Biologics

[Guest guest]

I am in the same boat as you are, Cristen. Mine is aggressive and

stops responding to meds. I have Anthem and so far I haven't had

any problems. If the med isn't formulary, I just have a higher

copay. The doc can write to the insurance company as well or even

call and request something to be approved. Best thing to do is call

your insurance carrier and see what they say. So far I haven't had

any issues, they even approved remicade (it had to be precertified)

and I hadn't even used any of the other biologics at the time! Marina

> Hi,

>

> Has anyone run into problems with trying to get insurance

companies to pay for the biologics (enbrel etc) when first diagnosed

with RA? I was told my RA is aggressive, so my idea is to try

everything.

>

> Cristen

>

>

[Guest guest]

I could not get on a biologic until I had an incomplete response to

mtx. Insurance companies always want you to try the lower cost meds

first and usually, if those don't work they will approve the higher

cost ones. The cost to the insurance of a biologic drug is less than

the cost over the life of a patient with untreated RA, since there

can be so much damage and so many health problems with not treating

it.

The mtx did work for me in combination with prednisone for about 6

months. When my disease worsened and mtx was not enough, the

insurance approved Humira. I didn't have any problems getting it

approved, the rheumy's office handled all the paperwork.

> Hi,

>

> Has anyone run into problems with trying to get insurance companies

to pay for the biologics (enbrel etc) when first diagnosed with RA?

I was told my RA is aggressive, so my idea is to try everything.

>

> Cristen

>

>

[Guest guest]

Ok, that is basically what my Rheumy told me ---I just wanted to be sure.

Thanks!

Cristen

[ ] Re: Biologics

I could not get on a biologic until I had an incomplete response to

mtx. Insurance companies always want you to try the lower cost meds

first and usually, if those don't work they will approve the higher

cost ones. The cost to the insurance of a biologic drug is less than

the cost over the life of a patient with untreated RA, since there

can be so much damage and so many health problems with not treating

it.

The mtx did work for me in combination with prednisone for about 6

months. When my disease worsened and mtx was not enough, the

insurance approved Humira. I didn't have any problems getting it

approved, the rheumy's office handled all the paperwork.

> Hi,

>

> Has anyone run into problems with trying to get insurance companies

to pay for the biologics (enbrel etc) when first diagnosed with RA?

I was told my RA is aggressive, so my idea is to try everything.

>

> Cristen

>

>

[Guest guest]

Hi, in UK Biologics havent been passed for use by a Government Body. You can

get them in extreme cases and I have been asking for Enbrel for ages but my

rheumatologist (who I have the greatest respect for) doesnt want me to take

Enbrel. She says as I ONLY have PA in one joint I dont qualify. But then they

tell me that my case is rare. It is like banging your head against a brick

wall. I was hoping to hear from any other sufferers out there from UK to hear

what there treatment is like. It seems in USA there are more specialists in PA.

In Uk I have only found one who is in the western side of country in Bath and it

is almost impossible for me to be able to see him.

Love and best wishes to you all,

Geraldine Dullaway

========================================

Message Received: Aug 19 2006, 09:25 PM

From: " S. Zorzi " <szorzi_1999@...>

Cc:

Subject: [ ] Re: surgery

Geraldine - so sorry to hear you are having so much trouble.

Hopefully the surgery will help. Do the doctors give you a reason

they won't try the biologics? It seems to me that if you are still

experiencing joint destruction after 2 years on a drug regimen, it

should be obvious that something different is needed! Are you

seeing a rheumatologist?

I live in the U.S. so maybe I'm just not understanding how the U.K.

health system works.

But even though we are far apart geographically, we are only an

email away from support and help and answers anytime you need us!

best regards,

sherry z

---

[Guest guest]

Geraldine, we have several members from UK on this group. I'm sure

you will hear from them soon.

One thing I'm pretty sure of - you have to keep *fighting* for the

best treatment for yourself. I'm sure that's the same no matter where

you live. The doctors and the insurance companies and the government

are not the ones who are suffering - we are. We are the ones lying

awake all night in terrible pain. We are the ones who can't do

simple, everyday things like go to the market or cook a meal. We are

the ones dealing not only with PA but with the side effects of the

meds. We are the ones who have to take care of " us. "

So, keep pestering your doctor. One thing that might help is

complaining more. I am not a complainer by nature - I tend to be a

stoic, just " suck it up " and suffer silently. I found out real quick

with this disease that this doesn't help you. It's best to keep

calling the doctors, keep emphasizing how much pain you are still in,

keep insisting that something *must* be done to stop further bone

destruction, etc.

