Re: how long does it take for kineret to finally work?

[Guest guest]

Oh, honey...you have every right to be upset. Yes, there's a lot of truth in

your feeling, and you are not alone. When I first started taking Kineret, I

was told it could take up to 6 weeks to start helping. I was in horrible

shape and thought i'd never last if I had to wait 6 weeks. Fortunately for

me, it started to help in about 2 1/2 weeks, but it did take longer to feel

the full effects. I have heard from others that it didn't really do a lot

for, though. There are other medications that can be tried if Kineret

doesn't work. It's just the one that usually works best, so that's the one

we usuallh start with when we have to go on a biologic medication. And yes,

people taking biologics are atgreater risk for cancers, including rare

cancers, but that doesn't mean that we usually get them. The disease is hard

on our bodies, and the meds we take to control the disease are hard on our

bodies. I am sorry you are going through everything right now. As far as

your stabbing sharp pain and your difficulty breathing, call your doctor.

Could be inflammation of the lungs, could be pericarditis. Either way, you

may need some more antivinflammatories andor sterroids or a dosage change.

Good luck,

April

Sent from my Verizon Wireless Phone

[Guest guest]

My name is , I just found out that I had Still's Nov of 2011. I have been

sick for about five years and the doctors could find out what was wrong. Im

trying to find a good doc around here, western kentucky, and just cant. I'm

frustrated too, the doc around here dont know what kind of meds i need. I have

had three docs say to " still's is a bad disease, you dont want that " and then

they give me meds for something else that doesnt work. I know its bad, I'm the

one living with it. Im just soooo tired of trying, it seems like things will

never get better. I cant stand being tired ALL the time, is there anything to

take?  My husband doesnt seem to understand how i can be hurting and tired all

the time, he likes to go do stuff when hes off work, he doesnt like to just sit.

Its been really hard on our marriage. My son is 15, I feel like i'm failing him

too. I try to do things with him but he knows i never feel good and he worries

about me. A kid shouldnt

have to worry about the parents.  I dont have a lot of swelling, i do have a

rash that looks nasty. If anybody know what would help with the tiredness i

would love to know. I hope you all have a good day and can enjoy it.

Thanks,

________________________________

To: Stillsdisease

Sent: Thursday, March 22, 2012 9:50 PM

Subject: how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

My name is , I just found out that I had Still's Nov of 2011. I have been

sick for about five years and the doctors could find out what was wrong. Im

trying to find a good doc around here, western kentucky, and just cant. I'm

frustrated too, the doc around here dont know what kind of meds i need. I have

had three docs say to " still's is a bad disease, you dont want that " and then

they give me meds for something else that doesnt work. I know its bad, I'm the

one living with it. Im just soooo tired of trying, it seems like things will

never get better. I cant stand being tired ALL the time, is there anything to

take?  My husband doesnt seem to understand how i can be hurting and tired all

the time, he likes to go do stuff when hes off work, he doesnt like to just sit.

Its been really hard on our marriage. My son is 15, I feel like i'm failing him

too. I try to do things with him but he knows i never feel good and he worries

about me. A kid shouldnt

have to worry about the parents.  I dont have a lot of swelling, i do have a

rash that looks nasty. If anybody know what would help with the tiredness i

would love to know. I hope you all have a good day and can enjoy it.

Thanks,

________________________________

To: Stillsdisease

Sent: Thursday, March 22, 2012 9:50 PM

Subject: how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

My name is , I just found out that I had Still's Nov of 2011. I have been

sick for about five years and the doctors could find out what was wrong. Im

trying to find a good doc around here, western kentucky, and just cant. I'm

frustrated too, the doc around here dont know what kind of meds i need. I have

had three docs say to " still's is a bad disease, you dont want that " and then

they give me meds for something else that doesnt work. I know its bad, I'm the

one living with it. Im just soooo tired of trying, it seems like things will

never get better. I cant stand being tired ALL the time, is there anything to

take?  My husband doesnt seem to understand how i can be hurting and tired all

the time, he likes to go do stuff when hes off work, he doesnt like to just sit.

