Re: Here we go again

[Guest guest]

Dear ,

Let's hope you get some really good responses and help on this one.

The first thing that occurs to me, of course, is that you are experiencing

the Herxheimer reaction. (But what do I know?!) However, most SD

sufferers don't experience this reaction, so I have heard.

You said your biggest concern is that you don't think you'll get any

help from the dermatologist. Well, one of the biggest hurdles in finding

help outside traditional medical circles is finding a doctor who will

prescribe the antibiotics. My advice would be not to give up on him!

Ellen

rheumatic Here we go again

Hi,

I guess I've been taking Minocin for about two years, but I've really

only been on the correct dose for me since last April. I take 100mg

twice a day. I get my prescription through a dermatologist, who

doesn't really know much about AP. When he finally upped me to this

dose, I noticed such improvement! My symptoms pretty much left. Well,

recently they seem to be back, plus a couple of new ones.

I've never actually been officially diagnosed, but my symptoms seem

to more closely resemble scleroderma. I have cuts all over my

reddened hands that bleed and are slow to heal. I am often fatigued

and sometimes have aches in my legs. I have Raynaud's. (This had

pretty much gone away until this past week). My fingernails are

starting to peel. From time to time I am experiencing nausea.

Diarrhea seems to be coming back, too. I think that my joints seem to

be okay so far, but then again my symptoms have been coming back a

little at a time, so who knows?

Can anyone give me an explanation of what might be happening? Do I

need to switch antibiotics? My biggest concern is that I'm really not

going to be able to get help from the dermatologist. I really

appreciate any advice that you all might have. Thank you so much!

Sincerely,

To unsubscribe, email: rheumatic-unsubscribeegroups

[Guest guest]

I would recommend that you diligently search for somebody to give you the

clindamycine iv's. It is only my opinion but it does not sound as if the

Minocin alone is holding off your disease. This is a very scarey concern for

you and us SDers.

[Guest guest]

In a message dated 3/4/03 6:40:04 PM, lynneandsantos@... writes:

<< you sound a lot like me.Ihad god results with AP at the beginning and was

able to drop my MTX a little.A few months later I was getting stiffer and

sorer but not having

skin problems.The MTX had totally softened the skin in a few months.Now at

the 2.5 year point with AP it is not working in any form .Needless to say I

have had to increase

the MTX and am getting sorer by the weekand naturally more depressed.Even the

I.V.s did not helpa bit . Lynne >>

I did not realize that people have to take the other drugs with AP.

Is this so, generally?

Pris

Disobedient or aggressive pig?

Check out " Potbellied Pig Behavior and Training " book at

www.valentinesperformingpigs.com

[Guest guest]

Hi Steph;

you sound a lot like me.Ihad god results with AP at the beginning and was

able to drop my MTX a little.A few months later I was getting stiffer and sorer

but not having

skin problems.The MTX had totally softened the skin in a few months.Now at the

2.5 year point with AP it is not working in any form .Needless to say I have had

to increase

the MTX and am getting sorer by the weekand naturally more depressed.Even the

I.V.s did not helpa bit . Lynne

o

p10

" accomp88 " wrote:

> Hi,

>

> I guess I've been taking Minocin for about two years, but I've really

> only been on the correct dose for me since last April. I take 100mg

> twice a day. I get my prescription through a dermatologist, who

> doesn't really know much about AP. When he finally upped me to this

> dose, I noticed such improvement! My symptoms pretty much left. Well,

> recently they seem to be back, plus a couple of new ones.

>

> I've never actually been officially diagnosed, but my symptoms seem

> to more closely resemble scleroderma. I have cuts all over my

> reddened hands that bleed and are slow to heal. I am often fatigued

> and sometimes have aches in my legs. I have Raynaud's. (This had

> pretty much gone away until this past week). My fingernails are

> starting to peel. From time to time I am experiencing nausea.

> Diarrhea seems to be coming back, too. I think that my joints seem to

> be okay so far, but then again my symptoms have been coming back a

> little at a time, so who knows?

>

> Can anyone give me an explanation of what might be happening? Do I

> need to switch antibiotics? My biggest concern is that I'm really not

> going to be able to get help from the dermatologist. I really

> appreciate any advice that you all might have. Thank you so much!

>

>

> Sincerely,

>

>

>

>

>

>

[Guest guest]

Hi Pris,

That depends on the individual. Many people, including myself, use an

anti-inflammatory until the AP starts to work effectively.

