was not working. > >After a few months I was put on injections & I have been good. > >I do not say that this is the one for you but I would make it the last resort in medications. > >It can have some very bad side effects in the liver area. It can cause Focal Nodule Hypoplasia. > >"I think that is how you spell it". Basically it is tumours & enlargement of the liver. > >I know this from a friend I met at the specialist's room's who has it from the Methotrexate. > >She is only 27 > >I am also on Prednisone & Placquenil but have been having to see an eye specialist every > >6 months as Placquenil can cause Glaucoma. My right eye has the start of Glaucoma & that > >only started 3 years after starting the tablets. > > > >Stay well all. > >Deb. > > >------------------------------------------------------------------------------ > Protect your PC - Click here for McAfee.com VirusScan Online >

[Guest guest]

Hi. I've been a member for ages and enjoy reading the posts from everyone. As I'm an Aussie, I'm interested in finding out more about this other board. I was interested in being a part of these tests, but because I live a little over 2 hours away from my Rheumy, they talked me out of it because it would have meant travelling there 2 times a week or something like that. Here is my story:

I have had RA since 1990. I used to help a friend with his flower business and on one occasion I weeded the flower beds the day after they were sprayed. No gloves, I just sat in the dirt pulling up weeds with my bare hands!! Not a smart move, so I found out. My RA was triggered within a matter of days from a big dose of pesticides. Anyway, after 12 months of this disease ravaging my body, I went to see a Dr, who referred me to the Rheumatologist and yadda, yadda, yadda. We all know how the story goes. Because I was so bad; could hardly walk, sit, stand, hold things etc, etc, he immediately put me on prednisone, and boy two or three days later, you would never have thought I was the same person. I was amazed at how much I put up with before I sought help! I was also put on Naprosyn (250mg), and Salazopyrin (500 mg daily) which helped immensely to the point that a few years down the track, I didn't think I needed to be on it and stopped taking it. STUPID MOVE! I quickly came to realise that arthritis isn't something that just goes away like a cold. The pain came back, the Salazopyrin became less effective and so I then had Methotrexate (2.5mg twice a day) and Folic Acid (500mg once a day) added in about 1993. Oh yes, I was weaned off the Prednisone over however long it was. Can't remember, too long ago.

In the last six months, I have stopped taking Naprosyn due to stomach problems and that was replaced with Zoton (30mg), - not that I've taken any - and because I was still having pain in my hands, my Mtx dosage has been upped to 4 tablets a day - which my Rheumy suggests I take 2 on Monday and 2 on Thursday as one of my blood tests came back a little abnormal due to too big a dose all at once - but I have since read that this

medication should not be split like that. I guess the Dr knows better, so I'll trust him on that one. I was told from the start that Methotrexate had irreversible damaging side effects, I am now becoming a little more anxious at upping my dose seeing I have been on it so long. Joint damage has still occurred, although nowhere near as badly as it could have.

Well, that's my story. Thanks for all the information you share, and if you could let me know about that other group, I would appreciate it.

Regards

Deb

-----Original Message-----From: Harold Van Tuyl [mailto:hvantuyl@...] Sent: Tuesday, 18 March 2003 6:01 AMRheumatoid Arthritis Subject: Re: Deb

On another board I follow there are Australians who post fairly often. One of them was in a clinical study for Remicade for Rheumatoid Arthritis. There may be some for Crohn's disease also. You might ask your rheumatologist about clinical trials. Good luck and God bless.

Grandpavan1927

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

From: Debbie

Rheumatoid Arthritis

Sent: Monday, March 17, 2003 7:43 AM

Subject: Re: Deb

Hi .

I don't know what it is called over here but I have tried heaps over the years.

I am glad to hear that you have no side effects from it & is working for you.

I dont know what I will be able to use soon as the doctors now think I have

Leukaemia on top of every thing else. I find out about mid April. I have to wait

that long to see the Haematologist at the Oncology Unit. The waiting is killing me.

My white cell count has multiplied (28.5) in 4 months. I dont feel sick at all just

very, very tired all the time.

Thank's for your thought's.

Deb. (Aussie) xx

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

From: DeNicola

Rheumatoid Arthritis

Sent: Tuesday, March 18, 2003 1:16 AM

Subject: Deb

Hi Deb, I saw that you have Crohn's disease. Have you tried Remicade? It was originally approved for Crohn's but now is also approved for arthritis. I have been on it for almost 3 years and it works really well for me. (it's the only med I don't have side effects from).

Take care,

in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi > >I have been on Methotrexate for a few years now & have no side effects form it. >I was having tablet form at first but because I have Crohn's Disease as well it was not working. >After a few months I was put on injections & I have been good. >I do not say that this is the one for you but I would make it the last resort in medications. >It can have some very bad side effects in the liver area. It can cause Focal Nodule Hypoplasia. >"I think that is how you spell it". Basically it is tumours & enlargement of the liver. >I know this from a friend I met at the specialist's room's who has it from the Methotrexate. >She is only 27 >I am also on Prednisone & Placquenil but have been having to see an eye specialist every >6 months as Placquenil can cause Glaucoma. My right eye has the start of Glaucoma & that >only started 3 years after starting the tablets. > >Stay well all. >Deb.