Hang in there - it must get better eventually. I'm counting on that

myself!

sherry z

>

.. I was hoping to hear from any other sufferers out there from UK to

hear what there treatment is like. It seems in USA there are more

specialists in PA. In Uk I have only found one who is in the western

side of country in Bath and it is almost impossible for me to be able

to see him.

>

> Love and best wishes to you all,

> Geraldine Dullaway

[Guest guest]

In a message dated 20/08/2006 12:16:10 GMT Daylight Time,

geraldinedullaway@... writes:

She says as I ONLY have PA in one joint I dont qualify. But then they tell me

that my case is rare.

Hi again Geraldine,

I forgot to check the more recent posts to see if you had said anything else.

Well, maybe you only have it in one joint but it must be bad if they are

going to do surgery. That is a nightmare for you if your Rheumy is saying that.

If

she doesn't back you on it you can't be successful. This is something we have

spoken about before in this group. We need a device that is somehow remotely

connected to these people so we can press a button and say to them, 'It feels

like THAT.' Then they might understand a bit more. Having said that they are

not all like that. The two I go to are so good that you feel that they do feel

your pain.

Take care,

.

PS: I did check the more recent posts this time. lol

[Guest guest]

Hi, are you from the U.K. If so, what part. I live in Kent and cannot get

Biologics, which others in US cannot understand. I have tried since I developed

PA, and now need an ankle fusion because ankle has completely disintigrated.

My surgeon is worried that wound will not heal ( I had a biopsy which took ages

to heal). I feel that if I had been prescribed Biologics at the beginning I

would not be in this position.

kind regards,

Geraldine

[Editor's Note: Geraldine, we have a couple of people from the UK who have been

prescribed Enbrel so it appears that the doctors you are seeing or the National

Health personnel (I'm not sure how it works in your country)that you deal with

are not prescribing it for you - but it IS available so keep on pushing them to

give you the help you need. Kathy F.]

========================================

Message Received: Sep 11 2006, 06:19 PM

From: " viking_warlock " <viking_warlock@...>

Cc:

Subject: [ ] Hi all

Hi all,

I'm back from my travels to Slanchev Bryag (Sunny Beach to the non

locals) LOL well you didn't think I was going to go white water

rafting down the Danube or pony trecking in the Rila Mountains did

you. First or all we did travel on an ancient Russian Tupalev M154

jet. we were right at the front of the three engined rear mounted

plane all you could here was the sound of the air rushing by. We were

told on take off to hold up the table to stop it falling on us. There

was no entertainment on board but the drinks were cheap at least half

the price off British prices.

It poured down on the Sunday night. The drainage is poor and we were

walking in five inches of water in all the roads. The first car I saw

was an old Trabant but after that it was pretty much the same as most

of Europe except there are many more Fords in Britain.

Everything is cheap. We ate, four large beers, four colas, a bottle

of wine and eight meals for 48 Levs approximately £18. Copied designer

goods everywhere.

The most sickening sight was a dancing bear as well as other animals

such as snakes and even a small caman for photographs, at a price of

course. Such a magnificant animal is the brown bear. You just want

to touch it. love it and set it free, all at the samr time. But that

would to me, just adding to the creulty. so I declined.

I need a rest now.

Keep the light shining,

Ian.

[Guest guest]

Patty - I think you should contact the company that makes Enbrel

right away to find out what assistance they may be able to offer you

so that you can stay on their med through the gap. It's NOT a good

idea to stop taking these meds, because many people find that if you

do stop them, they never work as well as before once you restart

them. I've heard that over and over again, and I've even had a

slight experience with it in that reducing my dose of MTX (because of

high liver panels) caused a backslide that I never totally recovered

back from even when I got the dose back up. That's why we had to add

the Humira.

Call their 800 number and explain your problem and see what they can

do...

regards,

sherry z

> > ,

> ...First of all, (snip) you have to start on the biologics ...!

> > They will prevent further damage and help with the pain.

>

> It is so very encouraging to have active minds willing to share such

> important information.

>

> Whatever one's age, it's difficult to be forced into the backseat in

> life. It seems like the older I get, the more I want and need to

do!!!

> -- important things like hosting visiting grandchildren who need

> interested grandparents in their lives, visiting other sick folks

who

> can't get out, making quilts from the big stash of fabrics I've been

> hoarding for over 20-30 years until there was time to sew, gardening

> that is so therapeutic, crocheting, fishing with hubby,

volunteering

> as reading coach to first graders, etc., etc.

>

> Many thanks from a senior patty in the Pineywoods of East Texas

>

> (Yes, there are still woods in Texas but they're becoming seriously

> endangered by the crazy logging companies that are stripping the

land

> in their greed.)

>

[Guest guest]

Hi Sherry,

You've confirmed my observations to a " T " . I have lost ground but now

I'm at a loss on what to do.

