Re: HELP! How can I convince a 21 yr old woman to take Remicade or Embril?

[Guest guest]

Hi Rowan.

You sound like a wonderful mother. You are doing a great job so do not think other wise.

I have a good friend who for 33 years we have been in regular contact. We visit as often as we can and she has been on the Methadone program now for the last 24 years. She has her down days just as much a her good days but she battles on. I have heard her say she wanted to die that many times I have lost count but she has made it through to 48 and still going.

She suffers bad with R/A along with her addiction and depression but is no less a person. She is my friend.

Has Amber still been in contact with her good friends? Has she anyone else besides you to fall back on too, to talk her head off. If she has then try to get them to come around and have a good bitch session about anything and everything. It works for my friend Gail when she is down. We work around to the subject of medications and in my case we have a lot of them to talk about. It might be only 2 or 3 people but it works. We have got her to go on other medications for her R/A and she took some convincing as well. Around about 2 years worth.

The support of the family is great but when it is combined with her friends as well she will have a tendency to feel more relaxed and open to new ideas. It is something that will not happen over night. Patience is a must.

As for myself, I am 44 and have R/A (very rare form), Crohn's Disease, Glaucoma and Eschemic Heart Disease. I have a lot of trouble every day just getting around but that's life. I have the support of a couple of really great friends who understand when I am rude to them that it is the pain causing me to be like that. I can explode at the drop of a hat over nothing and my own family has been to hell and back but still support and love me. I would not walk away from that for any reason on earth.

I have suffered in one way or another since I was 8 but nothing was diagnosed for me until later in life. As soon as I knew what I was up against I thought I would do just about any thing to stop from hurting and feeling the way I do.

I started a lot of medication and read about side effects on them all and I have to admit I was not impressed and did not want to take them. After speaking to a lot of people over a short period of time and still suffering I thought "what the hek". I was frightened for the first few weeks but then realised that there were no major side effects only little things like "gastric or thrush or dry mouth". They would only last a short while. Some of those meds I am still on today but I have tried that many new one's since then I could not count them all.

I have been a test patient for some new med's and not had side effects and only a couple of weeks ago I started a new one for my R/A, Arava. It sounds worst than it is.

I have none of the side effects listed at all and some of the people in the group are on it and have not had any problems with it. I can tell you I was very frightened about starting this as the list for side effects was not good.

Me having Crohn's Disease is the problem. I came very close to dying a few years back because of it and since then I was put on Methotrexate Injections for the Crohn's and the R/A. It worked very, very well and that was just a try and see if it work's. When they asked me to go off it to try the Arava I just thought I was losing my "safety net". I knew the methotrexate was working so why take me off it.

The methotrexate can do a lot of damage over a long period of time and I was coming up to that time. I was on high doses and could not come down to a lesser dose as it would not keep the R/A or Crohn's in remission. When the Crohn's flares it is like being in constant severe contractions for child birth. That is when I get depressed the most. Both of them out of remission at once is hell.

I have excellent specialists looking after me so I know I am in safe hands and as I have said to numerous ladies that if you have a good GP (local doctor) who listens to you and will send you to the right people then you never look back.

I hope I have given you a bit of insight to my handling of medications.

I wish you and your daughter great success and hope that you can read this to her to let her know that with her fears we all have them but some handle it better then others.

She can e-mail me direct if she likes and I will put it on here so you can read it. If I write it normally then it will not print it all out. The group blocks half of it for some reason. I will space it apart and you just type it normally.

dcampbell @ tac. com. au

Hope to hear from you or your daughter soon.

Good Luck.

Debbie.

(Australia)

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

From: Rheumatoid Arthritis

Date: Monday, 04 March 2002 11:41:40 PM

Rheumatoid Arthritis

Subject: HELP! How can I convince a 21 yr old woman to take Remicade or Embril?