Its been really hard on our marriage. My son is 15, I feel like i'm failing him

too. I try to do things with him but he knows i never feel good and he worries

about me. A kid shouldnt

have to worry about the parents.  I dont have a lot of swelling, i do have a

rash that looks nasty. If anybody know what would help with the tiredness i

would love to know. I hope you all have a good day and can enjoy it.

Thanks,

________________________________

To: Stillsdisease

Sent: Thursday, March 22, 2012 9:50 PM

Subject: how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

My RD has had me taking magnesium and potassium to help with the exhaustion.

Now, I am also on Kineret, which has been a miracal and literally a lifesaver

for me. I don't know how much good the magnesium and potassium would do without

the Kineret. I also take methotrexate, but that can ADD to the exhaustion, as

well as other things. When I started taking methotrexate, I also began folic

acid. The pharmacist said he's never heard of anyone taking methotrexate and NOT

taking folic acid. It counteracts the methotrexate. I take the shots, not the

pills. They work better and have less side effects. Check with dad for a list of

docs in your area.

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

My RD has had me taking magnesium and potassium to help with the exhaustion.

Now, I am also on Kineret, which has been a miracal and literally a lifesaver

for me. I don't know how much good the magnesium and potassium would do without

the Kineret. I also take methotrexate, but that can ADD to the exhaustion, as

well as other things. When I started taking methotrexate, I also began folic

acid. The pharmacist said he's never heard of anyone taking methotrexate and NOT

taking folic acid. It counteracts the methotrexate. I take the shots, not the

pills. They work better and have less side effects. Check with dad for a list of

docs in your area.

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

My RD has had me taking magnesium and potassium to help with the exhaustion.

Now, I am also on Kineret, which has been a miracal and literally a lifesaver

for me. I don't know how much good the magnesium and potassium would do without

the Kineret. I also take methotrexate, but that can ADD to the exhaustion, as

well as other things. When I started taking methotrexate, I also began folic

acid. The pharmacist said he's never heard of anyone taking methotrexate and NOT

taking folic acid. It counteracts the methotrexate. I take the shots, not the

pills. They work better and have less side effects. Check with dad for a list of

docs in your area.

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

Thank you soooooo much, I will try anything!!

________________________________

To: Stillsdisease

Sent: Saturday, March 24, 2012 11:45 AM

Subject: Re: how long does it take for kineret to finally work?

 

My RD has had me taking magnesium and potassium to help with the exhaustion.

Now, I am also on Kineret, which has been a miracal and literally a lifesaver

for me. I don't know how much good the magnesium and potassium would do without

the Kineret. I also take methotrexate, but that can ADD to the exhaustion, as

well as other things. When I started taking methotrexate, I also began folic

acid. The pharmacist said he's never heard of anyone taking methotrexate and NOT

taking folic acid. It counteracts the methotrexate. I take the shots, not the

pills. They work better and have less side effects. Check with dad for a list of

docs in your area.

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

Thank you soooooo much, I will try anything!!

________________________________

To: Stillsdisease

Sent: Saturday, March 24, 2012 11:45 AM

Subject: Re: how long does it take for kineret to finally work?

 

My RD has had me taking magnesium and potassium to help with the exhaustion.

Now, I am also on Kineret, which has been a miracal and literally a lifesaver

for me. I don't know how much good the magnesium and potassium would do without

the Kineret. I also take methotrexate, but that can ADD to the exhaustion, as

well as other things. When I started taking methotrexate, I also began folic

acid. The pharmacist said he's never heard of anyone taking methotrexate and NOT

taking folic acid. It counteracts the methotrexate. I take the shots, not the

pills. They work better and have less side effects. Check with dad for a list of

docs in your area.

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

Thank you soooooo much, I will try anything!!

________________________________

To: Stillsdisease

Sent: Saturday, March 24, 2012 11:45 AM

Subject: Re: how long does it take for kineret to finally work?

 

My RD has had me taking magnesium and potassium to help with the exhaustion.