I contacted with the Enbrel people (who were very patient, sympathetic

and helpful, to the best of their ability); they gave me several leads

which I followed. One group gave me a one time grant but it just

wasn't enough to keep me supplied through the gap. Another source that

takes only phone applications at the first of the month was quickly

filled leaving with no further options because the others had simply

run out of money.

Now I'm wondering if I should even try to resume taking the Enbrel

knowing that the supply may be interrupted yet again.

It would have helped if my rheumy had alerted me to these issues but

all she did was hand me some pamphlets to consider before making my

choice. I chose Enbrel because it has been on the market longest and

therefore had more background. Little did I know it was so expensive!!

There are so many things I wasn't told in the beginning, forcing me to

make uninformed decisions! And it certainly doesn't help that my brain

takes a leave of absence on my " down days " ; there just isn't enough

energy in me to fight complicated by downright ignorance.

It seems the patient is expected to know as much medicine as the

physician and be prepared to ask or demand what we need. Then, we need

a law degree to know how to utilize the system. It's times like these

that I tend to 'wither on the vine'.

Sorry to be so pessimistic right now. I'd been doing better the last

few days in spite of the pain.

Thanks for sharing your experiences,

patty in the Pineywoods of East Texas

[Guest guest]

Patty,

Call Medicare or you can probably do it online, but apply for hardship

assistance. I did and it has been a great help for me. It not only helps with

drug costs, but also reduces insurance premiums by a dollar or two. It is worth

a try. Good luck and God Bless,

I almost forgot, I have a phone number here that I called for help once and

since I only wrote down the initials, I don't remember what they stand for now

with my limited brain power, but they can answer questions on insurance problems

and complaints and give you suggestions that might help.

HICAP (800) 434-0222.

Janet in Ca

-------------- Original message --------------

From: " Patty B " <patty.bacon@...>

> Hi Sherry,

>

> You've confirmed my observations to a " T " . I have lost ground but now

> I'm at a loss on what to do.

>

> I contacted with the Enbrel people (who were very patient, sympathetic

> and helpful, to the best of their ability); they gave me several leads

> which I followed. One group gave me a one time grant but it just

> wasn't enough to keep me supplied through the gap. Another source that

> takes only phone applications at the first of the month was quickly

> filled leaving with no further options because the others had simply

> run out of money.

>

> Now I'm wondering if I should even try to resume taking the Enbrel

> knowing that the supply may be interrupted yet again.

>

> It would have helped if my rheumy had alerted me to these issues but

> all she did was hand me some pamphlets to consider before making my

> choice. I chose Enbrel because it has been on the market longest and

> therefore had more background. Little did I know it was so expensive!!

>

> There are so many things I wasn't told in the beginning, forcing me to

> make uninformed decisions! And it certainly doesn't help that my brain

> takes a leave of absence on my " down days " ; there just isn't enough

> energy in me to fight complicated by downright ignorance.

>

> It seems the patient is expected to know as much medicine as the

> physician and be prepared to ask or demand what we need. Then, we need

> a law degree to know how to utilize the system. It's times like these

> that I tend to 'wither on the vine'.

>

> Sorry to be so pessimistic right now. I'd been doing better the last

> few days in spite of the pain.

>

> Thanks for sharing your experiences,

>

> patty in the Pineywoods of East Texas

[Guest guest]

Patty - I would try again because you never know, you may react fine

and have good results. It's worth a try. I don't know any further

advice to help with the expense. I'm pretty sure that all of the

biologics are prohibitively expensive without insurance, so it's not

like you can just find a " cheap " one. They kick us when we're down,

don't they???

best regards,

sherry z

>

> Hi Sherry,

>

> You've confirmed my observations to a " T " . I have lost ground but now

> I'm at a loss on what to do.

[Guest guest]

" S. Zorzi " wrote:

> Patty - I think you should contact the company that makes Enbrel

> right away to find out what assistance they may be able to offer you

> so that you can stay on their med through the gap.

My call to Enbrel (etanercept) got a repeat of the names of groups who

" might " help. If this list allows, I'll share that information in a

separate post.

> Call their 800 number and explain your problem and see what they can

> do...

I've " explained " but all they can do is voice polite, patient,

apologetic words and read from their prepared lists/statements.

However, I called Patient Advocate which is " open " the first business

day of each month beginning at 11 am thru 1 pm. You have to dial, then

redial repeatedly until you get through. It took me about 1 1/2 hours

to get through initially to learn that I was caller 36 with a wait

time of 72 minutes. By then, all the funds available for 'auto-immune'

disease was spent and all they had to offer was the list of other

groups. The counselor encouraged me to call again next month.

