Re: Has anyone tried Kineret injections?

[Guest guest]

I take Kineret with good results.  There are several foundations out there to

help pay for your copy, www.copay.org and www.healthwellfoundation.org  would

suggest trying these. 

Gail

________________________________

To: Stillsdisease

Sent: Thursday, March 1, 2012 10:42 PM

Subject: Has anyone tried Kineret injections?

 

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been

progressing so quickly.

I would appreciate any type of advice or information, thank you

[Guest guest]

I take Kineret with good results.  There are several foundations out there to

help pay for your copy, www.copay.org and www.healthwellfoundation.org  would

suggest trying these. 

Gail

________________________________

To: Stillsdisease

Sent: Thursday, March 1, 2012 10:42 PM

Subject: Has anyone tried Kineret injections?

 

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been

progressing so quickly.

I would appreciate any type of advice or information, thank you

[Guest guest]

Hi,

My daughter and many people diagnosed with Still’s seem to be going on Kineret

more and more. It’s suppose to be very effective with minima side affects. If

you can check the resources which Gail offered you and find a grant or help for

the copay, it is probably worth it. Good luck to you sweetie. Keep up the good

fight ok?

Loving thoughts of healing,

From: Gail

Sent: Thursday, March 01, 2012 8:59 PM

To: Stillsdisease

Subject: Re: Has anyone tried Kineret injections?

I take Kineret with good results. There are several foundations out there to

help pay for your copy, www.copay.org and www.healthwellfoundation.org would

suggest trying these.

Gail

________________________________

From: ewelinasandulescu <mailto:ewelinasandulescu%40yahoo.com>

To: mailto:Stillsdisease%40yahoogroups.com

Sent: Thursday, March 1, 2012 10:42 PM

Subject: Has anyone tried Kineret injections?

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been

progressing so quickly.

I would appreciate any type of advice or information, thank you

[Guest guest]

Hi,

My daughter and many people diagnosed with Still’s seem to be going on Kineret

more and more. It’s suppose to be very effective with minima side affects. If

you can check the resources which Gail offered you and find a grant or help for

the copay, it is probably worth it. Good luck to you sweetie. Keep up the good

fight ok?

Loving thoughts of healing,

From: Gail

Sent: Thursday, March 01, 2012 8:59 PM

To: Stillsdisease

Subject: Re: Has anyone tried Kineret injections?

I take Kineret with good results. There are several foundations out there to

help pay for your copy, www.copay.org and www.healthwellfoundation.org would

suggest trying these.

Gail

________________________________

From: ewelinasandulescu <mailto:ewelinasandulescu%40yahoo.com>

To: mailto:Stillsdisease%40yahoogroups.com

Sent: Thursday, March 1, 2012 10:42 PM

Subject: Has anyone tried Kineret injections?

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been

progressing so quickly.

I would appreciate any type of advice or information, thank you

[Guest guest]

Welcome ewelina,

Often the onset is the worst of the years with Still's and it can be

difficult to find the medication that will control it or put it into

remission. Sometimes it takes trying several before they find the right

combination that works. I don't want to discourage you though. I was lucky

and with the third one was able to go into remission. I did have to take

Remicade and Methotrexate for nine months a few years back but now am just

on an anti-inflammatory again and do pretty well.

As Gail suggested there are a few sites that offer prescription help and if

those don't work please check our web site and see if the needy meds program

has any programs that will fit your situation. Their site works with most of

the pharmaceutical companies that offer assistance.

Please share or ask question whenever you like and join in on the weekly

chats if you like too. The reminders and link are posted each week.

I suggest you ask your doctor for something to help manage your pain if you

haven't already and share with them about your sadness or depression as well

It is a very important and normal reaction so don't feel alone or shy about

sharing with us because we understand. I take an anti-depressant.

Good evening to you,

-- Has anyone tried Kineret injections?

they still left me with 400$ co pay that i don't think i will be able to

pay. Im looking for a foundation or some type of grant that would be able to

cover the copay, but so far i was unsuccessful. It got to a point that its

very painful to walk, my knees have the most swelling, and the pain is

unbelievable.

I feel like Im becoming depressed since this disease has been progressing

so quickly.

I would appreciate any type of advice or information, thank you

[Guest guest]

My daughter was diagnosed at 14 and is 23 now. She was at her worst at onset as

well as 4+ years ago. She was on Kineret very successfully for 7 years. The

cost is horrid; however, with assistance it has been worth it. The injections

are very painful - just during the injection and for another 15 minutes or so.

