Re: Need Help with Remicade Approval- Urgent

[Guest guest]

Nickolai,

I am so sorry to hear of your wife 's trouble. While I cannot

help with your Remicade questions, someone else should pop up shortly

and help you with this question. I just wanted to say hello and to let

you know there are so many folks here who care and will be more than

happy to help you.

Please know you are both in my thoughts and as I said before one of the

folks who have been or are on Remicade should chime in shortly. Feel

free to post any topic because there is always someone here to help.

Terri G.

>

> Hello Dear Group,

>

> My wife 's 2-year battle with neurosarc is about to take a

> major turn: finally add CellCept and Remicade/Infliximab to the

> Prednisone. The Prednisone has helped the liver, spleen, lymph, and

> face granulomas, but it's causing her to lose bone, and it can't touch

> the terrible constellation of neuropathy pains and loss of feeling all

> over her body, or the autonomic neuropathy that threatens her

heartbeat

> and breathing.

>

> I am very worried that our health plan, even though it's a good one,

> won't pay for Remicade because it's " experimental " or off-label (and

> expensive). The local doctor who'll administer the IV infusions

doesn't

> know a great deal about sarc or neurosarc. The sarc specialist that's

> leading her care hasn't coughed up the journal articles and whatever

it

> takes to prove Remicade's the right med. So the local doc is actually

> asking *us* for evidence that Remicade/Infliximab is an established

way

> to treat neurosarc and Small Fiber Neuropathy.

>

> So this is a plea to any of you wonderful people who've taken

> Remicade/Inflix for your neurosarc, your sarc, or your small fiber

> neuropathy, your cranial neuropathy, your autonomic neuropathy, or

your

> cardiac autonomic neuropathy (she has all that), asking you for good

> *articles* or other *references in the medical literature* or *doctor

> visit reports* from your sarc docs that you can point us to (or

actually

> send us) to help get the insurance people to admit that Remicade is

> *normal* to treat what you suffer from.

>

> Thank you so much! This is an exciting time for us. Right now

> can't get down the stairs without stopping and sitting down

> and crying. But our goal that she set is to get back to 50% of her old

> self after 12 months. But it can only begin if we can get that

> Infliximab, since that's what her two sarc docs believe has the best

> chance at tackling the Small Fiber Neurop. Until she gets on the

double

> whammy, it seems like more and more parts of her body will lose

feeling

> each day (permanently?), and her heart will skip beats more and more

> often. Can you help?

>

> Thank you SO much. You have our very best wishes for your health

> improvement every day. We will find a cure. Until then, we have our

> families, our friends, our docs, and each other.

>

> In solidarity,

> Nickolai Cowell

> New Brunswick, NJ

> nbcowell@...

>

[Guest guest]

Nickolai;If you scroll down to the bottom of this page to where it says links, click on that and it will bring up information for you on Remicade and many other things, but you will find the Remicade articles. There's some good information there, Read through it, you will find articles you can print out to take to your doctor as well as send to the insurance company.

I just spent a year fighting my insurance company for Remicade, and we gave them as much information as we could find on Remicade and Sarcoid.

The Cleveland Clinic did one study and Dr. Om P. Sharma Has a website, he did the other study. So start there, read and copy theses articles

and please ask questions. I hope you don't have to fight your insurance company, I hope if you

just send the articles and a request from your doctor that, that will be enough. I wish you

much luck, I know what this road is like, as well as what your wife is going through, Remicade has

helped me so much, and others too, I'm sure you will hear from.

Good luck, and stay in touch.

Marla

Hello Dear Group,My wife 's 2-year battle with neurosarc is about to take a major turn: finally add CellCept and Remicade/Infliximab to the Prednisone. The Prednisone has helped the liver, spleen, lymph, and face granulomas, but it's causing her to lose bone, and it can't touch the terrible constellation of neuropathy pains and loss of feeling all over her body, or the autonomic neuropathy that threatens her heartbeat and breathing.

