Re: Question for anyone

[Guest guest]

I could never stop the nose bleeds my daughter had on any Nsaids, She also

had unriary tract bleeding. We switched to plaquinal. My daughter can not

take Nsaids. My daughter was pauci and Ana POsitive Good Luck SHU

[Guest guest]

Hi :

I don't know how experienced your doctor is, but most of the thinking these

days on kids with jra is to treat it aggressively, and quickly with the best

drugs available. I think Georgina posted a study not too long ago about

early use of methotrexate (a DMARD), that early use of it following initial

diagnosis resulted in better long term outcomes, less long term joint

damage, etc. I think too that if you are having such a hard time

communicating with your daughter's doctor, he might not be the best doctor

for you. Really good communication is so important in managing this disease

in our children. I know some areas do not have a lot of choices, and that in

the States you have HMO's to deal with, but if you have any options, I'd try

to find someone else.

NSAID's can cause a lot of stomach problems and that does need to be closely

monitored. I've never heard of Saflaid, sorry. I read somewhere recently

though, that as health care " consumers " we need to ask questions. A lot of

questions, question everything and if your doc does not like this, then its

time to switch. Only by being well informed can we help our kids get the

care they need.

Lynn

From: mbvanert@...

Reply-

Date: Thu, 16 Aug 2001 04:52:38 -0000

Subject: Question for anyone

Hi everyone!

Today marks the 2 wk point since Halie was dx'd and started

ibuprofen. Due to bloody noses and stomach pain (w/ diarrhea:( ),

her Rheumy has suggested changing to Saflaid. I have not heard of

this medication before and, unfortunately, he is quite difficult to

get a hold of (most of our talks take place on my answering machine

or with his nurse). Has anyone had experience with this drug? I have

read a lot of info. regarding the use of DMARDs and wonder if it is a

better way to go. Halie has had only minimal relief with the

ibuprofen (it's only been 2 wks, tho) and I'm wondering if I should

pursue the idea of using something a bit stronger? Is using

ibuprofen and similar drugs the first step in treatment? I'm feeling

concerned mostly because she has had this for ~3yrs already and I

don't think we should waste any more time. Am I just overreacting?

Any thoughts or ideas?

Thanks all.....God Bless.....

- mom to Halie, 6, Poly

[Guest guest]

Hi Lynn -

I, too, read the info about using DMARDs aggressively and I suppose

that is probably what has gotten my wheels turnin'. I was wrong

about the medication name (can blame that one on the husband!) it is

actually Salsalate, and I understand that to be part of the Aspirin

family. We go to see the Rheumy next Friday and I am preparing to

talk to him about the use of DMARDs as opposed to the NSAIDs as I

truly believe her joints to be more than moderately affected. She

walks with an out turned foot due to her hip (I think) and I'm not

sure if I should possibly discuss the idea of splinting? Have you

had any experience with that? The PT wants us to work on correcting

that as much as possible, but I feel as though I'm telling her 50

times a day to watch her " duck-feet " and with school starting I don't

see how she will maintain correcting herself.

The way I'm seeing it, our Rheumy has one more chance to redeem

himself before I seek out a new one. Even after he told us to

discontinue the Advil and start a new RX, he gave no indication or

information on the new meds (again, another message on the answ.

machine!). Unfortunately, we, maybe just because this is still so

new, have many questions and concerns about this disease and need a

Dr. who is a little more available. Thanks for the advice - you

confirmed what I was already starting to question but too afraid of

overreacting to consider.

Take Care, God Bless,

- mom to Halie, 6, Poly

> Hi :

> I don't know how experienced your doctor is, but most of the

thinking these

> days on kids with jra is to treat it aggressively, and quickly with

the best

> drugs available. I think Georgina posted a study not too long ago

about

> early use of methotrexate (a DMARD), that early use of it following

initial

> diagnosis resulted in better long term outcomes, less long term

joint

> damage, etc. I think too that if you are having such a hard time

> communicating with your daughter's doctor, he might not be the best

doctor

> for you. Really good communication is so important in managing this

disease

> in our children. I know some areas do not have a lot of choices,

and that in

> the States you have HMO's to deal with, but if you have any

options, I'd try

> to find someone else.

> NSAID's can cause a lot of stomach problems and that does need to

be closely

> monitored. I've never heard of Saflaid, sorry. I read somewhere

recently

> though, that as health care " consumers " we need to ask questions. A

lot of

> questions, question everything and if your doc does not like this,

then its

> time to switch. Only by being well informed can we help our kids

get the

> care they need.

>

> Lynn

>

> From: mbvanert@y...

> Reply- @y...

> Date: Thu, 16 Aug 2001 04:52:38 -0000

> @y...

> Subject: Question for anyone

>

>

> Hi everyone!