Enbrel did not work for her, neither did methotrexate in the beginning. Cytoxan

didn't either. Her meds of choice at this point are Prednisone, Methotrexate

and Cyclosporine.

Good luck to you...

Has anyone tried Kineret injections?

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

[Guest guest]

My daughter was diagnosed at 14 and is 23 now. She was at her worst at onset as

well as 4+ years ago. She was on Kineret very successfully for 7 years. The

cost is horrid; however, with assistance it has been worth it. The injections

are very painful - just during the injection and for another 15 minutes or so.

Enbrel did not work for her, neither did methotrexate in the beginning. Cytoxan

didn't either. Her meds of choice at this point are Prednisone, Methotrexate

and Cyclosporine.

Good luck to you...

Has anyone tried Kineret injections?

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

[Guest guest]

Hi,

My rheumatologist put me on methotrexate first. I'm two years into it.

MTX is a 50 yr old drug that's now generic.

Note: there are some things like liver function and such that must be monitored.

Since last october injectable MTX has become in short supply, however the pill

(potentially less effective than a sub cutaneous shot) is readily available.

It may be worth the question to your doc.

Good luck

[Guest guest]

I have been on Kineret since June of 2011. I was put on this after a flareup of

Stills and it allowed me to get off the high doses of prednisone quickly.

Kineret has worked well for me. The only side effect I had was a rash near the

injection sites. This lasted for 2 or 3 weeks and now is gone. You are correct

that the drug is expensive. Once my insurance company ok'd it though, I only

have to pay a small copay. Check with the state agencies in your area to see if

there is any help you can get with the cost. Also contact the drug company or

see if your doctor has any ideas. I have had Stills for over 30 years and this

drug has been a blessing to me. It is like any other drug though and doesn't

work for everyone. Good luck and stay positive.

Alan

Has anyone tried Kineret injections?

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been progressing s o quickly.

I would appreciate any type of advice or information, thank you

[Guest guest]

Hi, I was diagnosed 5 yrs ago at 28yrs old & started with kineret injections,

along w/ prednisone & mtx pills. The injections are expensive, but saved me. I

had no side effects besides redness at the injections site. They helped sooooo

much & I was able to be removed from the prednisone fairly quickly. I stayed on

kineret for 3 yrs until my rhuemy said I was in ''medicated remission " and only

needed mtx. The mtx pills caused stomach polyps, so I was switched to the

injection mtx, which is currently in shortage & unavailable to me (just started

Arava).

I had rapidly fallen apart in the beginning, the disease came on so quickly. I

am a fighter & strong person, but found myself scared & depressed for the first

time. I have been on Prozac ever since. It seems to help. It will get easier,

stay positive! Good luck to you!!

--a

>

> Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been progressing so quickly.

> I would appreciate any type of advice or information, thank you

>

[Guest guest]

Hi, I was diagnosed 5 yrs ago at 28yrs old & started with kineret injections,

along w/ prednisone & mtx pills. The injections are expensive, but saved me. I

had no side effects besides redness at the injections site. They helped sooooo

much & I was able to be removed from the prednisone fairly quickly. I stayed on

kineret for 3 yrs until my rhuemy said I was in ''medicated remission " and only

needed mtx. The mtx pills caused stomach polyps, so I was switched to the

injection mtx, which is currently in shortage & unavailable to me (just started

Arava).

I had rapidly fallen apart in the beginning, the disease came on so quickly. I

am a fighter & strong person, but found myself scared & depressed for the first

time. I have been on Prozac ever since. It seems to help. It will get easier,

stay positive! Good luck to you!!

--a

>

> Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been progressing so quickly.

> I would appreciate any type of advice or information, thank you

>

[Guest guest]

Hi Ewelina,

I was diagnosed in June 2008, and took Kineret from July 2008 to January 2010.

I had very good results from it – it quickly controlled my symptoms and before

long I was functioning near-normally again. (At the beginning I was also still

taking mtx, but tapered off it after a couple of months.) I had no side

effects, except for some occasional itching around the injection sites, and I

did not find the injections painful (not pleasant, but not painful after the jab

of the needle going in). It is certainly horribly expensive, but I was lucky

enough to have good insurance at the time, and I ended up paying $60 for a

month's supply.

Good luck to you. Getting this disease caused me to think about my life

differently, but it has also made me much more thankful for all the things that

are going well for me. I hope you find lots of ways of helping yourself to stay

positive and hopeful.