I am very worried that our health plan, even though it's a good one, won't pay for Remicade because it's " experimental " or off-label (and expensive). The local doctor who'll administer the IV infusions doesn't know a great deal about sarc or neurosarc. The sarc specialist that's leading her care hasn't coughed up the journal articles and whatever it takes to prove Remicade's the right med. So the local doc is actually asking *us* for evidence that Remicade/Infliximab is an established way to treat neurosarc and Small Fiber Neuropathy.

So this is a plea to any of you wonderful people who've taken Remicade/Inflix for your neurosarc, your sarc, or your small fiber neuropathy, your cranial neuropathy, your autonomic neuropathy, or your cardiac autonomic neuropathy (she has all that), asking you for good *articles* or other *references in the medical literature* or *doctor visit reports* from your sarc docs that you can point us to (or actually send us) to help get the insurance people to admit that Remicade is *normal* to treat what you suffer from.

Thank you so much! This is an exciting time for us. Right now can't get down the stairs without stopping and sitting down and crying. But our goal that she set is to get back to 50% of her old self after 12 months. But it can only begin if we can get that Infliximab, since that's what her two sarc docs believe has the best chance at tackling the Small Fiber Neurop. Until she gets on the double whammy, it seems like more and more parts of her body will lose feeling each day (permanently?), and her heart will skip beats more and more often. Can you help?

Thank you SO much. You have our very best wishes for your health improvement every day. We will find a cure. Until then, we have our families, our friends, our docs, and each other.In solidarity,

Nickolai CowellNew Brunswick, NJnbcowell@...

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

[Guest guest]

Hello Nickolai,

I've been on Remicade for a few years now, and it has been a good choice for me. I'll try to pull up some of the posts I've done on this issue. There's alot of them in the ARCHIVES.

For me, it has helped that horrid "inside the bone pain", as well as the muscle pain. It also did wonders for my pulmonary sarc, and up until California caught on fire this summer- we live only 2 miles from most of where No. Calif burnt for several months in a row-- so the smoke did me in. I also ended up with a bad cause of bronchitis/pneumonia that knocked me down-- so I am back on the oxygen.

What I've also noticed is that I have had a couple of instances of pericarditis (inflammation of the pericardial sac around the heart) that seems to be so much better for 3 1/2 wks following an infusion, and it's just the last couple of days prior to the next infusion (I am at maximum dose--10mg/kg and intervals - each 28 days) but my memory loss is not as severe, and I'm able to do so much more that previously.

It's has helped with the neuropathy in my legs and arms, but I am starting to have some additional problems with that--so I don't know if the lack of oxygen is playing into that, or if it's a hydration or vitamin/mineral thing.

I have found that MSM powder-- a natural nutrient that has been excluded from our soils and foods helps tremendously with the bone pain. I get mine from PUREMSM.COM-- I use the powder form as this is very rapidly synergised by just adding a tbsp to a 1/2 c of water, drinking it down, and literally within 10 mins-- that bone muscle pain is gone. There are no side effects, and it isn't something we can be allergic to. Also, it doesn't counteract or interact with other medications-- so that isn't an issue.

Hydration is also a huge issue, since we run constant low grade fevers from the inflammation, we are just on that edge of dehydration all the time. If your wife is one that doesn't get enough fluids down-- get some good herbal decaf teas, make suntea, make hot tea, whatever-- but push the fluids. All the muscles in our bodies are covered with a "myelin sheath" and it you don't have enough fluids-- that sheath is rubbing directly on the nerves-- and it is so very painful. Also, the joints are lubricated by synovial fluid-- again-- we have to have all these fluid levels just right-- and keep our electrolytes balanced, or this adds to the neuropathy.

High sugars-- (since most of us have already done the steroids - ie. prednisone) we have issues with our blood sugars-- high or low-- it adds up to neuropathy. So a diet that is high in refined sugars, processed foods, high fructose corn syrup is so very nasty. It is insult on top of illness.