From last month's emailed encouragement: " If you do not get through on

the phone lines the first time, don't despair. We can go back a year

to pick up past bills so just because you don't get enrolled right

away doesn't mean we won't be able to help with the current

treatment. " Meaning, once you've been accepted into their program,

they can/might reimburse you for your expenses retroactively. (I

confirmed that statement in today's call.)

What a day!!

My call to the Wal-Mart Specialty Pharmacy was more successful.

Between Medicare's gap being almost fulfilled and a balance from the

grant from HealthWell Foundation, my co-pay was a bit less than $300

on tonight's shipment. I just hope I haven't lost too much ground!

I can feel the PA working on my low back and hips, my toes and

fingers, my shoulders and neck. The ONLY way to get any sleep at night

is with the Ambien, regardless of how much pain medication I take. I'm

so thankful for a primary care doctor who continues to write

prescriptions for them, sparing me the lectures on addiction from the

rheumy.

Today's lesson: Persistence, perseverance and patience pay off!

[Guest guest]

Hi Sue...

You know, that's a good question. I just looked at my approval letter for

Enbrel, and it's approved forever. I can't imagine being without it though,

because I think the pain would come back right away. I was off MTX for just a

week and started feeling bad within a few days....I admit that might have

been psychological because I'm afraid of feeling so bad again.

Frosty Heidi in Mass.

" Be kinder than necessary, for everyone you meet is fighting some

kind of battle. " Happy 2009

In a message dated 1/15/2009 11:21:07 A.M. Eastern Standard Time,

pablejs@... writes:

I have been on Humara pen about 4 months and it has helped

tremendously. At first it stung when I would inject. Someone in this

group suggested to be sure to leave the alcohol dry before injecting.

That did the trick. Very little stinging after that.

I was wondering how long you stay on a biologic. My rheumy never said

and I was so consumed with just feeling better that I didn't ask. Is

this a lifelong thing?

Thanks,

Sue

**************A Good Credit Score is 700 or Above. See yours in just 2 easy

steps!

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www.freecreditreport.com/pm/default.aspx?sc=668072%26hmpgID=62%26bcd=De

cemailfooterNO62)

[Guest guest]

Hi there...I went off of enbrel for about 6 months or so since I had mouth

sores and the rheumy thought it was my enbrel..then went on humira and had

a horrid reaction to that. so I asked to go back on enbrel. I did and I

have been on it since 2005. It is working well so far. I have had

flares before on enbrel but they didn't last long and I have felt the best on

enbrel. if I have a flare, the rhemy increased my prednisone for a few days

and that took care of it. I think I have had one flare since 2005.

Hugs and good luck.

a

In a message dated 2/24/2010 4:32:34 P.M. Eastern Standard Time,

tgantzler@... writes:

I have had RA for close 20yrs. But have been lucky enough to have been

referred

to a fantastic Rheumatologist. I had been taking Enbrel for quite sometime

and

it seemed to be helping. While taking it I had a bad flare up and the Doc

took

me off of Enbrel and started me with Remicade treatment. I only had 2 of

them

and could not walk down the stairs after taking them. I told the doc about

it

and also told him that I would not take them anymore. I also was on Humira

which

didn't do a thing for me.

What I'm wondering is would it be worth it to try the Enbrel again? If so

I'll

bring it up to the Rheumatologist at my next appointment.

Tom g

[Non-text portions of this message have been removed]

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[Guest guest]

I have had RA for close 20yrs. But have been lucky enough to have been referred

to a fantastic Rheumatologist. I had been taking Enbrel for quite sometime and

it seemed to be helping. While taking it I had a bad flare up and the Doc took

me off of Enbrel and started me with Remicade treatment. I only had 2 of them

and could not walk down the stairs after taking them. I told the doc about it

and also told him that I would not take them anymore. I also was on Humira which

didn't do a thing for me.

What I'm wondering is would it be worth it to try the Enbrel again? If so I'll

bring it up to the Rheumatologist at my next appointment.

Tom g

[Guest guest]

Tom, it certainly would be worth a try. Good luck!

Sue

On Feb 24, 2010, at 2:55 PM, Tom G wrote:

> I have had RA for close 20yrs. But have been lucky enough to have

> been referred

> to a fantastic Rheumatologist. I had been taking Enbrel for quite

> sometime and

> it seemed to be helping. While taking it I had a bad flare up and

> the Doc took

> me off of Enbrel and started me with Remicade treatment. I only had

> 2 of them

> and could not walk down the stairs after taking them. I told the doc

> about it

> and also told him that I would not take them anymore. I also was on

> Humira which

> didn't do a thing for me.

> What I'm wondering is would it be worth it to try the Enbrel again?

> If so I'll

> bring it up to the Rheumatologist at my next appointment.