Best wishes,

[Guest guest]

Hi Ewelina,

I was diagnosed in June 2008, and took Kineret from July 2008 to January 2010.

I had very good results from it – it quickly controlled my symptoms and before

long I was functioning near-normally again. (At the beginning I was also still

taking mtx, but tapered off it after a couple of months.) I had no side

effects, except for some occasional itching around the injection sites, and I

did not find the injections painful (not pleasant, but not painful after the jab

of the needle going in). It is certainly horribly expensive, but I was lucky

enough to have good insurance at the time, and I ended up paying $60 for a

month's supply.

Good luck to you. Getting this disease caused me to think about my life

differently, but it has also made me much more thankful for all the things that

are going well for me. I hope you find lots of ways of helping yourself to stay

positive and hopeful.

Best wishes,

[Guest guest]

I was on Kineret for about 9 months. I had previously been on methotrexate for

about two years, but my wife and I wanted to have kids, so the doc put me on

Kineret.

I had zero issues while on it. No flares, no rashes, no fevers, no swollen

joints.

I have successfully stopped all medication (for now), and am currently

symptom-free.

Oh yeah, I'm 35, diagnosed at 31.

Best of luck.

>

> Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been progressing so quickly.

> I would appreciate any type of advice or information, thank you

>

[Guest guest]

I was on Kineret for about 9 months. I had previously been on methotrexate for

about two years, but my wife and I wanted to have kids, so the doc put me on

Kineret.

I had zero issues while on it. No flares, no rashes, no fevers, no swollen

joints.

I have successfully stopped all medication (for now), and am currently

symptom-free.

Oh yeah, I'm 35, diagnosed at 31.

Best of luck.

>

> Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the past

month and few different anti inflammatory meds, but none of them worked so far.

My reumatologist suggested Kineret daily injections, i was wondering if anyone

has ever tried them and what were the results, I know its very expensive but

luckily my insurance will cover 80% of the cost for the first prescription, they

still left me with 400$ co pay that i don't think i will be able to pay. Im

looking for a foundation or some type of grant that would be able to cover the

copay, but so far i was unsuccessful. It got to a point that its very painful to

walk, my knees have the most swelling, and the pain is unbelievable. I'm only 23

years old and my doctor doesn't want to try mtx since I still would like to have

kids in the future. Can you tell me what kind of drugs are you talking so maybe

I can suggest that to my doctor? I feel like Im becoming depressed since this

disease has been progressing so quickly.

> I would appreciate any type of advice or information, thank you

>

[Guest guest]

I was pre approved with healthwell foundation at first, but currently they don't

have any funding for stills. Later on i found out that the pharmacy worker who

filled out my app online applied for Dupuytren's Disease and they did approve me

for other type of medication that would not help me with still's. its pretty

hard to find any type of help for still's disease.

company that makes kineret has some type of assistance, but the paper work to

fill out is pretty complicated, I'm definitely working on it, and hopefully it

will work out somehow.

>

> I take Kineret with good results.  There are several foundations out there to

help pay for your copy, www.copay.org and www.healthwellfoundation.org  would

suggest trying these. 

> Gail

[Guest guest]

I was pre approved with healthwell foundation at first, but currently they don't

have any funding for stills. Later on i found out that the pharmacy worker who

filled out my app online applied for Dupuytren's Disease and they did approve me

for other type of medication that would not help me with still's. its pretty

hard to find any type of help for still's disease.

company that makes kineret has some type of assistance, but the paper work to

fill out is pretty complicated, I'm definitely working on it, and hopefully it

will work out somehow.

>

> I take Kineret with good results.  There are several foundations out there to

help pay for your copy, www.copay.org and www.healthwellfoundation.org  would

suggest trying these. 

> Gail

[Guest guest]

Since stills disease is pretty rare and insurance companies often don & #39;t

approve any drugs for stills, my rheumatologist uses the diagnosis codes for

rheumatoid arthritis when getting drugs approved. It has worked for me and is

maybe something you can talk to your doctor about.

[Guest guest]

Since stills disease is pretty rare and insurance companies often don & #39;t

approve any drugs for stills, my rheumatologist uses the diagnosis codes for

rheumatoid arthritis when getting drugs approved. It has worked for me and is

maybe something you can talk to your doctor about.

[Guest guest]

thank you ill definitely ask him about that.