These are some of the puzzle pieces that I've put together in dealing wiht this sarc monster for the last 18 yrs-- and by making changes in these areas-- I can be realitively comfortable.

Remicade is wonderfulif it works for you, and tough and possibly dangerous if it doesn't. More than 1 million people are on it--so it does have a decent track record for RA, Chrons and psoratic arthritis.

I am surprised that they're considering both Cellcept and Remicade-- generally they don't mix to BRMS. (Biological Response Modifiers.)

I am on Plaquenil, Methotrexate and Remicade. And it was add one medication at a time, see if it helps, then add the next. Starting more than one at a time only confuses things if she does have an allergic reaction.

I hope this helps, and I'll see what I can pull up on resources and articles.

Take care,

Tracie

NS Co-onwer/moderator

Re: Need Help with Remicade Approval- Urgent

Nickolai;

If you scroll down to the bottom of this page to where it says links, click on that and it will bring up information for you on Remicade and many other things, but you will find the Remicade articles. There's some good information there, Read through it, you will find articles you can print out to take to your doctor as well as send to the insurance company.

I just spent a year fighting my insurance company for Remicade, and we gave them as much information as we could find on Remicade and Sarcoid.

The Cleveland Clinic did one study and Dr. Om P. Sharma Has a website, he did the other study. So start there, read and copy theses articles

and please ask questions. I hope you don't have to fight your insurance company, I hope if you

just send the articles and a request from your doctor that, that will be enough. I wish you

much luck, I know what this road is like, as well as what your wife is going through, Remicade has

helped me so much, and others too, I'm sure you will hear from.

Good luck, and stay in touch.

Marla

On Fri, Oct 10, 2008 at 10:36 AM, lowlyworm1000 <nbcowell (AT) gmail (DOT) com> wrote:

Hello Dear Group,My wife 's 2-year battle with neurosarc is about to take a major turn: finally add CellCept and Remicade/Infliximab to the Prednisone. The Prednisone has helped the liver, spleen, lymph, and face granulomas, but it's causing her to lose bone, and it can't touch the terrible constellation of neuropathy pains and loss of feeling all over her body, or the autonomic neuropathy that threatens her heartbeat and breathing.I am very worried that our health plan, even though it's a good one, won't pay for Remicade because it's "experimental" or off-label (and expensive). The local doctor who'll administer the IV infusions doesn't know a great deal about sarc or neurosarc. The sarc specialist that's leading her care hasn't coughed up the journal articles and whatever it takes to prove Remicade's the right med. So the local doc is actually asking *us* for evidence that

Remicade/Infliximab is an established way to treat neurosarc and Small Fiber Neuropathy. So this is a plea to any of you wonderful people who've taken Remicade/Inflix for your neurosarc, your sarc, or your small fiber neuropathy, your cranial neuropathy, your autonomic neuropathy, or your cardiac autonomic neuropathy (she has all that), asking you for good *articles* or other *references in the medical literature* or *doctor visit reports* from your sarc docs that you can point us to (or actually send us) to help get the insurance people to admit that Remicade is *normal* to treat what you suffer from. Thank you so much! This is an exciting time for us. Right now can't get down the stairs without stopping and sitting down and crying. But our goal that she set is to get back to 50% of her old self after 12 months. But it can only begin if we can get that Infliximab,

since that's what her two sarc docs believe has the best chance at tackling the Small Fiber Neurop. Until she gets on the double whammy, it seems like more and more parts of her body will lose feeling each day (permanently? ), and her heart will skip beats more and more often. Can you help?Thank you SO much. You have our very best wishes for your health improvement every day. We will find a cure. Until then, we have our families, our friends, our docs, and each other.In solidarity,Nickolai CowellNew Brunswick, NJnbcowell (AT) gmail (DOT) com -- Marla BramerIndependent Beauty Consultant Kay mbramer (AT) marykay (DOT) comwww.marykay. com/mbramer