Now, I am also on Kineret, which has been a miracal and literally a lifesaver

for me. I don't know how much good the magnesium and potassium would do without

the Kineret. I also take methotrexate, but that can ADD to the exhaustion, as

well as other things. When I started taking methotrexate, I also began folic

acid. The pharmacist said he's never heard of anyone taking methotrexate and NOT

taking folic acid. It counteracts the methotrexate. I take the shots, not the

pills. They work better and have less side effects. Check with dad for a list of

docs in your area.

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

The magnesium also helped immensly with my muscle cramps. I was having

absolutely horrifying foot cramps! My feet would literally fold in half. It was

like...how can that even physically happen!? Good luck!

April

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

The magnesium also helped immensly with my muscle cramps. I was having

absolutely horrifying foot cramps! My feet would literally fold in half. It was

like...how can that even physically happen!? Good luck!

April

Sent from my Verizon Wireless Phone

how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

igot almost immediate while still in the hospital  48hrs should be time to

seeresults if not calldr

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Saturday, March 24, 2012 12:31 PM

Subject: Re: how long does it take for kineret to finally work?

 

My name is , I just found out that I had Still's Nov of 2011. I have been

sick for about five years and the doctors could find out what was wrong. Im

trying to find a good doc around here, western kentucky, and just cant. I'm

frustrated too, the doc around here dont know what kind of meds i need. I have

had three docs say to " still's is a bad disease, you dont want that " and then

they give me meds for something else that doesnt work. I know its bad, I'm the

one living with it. Im just soooo tired of trying, it seems like things will

never get better. I cant stand being tired ALL the time, is there anything to

take?  My husband doesnt seem to understand how i can be hurting and tired all

the time, he likes to go do stuff when hes off work, he doesnt like to just sit.

Its been really hard on our marriage. My son is 15, I feel like i'm failing him

too. I try to do things with him but he knows i never feel good and he worries

about me. A kid shouldnt

have to worry about the parents.  I dont have a lot of swelling, i do have a

rash that looks nasty. If anybody know what would help with the tiredness i

would love to know. I hope you all have a good day and can enjoy it.

Thanks,

________________________________

To: Stillsdisease

Sent: Thursday, March 22, 2012 9:50 PM

Subject: how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

igot almost immediate while still in the hospital  48hrs should be time to

seeresults if not calldr

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Saturday, March 24, 2012 12:31 PM

Subject: Re: how long does it take for kineret to finally work?

 

My name is , I just found out that I had Still's Nov of 2011. I have been

sick for about five years and the doctors could find out what was wrong. Im

trying to find a good doc around here, western kentucky, and just cant. I'm

frustrated too, the doc around here dont know what kind of meds i need. I have

had three docs say to " still's is a bad disease, you dont want that " and then

they give me meds for something else that doesnt work. I know its bad, I'm the

one living with it. Im just soooo tired of trying, it seems like things will

never get better. I cant stand being tired ALL the time, is there anything to

take?  My husband doesnt seem to understand how i can be hurting and tired all

the time, he likes to go do stuff when hes off work, he doesnt like to just sit.

Its been really hard on our marriage. My son is 15, I feel like i'm failing him

too. I try to do things with him but he knows i never feel good and he worries

about me. A kid shouldnt

have to worry about the parents.  I dont have a lot of swelling, i do have a

rash that looks nasty. If anybody know what would help with the tiredness i

would love to know. I hope you all have a good day and can enjoy it.

Thanks,

________________________________

To: Stillsdisease

Sent: Thursday, March 22, 2012 9:50 PM

Subject: how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina

[Guest guest]

igot almost immediate while still in the hospital  48hrs should be time to

seeresults if not calldr

________________________________

To: " Stillsdisease " <Stillsdisease >

Sent: Saturday, March 24, 2012 12:31 PM

Subject: Re: how long does it take for kineret to finally work?