Hello All,I have joined this group to find some insight and support.My 21 year old stepdaughter was diagnosed with RA last year. Her name is Amber. She also has asthma and additionally began using heroin before she was diagnosed, but is continuing to use for pain control. She is trying to conform to a methadone program, but everyday is a battle. The pain and depression overwhelm her, and she talks about taking her own life. She has the opportunity to begin Remicade therapy, but she is focusing on the listed side effects. She is afraid she will not be able to have children after taking the Remicade. The anger, depression, and pain take its toll on her and everyone around her. From where is stand, the benefits outweigh the risks, BUT I WANT TO KNOW WHAT YOU THINK!I can empathize, but I can never truly understand what she is going through. I have fibromyalgia so I know about pain everyday. I only know that if there was a medication out there that could take it away, I would do it. I can't get her to go to any support groups in the area. She is very skeptical of the internet because of some of the strange things that happen in chat rooms. If I could read her some messages from people that understand, maybe it would be a good source of information and hope for the future.I guess what I am hoping is that someone could picture in their mind what they would say to their own daughter. Could anything you know or have gone through help her? Your thoughts and kind words are greatly appreciated.Here's hoping!Rowan

[Guest guest]

Hello, Rowan:

My heart goes out to you and to Amber. It doesn't take a rocket scientist

to know what a tremendously hard job it is for anyone to kick heroin and

maintain control. As I understand what you E-Mailed, Amber is giving

methadone a try, but " the pain and depression overwhelm her, and she talks

of taking her own life. "

At this point, if Amber were my daughter, red flags would be going up all

over the place and alarms so loud I wouldn't hear anything else.

Amber is undoubtedly dealing with not only detox, but any issues leading up

to heroin use. Has she considered comprehensive in-house detox/rehab, where

she would have the benefit of 24 hr. counseling; she could safely detox with

relatively little discomfort, and, at that time get things started with a RA

specialist who can discuss the pros and cons of Remicade or other drugs that

could control her disease. With a clear head, Amber will know that heroin

is not an option for pain control of her arthritis.

Rowan, you would be doing yourself a great service to hook up with Nar-Anon

at 818-773-9999, and take care of your own needs during this crisis in the

family. You will ultimately be of even more help to Amber.

Best wishes; good luck! Please keep me posted.

Betty

>From: " rowan268 " <rowan268@...>

>Reply-Rheumatoid Arthritis

>Rheumatoid Arthritis

>Subject: HELP! How can I convince a 21 yr old woman

>to take Remicade or Embril?

>Date: Sun, 03 Mar 2002 17:43:51 -0000

>

>Hello All,

>

>I have joined this group to find some insight and support.

>

>My 21 year old stepdaughter was diagnosed with RA last year. Her

>name is Amber. She also has asthma and additionally began using

>heroin before she was diagnosed, but is continuing to use for pain

>control. She is trying to conform to a methadone program, but

>everyday is a battle. The pain and depression overwhelm her, and she

>talks about taking her own life. She has the opportunity to begin

>Remicade therapy, but she is focusing on the listed side effects.

>She is afraid she will not be able to have children after taking the

>Remicade. The anger, depression, and pain take its toll on her and

>everyone around her. From where is stand, the benefits outweigh the

>risks, BUT I WANT TO KNOW WHAT YOU THINK!

>

>I can empathize, but I can never truly understand what she is going

>through. I have fibromyalgia so I know about pain everyday. I only

>know that if there was a medication out there that could take it

>away, I would do it.

>

>I can't get her to go to any support groups in the area. She is very

>skeptical of the internet because of some of the strange things that

>happen in chat rooms. If I could read her some messages from people

>that understand, maybe it would be a good source of information and

>hope for the future.

>

>I guess what I am hoping is that someone could picture in their mind

>what they would say to their own daughter. Could anything you know

>or have gone through help her? Your thoughts and kind words are

>greatly appreciated.

>

>Here's hoping!

>

>Rowan

>

>

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