HTH

Dee

Re: rheumatic Here we go again

>

> In a message dated 3/4/03 6:40:04 PM, lynneandsantos@... writes:

>

> << you sound a lot like me.Ihad god results with AP at the beginning and

was

> able to drop my MTX a little.A few months later I was getting stiffer and

> sorer but not having

> skin problems.The MTX had totally softened the skin in a few months.Now at

> the 2.5 year point with AP it is not working in any form .Needless to say

I

> have had to increase

> the MTX and am getting sorer by the weekand naturally more depressed.Even

the

> I.V.s did not helpa bit . Lynne >>

>

> I did not realize that people have to take the other drugs with AP.

> Is this so, generally?

> Pris

>

> Disobedient or aggressive pig?

> Check out " Potbellied Pig Behavior and Training " book at

> www.valentinesperformingpigs.com

>

>

> To unsubscribe, email: rheumatic-unsubscribeegroups

>

>

>

[Guest guest]

hi ron.

i'm sorry you're getting the " run-around " from the insurance company. it can be

a long and frustrating process, especially when they have you jumping through

hoops like they do. often, it seems persistance is what wins the game....and it

appears you are willing to do what it takes which is great.

keep fighting!! as my dr told me when we started the process, the insurance

company will eventually approve the xolair just to shut us up!!!! =o)

good luck! keep us posted

heather

ronaldcrpntr <cowtrail@...> wrote:

After 2 months of fighting with the insurance company, they were even going to

send a

nurse to show me how to do the shots, then told me I was the wrong patient, they

now say

I'm approved again. They told me after two months they had no record of my

appeal. I

finally called my Sate Senator. After his office made some calls, the insurance

company

called and said I was approved (less then 24 hours, go figure), they will be out

Tuesday. I

will believe it when I see the whites of their eyeballs! I advised the insurance

Company I

would not take no for an answer, advised them what I was going to do and who I

was

going to contact, then I followed up, the " appeal " worked.

Ron

---------------------------------

[Guest guest]

Ron - thanks for sharing your experience and success being

aggressive with your insurance company. I'll keep my fingers

crossed that you see " the whites of their eyeballs " really soon.

Last year I heard Jr speak on his efforts and desire

to get a constitutional amendment recognizing access to quality

healthcare as a right for all citizens. He was not talking about

universal healthcare, but the right to access quality healthcare for

everyone. It was very powerful, especially for someone with a

chronic illness who was working with a lot of people without

healthcare at the time!

Take care all,

Addy

--- In , " ronaldcrpntr " <cowtrail@c...>

wrote:

>

>

> After 2 months of fighting with the insurance company, they were

even going to send a

> nurse to show me how to do the shots, then told me I was the wrong

patient, they now say

> I'm approved again. They told me after two months they had no

record of my appeal. I

> finally called my Sate Senator. After his office made some calls,

the insurance company

> called and said I was approved (less then 24 hours, go figure),

they will be out Tuesday. I

> will believe it when I see the whites of their eyeballs! I advised

the insurance Company I

> would not take no for an answer, advised them what I was going to

do and who I was

> going to contact, then I followed up, the " appeal " worked.

> Ron

[Guest guest]

Hi Pat,

I was wondering if you had any strategies for dealing with the insurance company

regarding the amount of co-payment? They approved Xolair, but have it on a

" Tier 4 " drug, which means, instead of paying $10 or $20 or $40 for it, I pay

25% of it, which amounts to $120.77. Therefore, that plus the dr visit makes it

nearly $150 a month, which is alot. I just wondered if you think it would help

to appeal that. My sense is that it is a set category and they woudn't budge,

but I thought I would ask you what you thought.

Any ideas would be helpful.

thanks,

Jody

MommaA <mommaa@...> wrote:

Insurance companies say " no " as long as they can to " save money " . They

eventually give the OK if all criteria are met. Sometimes when the criteria are

not quite met, I fight with them for my patients, and they approve. It is a

game. If you have the fortitude to last through the denials they will give in.

DON " T GIVE UP! Never say " I'm tired of fighting " . Anyone in the group can

email me if want some strategies. I'll be glad to help.

Pat

---------------------------------

Do you ?

Better first dates. More second dates. Personals

[Guest guest]

Check with your employer about insurance coverage (if that is who

your insurance is through).

Insurance companies are only authorized to approve what is included

in your summary of plan benefits. Many employers are frightened by

the cost of injectable drugs, and Xolair is only one of many that

are either available or on the horizon. Xolair puts me at #1 in my

company drug plan, because I am the only one using it and last year

the cost was almost $12,000 - fully 5% of all prescription spending

for my company. No other medication came close. Having said that,

on the medical side, I was way down the list.

If you can make a valid economic justification for the benefits of

Xolair, i.e., reduction in medications, reduction in other illness

or hospitalization caused or exacerbated by asthma, then it is an

easy decision for your employer to make.