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[Guest guest]

Hi Deb.

I would be interested in this other board as well but can't seem to find out to much about it.

If you get any information could you e-mail me direct at debbie_j @ tpg.com. au .

I spaced it so it would show up.

I am living in Queensland but originally from Gosford in NSW.

If you would just like to talk feel free to e-mail me.

I have Enthropathic Rheumatoid Arthritis. Not a common one but that is the story of my life.

I have Crohns Disease, Glaucoma & heart problems as well.

Hope to hear from you soon.

Debbie. J.

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

From: Debbie

Rheumatoid Arthritis

Sent: Wednesday, April 23, 2003 8:24 AM

Subject: RE: Deb

Hi. I've been a member for ages and enjoy reading the posts from everyone. As I'm an Aussie, I'm interested in finding out more about this other board. I was interested in being a part of these tests, but because I live a little over 2 hours away from my Rheumy, they talked me out of it because it would have meant travelling there 2 times a week or something like that. Here is my story:

I have had RA since 1990. I used to help a friend with his flower business and on one occasion I weeded the flower beds the day after they were sprayed. No gloves, I just sat in the dirt pulling up weeds with my bare hands!! Not a smart move, so I found out. My RA was triggered within a matter of days from a big dose of pesticides. Anyway, after 12 months of this disease ravaging my body, I went to see a Dr, who referred me to the Rheumatologist and yadda, yadda, yadda. We all know how the story goes. Because I was so bad; could hardly walk, sit, stand, hold things etc, etc, he immediately put me on prednisone, and boy two or three days later, you would never have thought I was the same person. I was amazed at how much I put up with before I sought help! I was also put on Naprosyn (250mg), and Salazopyrin (500 mg daily) which helped immensely to the point that a few years down the track, I didn't think I needed to be on it and stopped taking it. STUPID MOVE! I quickly came to realise that arthritis isn't something that just goes away like a cold. The pain came back, the Salazopyrin became less effective and so I then had Methotrexate (2.5mg twice a day) and Folic Acid (500mg once a day) added in about 1993. Oh yes, I was weaned off the Prednisone over however long it was. Can't remember, too long ago.

In the last six months, I have stopped taking Naprosyn due to stomach problems and that was replaced with Zoton (30mg), - not that I've taken any - and because I was still having pain in my hands, my Mtx dosage has been upped to 4 tablets a day - which my Rheumy suggests I take 2 on Monday and 2 on Thursday as one of my blood tests came back a little abnormal due to too big a dose all at once - but I have since read that this

medication should not be split like that. I guess the Dr knows better, so I'll trust him on that one. I was told from the start that Methotrexate had irreversible damaging side effects, I am now becoming a little more anxious at upping my dose seeing I have been on it so long. Joint damage has still occurred, although nowhere near as badly as it could have.

Well, that's my story. Thanks for all the information you share, and if you could let me know about that other group, I would appreciate it.

Regards

Deb

-----Original Message-----From: Harold Van Tuyl [mailto:hvantuyl@...] Sent: Tuesday, 18 March 2003 6:01 AMRheumatoid Arthritis Subject: Re: Deb

On another board I follow there are Australians who post fairly often. One of them was in a clinical study for Remicade for Rheumatoid Arthritis. There may be some for Crohn's disease also. You might ask your rheumatologist about clinical trials. Good luck and God bless.

Grandpavan1927

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

From: Debbie

Rheumatoid Arthritis

Sent: Monday, March 17, 2003 7:43 AM

Subject: Re: Deb

Hi .

I don't know what it is called over here but I have tried heaps over the years.

I am glad to hear that you have no side effects from it & is working for you.

I dont know what I will be able to use soon as the doctors now think I have

Leukaemia on top of every thing else. I find out about mid April. I have to wait

that long to see the Haematologist at the Oncology Unit. The waiting is killing me.

My white cell count has multiplied (28.5) in 4 months. I dont feel sick at all just

very, very tired all the time.

Thank's for your thought's.

Deb. (Aussie) xx

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

From: DeNicola

Rheumatoid Arthritis

Sent: Tuesday, March 18, 2003 1:16 AM

Subject: Deb

Hi Deb, I saw that you have Crohn's disease. Have you tried Remicade? It was originally approved for Crohn's but now is also approved for arthritis. I have been on it for almost 3 years and it works really well for me. (it's the only med I don't have side effects from).

Take care,

in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

>Hi > >I have been on Methotrexate for a few years now & have no side effects form it. >I was having tablet form at first but because I have Crohn's Disease as well it was not working. >After a few months I was put on injections & I have been good. >I do not say that this is the one for you but I would make it the last resort in medications. >It can have some very bad side effects in the liver area. It can cause Focal Nodule Hypoplasia. >"I think that is how you spell it". Basically it is tumours & enlargement of the liver. >I know this from a friend I met at the specialist's room's who has it from the Methotrexate. >She is only 27 >I am also on Prednisone & Placquenil but have been having to see an eye specialist every >6 months as Placquenil can cause Glaucoma. My right eye has the start of Glaucoma & that >only started 3 years after starting the tablets. > >Stay well all. >Deb.

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