>

> Today marks the 2 wk point since Halie was dx'd and started

> ibuprofen. Due to bloody noses and stomach pain (w/ diarrhea:( ),

> her Rheumy has suggested changing to Saflaid. I have not heard of

> this medication before and, unfortunately, he is quite difficult to

> get a hold of (most of our talks take place on my answering machine

> or with his nurse). Has anyone had experience with this drug? I

have

> read a lot of info. regarding the use of DMARDs and wonder if it is

a

> better way to go. Halie has had only minimal relief with the

> ibuprofen (it's only been 2 wks, tho) and I'm wondering if I should

> pursue the idea of using something a bit stronger? Is using

> ibuprofen and similar drugs the first step in treatment? I'm

feeling

> concerned mostly because she has had this for ~3yrs already and I

> don't think we should waste any more time. Am I just overreacting?

> Any thoughts or ideas?

> Thanks all.....God Bless.....

> - mom to Halie, 6, Poly

>

>

>

[Guest guest]

SharonThe one who knows absolutely the best about our children having the Hep - is Cheryl!! It doesn't sound to me like her 19 yr old daughter is having a horrible time coping with something that was certainly not her fault. It sure doesn't sound as though she blames her mother just so she can refuse to grow up, live today with what has been handed to you and get on with it.You know, my son had a pretty bad case of Mono a few years back. At the time that it happened, he was going to college and taking some difficult courses, plus worked. He had to drop one of the courses because of the affects from the Mono. Were you aware that those affects last for a year?? It was like he had

to take a year off for his health. Now, this long later - it never even comes up for discussion. That was then and now is now.If, like Cheryl's daughter, your son were to do tx - it would only be likely, one year of his life and that - so that he can have a long healthy life. Can any of us actually remember what we did with that year that we were 19??Also, where is your younger son in all of this?? What is his older brother showing him??

Hi all,Just came back from a sabatical. I hope everyone is okay. Haven't been on line in a long time. My son has since left and he is living with my sister trying to cope with his hep. I hope he can over come. There are so many people who are overcoming this I just wish he would hop on board and see that it will be okay. It's hard to be a teen and be told about hep. Your just starting your life and then bang. I am not guilty no one asks for this, I certainly didn't. I am not guilty anymore. I am sorry I wasn't educated about it.thanks,sharon

[Guest guest]

DonnaI found one of the hardest things to cope with, was those days of unexplainable sheer exhaustion. That was before I was diagnosed!! Everything in me screamed that I was just being lazy!!Then, I was about to start my 1st tx! How very very fortunate I was to have the strong support of our local Hep C nurses. Right from the start, they told me about all the possible side affects. Also, they suggested that I don't plan ANYTHING on a weekend, except to just stay in my jammies. Yup, I listened to that, especially since it was usually impossible for me to get up or stay up. I did the very same thing during my 2nd tx.Now, my very very strong advice to you is, talk to

your Dr. ASAP about going on anti-depressants!! Honestly, Donna. On my 1st round of tx, I never really found a reason to go on them; but, my 2nd round!!!! All together different. I was already taking a small dose of anti-d's when I began; but, the weekend that I was laying in bed wondering if this was worth it and who would miss me?? I knew what I had to do immediately.Please remember, Donna - you are injecting yourself with chemo therapy!!! How would you expect any friends, family or workmates to feel if they were on chemo? I'll bet you wouldn't find fault with them because all their usual chores weren't kept up with, would you?? So, give yourself some room. Also, if you allow yourself the weekends then you may be able to keep up with your job, providing it's not a lot of manual labour. I am a Bookkeeper for small businesses and work from my home. With help, I managed to keep

my business intact through both tx's. The boss wouldn't give me any time off. LOLGloria

Teri,

I honestly have not been bad until now. I must admit I thought it wasn't going to get to me but now that it has I am mad, upset, frustrated, depressed and on and on. You are helping me understand that its okay to be sick and I need to accept it. That is the hard part. I love to go to work but I am useless in this condition. I also feel guilty playing sick on the weekends. I need to do errands, and house work and so on but I have cut way back because it can wait.

Yesterday was the first day off I've had since treatment with exception to 2 snow days last week. That was what saved me because I needed the down time bad.

I am seeing the doctor next month with all the results of my week 4 blood work so I will do my best to hang in and take one day at a time. That's all I can do at this point. Thanks for giving me much needed support. I try not to bother you unless I am in need. So, thanks to you and all of the group.

Hugs,

Donna

Re: [ ] question for anyone

Donna,

What kind of symptoms are you having? Shots can vary from week to week. My doctor told me I would definitely be off work for 2 to 10 weeks from the beginning until my body got used to the shots. My side effects were pretty consistent though. I had them all, all the time! It's more than likely normal but what are you feeling?

Hugs,Teri

On Thu, Feb 10, 2011 at 1:15 PM, <dmgarr@...> wrote:

Hi guys,

I have a question for you. I am getting ready for shot number 6 tomorrow but the last one really did a number on me. I had to call in sick yesterday and got sent home early today because i am still feeling so sick.

Is this normal or should I be getting in touch with the doctor. I think its just part of the tx but my concerned boss thinks I should call the doctor. Just wonder what you think.

Thanks,

Donna