Either way, you've got to bring this to someone's attention. Most

of the time people don't, and your employer has no idea who might

need certain medications, because new legalities in the health care

system prevents them from knowing unless you tell them.

Greg

>

>

>

> Insurance companies say " no " as long as they can to " save money " .

They eventually give the OK if all criteria are met. Sometimes when

the criteria are not quite met, I fight with them for my patients,

and they approve. It is a game. If you have the fortitude to last

through the denials they will give in. DON " T GIVE UP! Never

say " I'm tired of fighting " . Anyone in the group can email me if

want some strategies. I'll be glad to help.

>

>

>

> Pat

>

>

> ---------------------------------

> Do you ?

> Better first dates. More second dates. Personals

>

>

[Guest guest]

Genentech has a " copay assistance " program for people who have co-pays like

yours. Call your physician, ask them to contact Genentech for you. Your

specialty pharmacy should also have the proper paperwork. It may take a month

or two, but they may even reimburse for the months you had to pay yourself.

Good luck

__________________________________________________

[Guest guest]

Well, Well, Well! I was advised today that there was another mistake, I have not

been

approved, I am still under appeal. My insurance company says they do not

contract with

the company that was to come to the house (twice) and give me the shots. I

called my

Senator again, it seems I am now approved (they found additional information

they did not

have before). My Dr now has to get the Xolair and they will be giving me the

shots in his

office. They said it would take about a week.

I am again looking for the whites of their eyeballs!

I'll keep you posted in the continuing saga.

>

>

> After 2 months of fighting with the insurance company, they were even going to

send a

> nurse to show me how to do the shots, then told me I was the wrong patient,

they now

say

> I'm approved again. They told me after two months they had no record of my

appeal. I

> finally called my Sate Senator. After his office made some calls, the

insurance company

> called and said I was approved (less then 24 hours, go figure), they will be

out Tuesday.

I

> will believe it when I see the whites of their eyeballs! I advised the

insurance Company I

> would not take no for an answer, advised them what I was going to do and who I

was

> going to contact, then I followed up, the " appeal " worked.

> Ron

[Guest guest]

When I got to the point you are now (i.e., shots coming to doctor's

office in about a week), it actually did take about a week, so

hopefully you are almost there! Keep us posted.

Addy

> >

> >

> > After 2 months of fighting with the insurance company, they were

even going to send a

> > nurse to show me how to do the shots, then told me I was the

wrong patient, they now

> say

> > I'm approved again. They told me after two months they had no

record of my appeal. I

> > finally called my Sate Senator. After his office made some

calls, the insurance company

> > called and said I was approved (less then 24 hours, go figure),

they will be out Tuesday.

> I

> > will believe it when I see the whites of their eyeballs! I

advised the insurance Company I

> > would not take no for an answer, advised them what I was going

to do and who I was

> > going to contact, then I followed up, the " appeal " worked.

> > Ron

[Guest guest]

Thanks!!

MommaA <mommaa@...> wrote:

Genentech has a " copay assistance " program for people who have co-pays like

yours. Call your physician, ask them to contact Genentech for you. Your

specialty pharmacy should also have the proper paperwork. It may take a month

or two, but they may even reimburse for the months you had to pay yourself.

Good luck

__________________________________________________

[Guest guest]

Recieved an " official " letter from the insurance company, plus several phone

calls. I have

been approved, monday they will send the Meds to the Dr's office, hoping to go

in

Tuesday. I'm scheduled for 3 shots every two weeks and my co-pay is $45 every

two

weeks, so far so good.

Ron

> >

> >

> > After 2 months of fighting with the insurance company, they were even going

to send

a

> > nurse to show me how to do the shots, then told me I was the wrong patient,

they

now

> say

> > I'm approved again. They told me after two months they had no record of my

appeal. I

> > finally called my Sate Senator. After his office made some calls, the

insurance

company

> > called and said I was approved (less then 24 hours, go figure), they will be

out

Tuesday.

> I

> > will believe it when I see the whites of their eyeballs! I advised the

insurance Company

I

> > would not take no for an answer, advised them what I was going to do and who

I was

> > going to contact, then I followed up, the " appeal " worked.

> > Ron

[Guest guest]

Great news! Not a bad co-pay either, especially considering you're

on the maximum dose!

> > >

> > >

> > > After 2 months of fighting with the insurance company, they

were even going to send

> a

> > > nurse to show me how to do the shots, then told me I was the

wrong patient, they

> now

> > say

> > > I'm approved again. They told me after two months they had no

record of my appeal. I

> > > finally called my Sate Senator. After his office made some

calls, the insurance

> company

> > > called and said I was approved (less then 24 hours, go

figure), they will be out

> Tuesday.