I know its rare but how rare? thats the part i don't understand, why drug

companies don't fish out stills disease patients and offer them medications for

free, its not like i tried getting this disease on purpose. they would help many

people wouldn't they?

>

> Since stills disease is pretty rare and insurance companies often don & #39;t

approve any drugs for stills, my rheumatologist uses the diagnosis codes for

rheumatoid arthritis when getting drugs approved. It has worked for me and is

maybe something you can talk to your doctor about.

>

>

>

[Guest guest]

i have been on kineret for 2 yrs little side effects works well for me was

toldin the beginning 600 a month but thru ins and mail order lesas thaan 100 for

three  months also contact med provider than can sometimes help

 

________________________________

To: Stillsdisease

Sent: Friday, March 2, 2012 2:17 PM

Subject: Re: Has anyone tried Kineret injections?

 

thank you ill definitely ask him about that.

I know its rare but how rare? thats the part i don't understand, why drug

companies don't fish out stills disease patients and offer them medications for

free, its not like i tried getting this disease on purpose. they would help many

people wouldn't they?

>

> Since stills disease is pretty rare and insurance companies often don & #39;t

approve any drugs for stills, my rheumatologist uses the diagnosis codes for

rheumatoid arthritis when getting drugs approved. It has worked for me and is

maybe something you can talk to your doctor about.

>

>

>

[Guest guest]

Hi Ewelina,

I was on Kineret for about 3 months. The first month seemed to go OK. I

was hopeful for the help, but then i started to develop skin reactions. It

became very painful to have the injection (burning) and injecting VERY

slowly seemed to make that a bit more tolerable, but then I started getting

huge red raised, painful areas around each injection site. After a few weeks

of this I noticed I was having to pick and choose where to have the shot

so as not to run into one of those raised painful areas from a previous day!

The dr. told me to try to hang in there for a while because a lot of

people get over that sensitivity and go on to have a great relationship with

Kineret. I just wasn't one of those people!

Best of luck to you! Let us know what you decide. Whatever you do, keep

an open mind, and try to stay positive. Remain hopeful and be in the best

place mentally to begin something new! In other words, don't let my

comment scare you away! This could be your ticket to a better quality of life!

hugs,

Jo

In a message dated 3/1/2012 10:42:47 P.M. Eastern Standard Time,

ewelinasandulescu@... writes:

Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the

past month and few different anti inflammatory meds, but none of them worked

so far.

[Guest guest]

I have been on Kineret for a few years now, and aside from the slightly

painful injections I am glad to be on it as I have been as well as I've

been over the past 9 years, although I still suffer from a fair amount of

trouble.

A few things I found that help with the injections are as follows...1st

and foremost...I allow the Kineret to warm to room temp for 1/2 of an hour,

and that helps out a lot on its own....2nd I found an area next to my

morphine pump implant that is pretty " numb " where I can inject with little

effort. When I have to give that area a break I seem to find my upper/front

part of my leg (2-3 " below the crotch area) works alright. I do know from

experience it burns 10x as bad when it is cold, which is how it is stored.

Any other questions feel free to ask. I am not on list too often anymore

but still scan through to see if I can help someone in some way or another.

This is a fantastic list for this type f info and support!

Kirk.

> **

>

>

> Hi Ewelina,

>

> I was on Kineret for about 3 months. The first month seemed to go OK. I

> was hopeful for the help, but then i started to develop skin reactions. It

> became very painful to have the injection (burning) and injecting VERY

> slowly seemed to make that a bit more tolerable, but then I started

> getting

> huge red raised, painful areas around each injection site. After a few

> weeks

> of this I noticed I was having to pick and choose where to have the shot

> so as not to run into one of those raised painful areas from a previous

> day!

> The dr. told me to try to hang in there for a while because a lot of

> people get over that sensitivity and go on to have a great relationship

> with

> Kineret. I just wasn't one of those people!

>

> Best of luck to you! Let us know what you decide. Whatever you do, keep

> an open mind, and try to stay positive. Remain hopeful and be in the best

> place mentally to begin something new! In other words, don't let my

> comment scare you away! This could be your ticket to a better quality of

> life!

>

> hugs,

> Jo

>

>

> In a message dated 3/1/2012 10:42:47 P.M. Eastern Standard Time,

> ewelinasandulescu@... writes:

>

> Hi, I was recently diagnosed with Still's, Ive been on sulfazine for the

> past month and few different anti inflammatory meds, but none of them

> worked

> so far.

>

>