 

My name is , I just found out that I had Still's Nov of 2011. I have been

sick for about five years and the doctors could find out what was wrong. Im

trying to find a good doc around here, western kentucky, and just cant. I'm

frustrated too, the doc around here dont know what kind of meds i need. I have

had three docs say to " still's is a bad disease, you dont want that " and then

they give me meds for something else that doesnt work. I know its bad, I'm the

one living with it. Im just soooo tired of trying, it seems like things will

never get better. I cant stand being tired ALL the time, is there anything to

take?  My husband doesnt seem to understand how i can be hurting and tired all

the time, he likes to go do stuff when hes off work, he doesnt like to just sit.

Its been really hard on our marriage. My son is 15, I feel like i'm failing him

too. I try to do things with him but he knows i never feel good and he worries

about me. A kid shouldnt

have to worry about the parents.  I dont have a lot of swelling, i do have a

rash that looks nasty. If anybody know what would help with the tiredness i

would love to know. I hope you all have a good day and can enjoy it.

Thanks,

________________________________

To: Stillsdisease

Sent: Thursday, March 22, 2012 9:50 PM

Subject: how long does it take for kineret to finally work?

 

im getting frustrated with this disease already, kineret is not working!

=-{

ive had about 18 injections now, and im not feeling any better.

everything hurts, the knee swelling did not go down, its been months since my

knees looked normal

how long does it take for injections to finally kick in ?

i feel like im getting a lil worse, i started having stabbing/sharp pain when im

breathing in, and im out of breath a lot more often, and i started having high

blood pressure.

any miracle ways to get the swelling down? ive tried ice,coconut oil,flax seed

oil, vitamin e and fish oil too.(btw i took 10 pills of fish oil a day for a

while, but dont try it, i found my eyes to be very dry and i had to go down to 3

a day. how do i get rid of this crazy swelling? im taking prednisone again 10mg,

but thats probably not gonna do anything either.

injections are not that scary anymore,im getting used to them, it just drives me

crazy how some spots are more itchy than the other ones. (ive been poking my

stomach)

is it okey if i keep doing it in my abdomen?or do i honestly have to do legs and

other areas too? ive been switching sides from left to right. it looks like a

war zone, red dots everywhere and few bruises :-/ here and there. i actually

poked few blood vessels. turns out im not so smart after all. my hands are

getting more deformed, same with my toes. my husband calls em peanut toes.since

the weather is becoming warmer ive been avoiding everybody and staying inside

the house with the dog most of the time.im all swollen and that rash is soooo

embarrassing too, shows up whenever it feels like it, im starting to hate what

see in the mirror.

ive been trying to get in to u of m in ann arbor, so far no response. i keep

calling, keep faxing all the documents from docs office and still nothing. wuts

goin on? every time i call i get the same response " ur not in our system " im

going bananas here!

im still trying to get someone to cover the injections, i faxed my ppr work to

sobi patients assistance program and they told me my insurance will cover it for

less than 20$ a month, then the lady transfers me to acredo pharmacy, acredo

tells me i have to go thru medco and gives me phone number to specialty pharmacy

referral line which is actually wallgreens and wallgreens doesnt cover a dime.

once i finally found phone number for medco, i was told by a very rude guy to

have my doctor fax all the ppr work to them, they faxed it two days ago, and i

still no answer on the status of the prescription. am i really that unlucky? or

am i seriously doing everything wrong? i called the insurance company few times

too, all i get is im sorry im unable to help you n they transfer me.

this has been a pretty bad experience.

im honestly tired of everything, on top of that my mom noticed that theres

something wrong with me(shes 63 and ive been hiding stills from her]. now that

she knows, sometimes she thinks its her fault that im suffering and that usually

ends up with a crying session or she comes up with crazy ideas like: " you

probably got sick from your dog " and/or " its from smoking " . I know smoking is

bad, but honestly i feel like its helping me with the stress, im just hoping it

doesn't prevent kineret from working.

sorry for blah blah blahing but i dont feel i can deal with this on my own.

scary thing i read online about people using biologic meds or people with

autoimmune disease most likely to get leukemia? any truth in that?

-ewelina