> > I

> > > will believe it when I see the whites of their eyeballs! I

advised the insurance Company

> I

> > > would not take no for an answer, advised them what I was going

to do and who I was

> > > going to contact, then I followed up, the " appeal " worked.

> > > Ron

[Guest guest]

Received my first shots!!! I have big hopes and hopefully no more snags.

I do appreciate everyone's support, this is scary for the " new kid " .

> > >

> > >

> > > After 2 months of fighting with the insurance company, they were even

going to

send

> a

> > > nurse to show me how to do the shots, then told me I was the wrong

patient, they

> now

> > say

> > > I'm approved again. They told me after two months they had no record of my

appeal. I

> > > finally called my Sate Senator. After his office made some calls, the

insurance

> company

> > > called and said I was approved (less then 24 hours, go figure), they will

be out

> Tuesday.

> > I

> > > will believe it when I see the whites of their eyeballs! I advised the

insurance

Company

> I

> > > would not take no for an answer, advised them what I was going to do and

who I

was

> > > going to contact, then I followed up, the " appeal " worked.

> > > Ron

[Guest guest]

Good luck! Keep us posted.

Addy

> > > >

> > > >

> > > > After 2 months of fighting with the insurance company, they

were even going to

> send

> > a

> > > > nurse to show me how to do the shots, then told me I was the

wrong patient, they

> > now

> > > say

> > > > I'm approved again. They told me after two months they had

no record of my

> appeal. I

> > > > finally called my Sate Senator. After his office made some

calls, the insurance

> > company

> > > > called and said I was approved (less then 24 hours, go

figure), they will be out

> > Tuesday.

> > > I

> > > > will believe it when I see the whites of their eyeballs! I

advised the insurance

> Company

> > I

> > > > would not take no for an answer, advised them what I was

going to do and who I

> was

> > > > going to contact, then I followed up, the " appeal " worked.

> > > > Ron

[Guest guest]

Jody,

I had my issues too with the monthly copay amount I was responsible

for. It was costing my approximately $150 as well each month for

only Xolair alone. I then was referred to a foundation that helps

with out of pocket expenses. They're called PSI, inc. Call them at

800-366-7741 or visit the website at http://www.uneedpsi.org

They actually help with out of pocket expenses associated with the

diagnosis, not medication specific. So as long as you are Moderate

to Severe IgE Mediated Asthma then you can submit an enrollment form.

I had to go through the application process to qualify for the

program but I definitely encourage to try, it's worth the shot.

There's a possibility too that they reimburse for any expenses that

you paid for.

Good luck,

Marcha

>

>

>

> Insurance companies say " no " as long as they can to " save money " .

They eventually give the OK if all criteria are met. Sometimes when

the criteria are not quite met, I fight with them for my patients,

and they approve. It is a game. If you have the fortitude to last

through the denials they will give in. DON " T GIVE UP! Never

say " I'm tired of fighting " . Anyone in the group can email me if

want some strategies. I'll be glad to help.

>

>

>

> Pat

>

>

> ---------------------------------

> Do you ?

> Better first dates. More second dates. Personals

>

>

[Guest guest]

Thanks, Marcha!! That is really helpful advice.....my dr office put me in touch

with them (PSI) as well and they sent me an application, which I will fill out

and send back in. I sure hope they can help.

~~Jody

marching_antzz <marching_antzz@...> wrote:

Jody,

I had my issues too with the monthly copay amount I was responsible

for. It was costing my approximately $150 as well each month for

only Xolair alone. I then was referred to a foundation that helps

with out of pocket expenses. They're called PSI, inc. Call them at

800-366-7741 or visit the website at http://www.uneedpsi.org

They actually help with out of pocket expenses associated with the

diagnosis, not medication specific. So as long as you are Moderate

to Severe IgE Mediated Asthma then you can submit an enrollment form.

I had to go through the application process to qualify for the

program but I definitely encourage to try, it's worth the shot.

There's a possibility too that they reimburse for any expenses that

you paid for.

Good luck,

Marcha

>

>

>

> Insurance companies say " no " as long as they can to " save money " .

They eventually give the OK if all criteria are met. Sometimes when

the criteria are not quite met, I fight with them for my patients,

and they approve. It is a game. If you have the fortitude to last

through the denials they will give in. DON " T GIVE UP! Never

say " I'm tired of fighting " . Anyone in the group can email me if

want some strategies. I'll be glad to help.

>

>

>

> Pat

>

>

> ---------------------------------

> Do you ?

> Better first dates. More second dates. Personals

>

>