Ginny/home infusions

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In a message dated 12/4/2004 3:48:41 PM Eastern Standard Time, RSD-CRPSofAmerica writes:

The good news about remicade now is that they just came out with a new way of giving it...They still give some patients the infusions...but I will have the choice of getting infusions or giving myslef the shot 3x a week...I am definetly going to give it to myself at home if possible...depending on which my insurance will cover. Sothings seem to be moving in the right direction now...finally..lol. Hope everyone is having a great weekend...Hugs..Ginny

Hi Ginny,

I am so glad that things are looking up for you. I know you went through some difficulties with he doctors and everything. With the home infusions will they put in a central line? I was on home infusions for a very very long time. It was great because at least I did not have to be in the hospital. They implanted a port in my chest and I did all of the infusions myself. I was married at the time and my ex husband helped too. He knew more about IV therapy then most nurses LOL!!!! I am so happy that you are finally getting some relief from the ever present pain. I don't know much about Sjogrens (sp?) What are the symptoms? How long have you had it? You take care, Love Jai

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jaismonkey@... wrote:

Jai,

If they do the infusions it will be every 6-8 weeks for 35 mins in either the drs office (which is about 45 mins away) or a hospital (which could be about 10 mins away). If i do the injections it would be 3x a week at home..I did the methatrexate injections at home so I am pretty familiar on how to inject myself..if they do it the same way. So I won't need a central line thankfully. I hear the side effects are not as bad when given 3x a week compared to the 35 min infusion which is another reason I would like to give it to myself..the other major reason is if I do get sick from it I would rather be at home and not 45 mins away from home trying to drive home while feeling sick. Sjogren's syndrome is an auto-immune disorder that affects the tear ducts and saliva ducts...it causes dry eyes and dry mouth to the extreme. I use biotene mouthwash, toothpaste and mouth gel to help moisten my mouth...I am always thirsty and so I chew gum constantly or

suck on hard candies to help some. I use fake tears a few times a day to moisten my eyes and have to be careful when I get things in my eyes because I do not make enough tears to rinse it out naturally. It can cause cavities because the saliva doesn't balance off the mouth's own bacteria..thankfully I have still have no cavities...but I am constantly brushing my teeth and flossing to prevent this. I have had a few eye infections caused by make-up that has gotten in my eye and realy irritated the eye ..I don't notice alot of times if something small has gotten in my eye because my eyes always feel like they have something in them irritating them...so I got good at ignoring that feeling...but the fake tears usually rinses out unwanted make-up or small things so I usually don't get infections much anymore. My tears are stringy and solid and is usually the most bothersome thing that gets in my eyes. I

was dx with sjogrens when I was in my early 20's. Usually people get dx with it much later then this though. Biotene products just came out about 4-5 yrs ago and I started using them 2 yrs ago and that has helped alot...before then there was nothing that helped with the dry mouth...the fake tears have been out for years...so I have always had that to help with the dry eyes which is nice. Hopefully better products will be coming out in the future. How are you doing? I hope the pleurisy is all gone so you can start planning for the upcoming holidays and enjoy them...Hugs..Ginny

Hi Ginny,

I am so glad that things are looking up for you. I know you went through some difficulties with he doctors and everything. With the home infusions will they put in a central line? I was on home infusions for a very very long time. It was great because at least I did not have to be in the hospital. They implanted a port in my chest and I did all of the infusions myself. I was married at the time and my ex husband helped too. He knew more about IV therapy then most nurses LOL!!!! I am so happy that you are finally getting some relief from the ever present pain. I don't know much about Sjogrens (sp?) What are the symptoms? How long have you had it? You take care, Love Jai

[Guest guest]

Thanks Joann...Hope you are doing better...Hugs..GinnyJoAnn & Russ Ford wrote:

Ginny just wanted to let you know how sorry I am for all the many physical problems you are dealing with. I really must admire you greatly to keep a positive attitude and be able to Mother both kids so well. I do not know of course, just how I would do but would think it would not be as good as you do. Keeping you in my prayers that your body's pains ease up and let you enjoy each day with little pain.

Take care my friend

Hugs

JoAnn

s Momma

Re: Ginny/home infusions

jaismonkey@... wrote:

Jai,

If they do the infusions it will be every 6-8 weeks for 35 mins in either the drs office (which is about 45 mins away) or a hospital (which could be about 10 mins away). If i do the injections it would be 3x a week at home..I did the methatrexate injections at home so I am pretty familiar on how to inject myself..if they do it the same way. So I won't need a central line thankfully. I hear the side effects are not as bad when given 3x a week compared to the 35 min infusion which is another reason I would like to give it to myself..the other major reason is if I do get sick from it I would rather be at home and not 45 mins away from home trying to drive home while feeling sick. Sjogren's syndrome is an auto-immune disorder that affects the tear ducts and saliva ducts...it causes dry eyes and dry mouth to the extreme. I use biotene mouthwash, toothpaste and mouth gel to help moisten my mouth...I am always thirsty and so I chew gum constantly or

suck on hard candies to help some. I use fake tears a few times a day to moisten my eyes and have to be careful when I get things in my eyes because I do not make enough tears to rinse it out naturally. It can cause cavities because the saliva doesn't balance off the mouth's own bacteria..thankfully I have still have no cavities...but I am constantly brushing my teeth and flossing to prevent this. I have had a few eye infections caused by make-up that has gotten in my eye and realy irritated the eye ..I don't notice alot of times if something small has gotten in my eye because my eyes always feel like they have something in them irritating them...so I got good at ignoring that feeling...but the fake tears usually rinses out unwanted make-up or small things so I usually don't get infections much anymore. My tears are stringy and solid and is usually the most bothersome thing that gets in my eyes. I

was dx with sjogrens when I was in my early 20's. Usually people get dx with it much later then this though. Biotene products just came out about 4-5 yrs ago and I started using them 2 yrs ago and that has helped alot...before then there was nothing that helped with the dry mouth...the fake tears have been out for years...so I have always had that to help with the dry eyes which is nice. Hopefully better products will be coming out in the future. How are you doing? I hope the pleurisy is all gone so you can start planning for the upcoming holidays and enjoy them...Hugs..Ginny

Hi Ginny,

I am so glad that things are looking up for you. I know you went through some difficulties with he doctors and everything. With the home infusions will they put in a central line? I was on home infusions for a very very long time. It was great because at least I did not have to be in the hospital. They implanted a port in my chest and I did all of the infusions myself. I was married at the time and my ex husband helped too. He knew more about IV therapy then most nurses LOL!!!! I am so happy that you are finally getting some relief from the ever present pain. I don't know much about Sjogrens (sp?) What are the symptoms? How long have you had it? You take care, Love Jai