Re: Xolair and Remicade??

[Guest guest]

Pandora,

You've been through a lot, moving and now unearthing this latest

medical issue.

Since going off pred, I have been having chronic low grade pain in

my right hand and foot. Arthritis runs in my family, and I'm

assuming this is the early signs of it presenting in me. Of course

I didn't have any trouble while taking all that pred. Still, it's

nothing like what you are going through. Keep us posted on how

things are going with the rheumatologist...sounds like you found a

good one.

Take care,

Addy

[Guest guest]

Pandora

I am on prednisone 'forever' because of an underlying autoimmune

disorder that was unmasked about 5 years ago when I started taking

Singulair.

Fortunately, I can manage my condition with 10 mg of pred on

alternate days, although some times I have a flare-up that requires

a burst of pred to get things back in line.

In my case, the disorder is hypereosinophilia, probably from Churg-

Strauss Syndrome. The ONLY treatment is prednisone. I saw a

specialist at Deaconess Beth Israel hospital several years ago (Dr.

Weller). He said that taking pred at low dosages was probably

not going to do me as much harm as the inevitable heart failure that

would occur if I didn't take it.

This past week I have been having problems (chest pain cause by

fluid retention) that was quickly alleviated with a burst of pred

and naproxen sodium (Aleve). Interesting - I had the exact same

problem at the exact same time last year, and treated it the same

way. My Dr. had an echocardiogram done last year with no trouble

found. However, there is no question in my mind that there was a

problem.

Some times it is hard to keep things in perspective because I want

to get off the pred. However, I would much rather spend a full life

with my children, even if it means taking some prednisone.

Greg

--- In , " keemaka42 " <keemaka42@y...>

wrote:

>

> No one has heard from me for a bit because I have been relocating

to a

> different part of Texas, plus I hit a major health snag.

>

> Is anyone taking one of the new Biological Response Modifiers (like

> Remicade) in addition to their Xolair?

>

> The drop in my steroid dose has unmasked an underlying auto-immune

> disease that is causing very severe inflammatory arthritis; thanks

to

> a new and very talented rheumatologist, we are well on the way to a

> startling diagnosis...what everyone thought was sero-negative

> rheumatoid arthritis all these years is probably a variant of

Crohn's

> disease. I have no choice about aggressive therapy; I have

extensive

> damage to tendons and joints already, but I am trying to scope out

> whether anyone has any experience with combining two or more

powerful

> drugs like this. I'll be monitored closely, and it won't be the

first

> time I've blazed a pharmaceutical trail, but we're all a tad

nervous.

>

> Thanks in advance for info you care to share...

>

> Pandora

[Guest guest]

Greg,

I just read your message with great interest. I also have been

diagnosed with idiopathic hypereosinophilia (one year ago), I've

never known another person with this. It took my doctors about a

year to come up with this dianogsis. Several doctors diagnosed me

with Churg-Strauss, but my allergist simply dismissed that as not

possible. To their credit they all did consult with each other at

length. I was told that they know so little about this that it

could get better on it's own or maybe never. I also take 6mg of

medrol a day to manage this, but I end up doing bursts about once a

month. I've found that Xolair really does help control MANY of the

symptoms of this condition very well. The main difference I notice

is that I actually have some energy. I also have a 4-year-old and I

know how important it is to control this condition so you can live a

full life with your family. Asthma wasn't actually my biggest

concern, but it help me qualify for the drug.

I am now pregnant (10 weeks) and as far as I can find, one of the

first pregnant women to take this drug which is kind of scary. I

totally credit it with my being able to get pregnant, though.

Anyway, best of luck to you. I understand how terribly frustrating

this condition can be.

Peggy

> >

> > No one has heard from me for a bit because I have been

relocating

> to a

> > different part of Texas, plus I hit a major health snag.

> >

> > Is anyone taking one of the new Biological Response Modifiers

(like

> > Remicade) in addition to their Xolair?

> >

> > The drop in my steroid dose has unmasked an underlying auto-

immune

> > disease that is causing very severe inflammatory arthritis;

thanks

> to

> > a new and very talented rheumatologist, we are well on the way

to a

> > startling diagnosis...what everyone thought was sero-negative

> > rheumatoid arthritis all these years is probably a variant of

> Crohn's

> > disease. I have no choice about aggressive therapy; I have

> extensive

> > damage to tendons and joints already, but I am trying to scope

out

> > whether anyone has any experience with combining two or more

> powerful

> > drugs like this. I'll be monitored closely, and it won't be the

> first

> > time I've blazed a pharmaceutical trail, but we're all a tad

> nervous.

> >

> > Thanks in advance for info you care to share...

> >

> > Pandora

[Guest guest]

Peggy,

Congratulations - you are in more 'select' groups than you knew!

When I first came down with severe symptoms about 5 years ago, it

landed me in the hospital for 10 days while specialist after

specialist scratched their heads in wonderment. It was kind of

amusing in a perverse sort of way - I had a host of med students

visiting me at all hours of the day for the first three days or so.

Once they figured out that they didn't know what it was, they

stopped coming.

Dr. Weller (Temple Beth Israel Hospital - Boston) is one of

the few specialists in the world on this condition. He told me that

there are probably only a few hundred individuals worldwide that

have DIAGNOSED the condition. No knowledge of course on those who

get it and just die, usually of heart failure.

There is another group on the internet for Vasculitis that I used to

read but don't bother with any longer. There are so many different

manifestations that the info was not relevant.

One question - are you now or were you ever on Singulair? There is

some evidence to suggest that this is CAUSED by Singulair, while

others maintain Singulair just unmasks the condition as patients are

able to taper steroid dependency while taking Singulair. Just

curious.

Also, what is the prognosis as far as you being able to reduce oral

steroids? As indicated, I will probably never be off them entirely.

Greg

--- In , " paroof " <Peggy.@c...>

wrote:

>

>

> Greg,

>

> I just read your message with great interest. I also have been

> diagnosed with idiopathic hypereosinophilia (one year ago), I've

> never known another person with this. It took my doctors about a

> year to come up with this dianogsis. Several doctors diagnosed me

> with Churg-Strauss, but my allergist simply dismissed that as not

> possible. To their credit they all did consult with each other at

> length. I was told that they know so little about this that it

> could get better on it's own or maybe never. I also take 6mg of

> medrol a day to manage this, but I end up doing bursts about once

a

> month. I've found that Xolair really does help control MANY of

the

> symptoms of this condition very well. The main difference I

notice

> is that I actually have some energy. I also have a 4-year-old and

I

> know how important it is to control this condition so you can live

a

> full life with your family. Asthma wasn't actually my biggest

> concern, but it help me qualify for the drug.

>

> I am now pregnant (10 weeks) and as far as I can find, one of the

> first pregnant women to take this drug which is kind of scary. I

> totally credit it with my being able to get pregnant, though.

>

> Anyway, best of luck to you. I understand how terribly

frustrating

> this condition can be.

>

> Peggy

[Guest guest]

Peggy -

Forgot to mention - congratulations on your pregnancy. I have two

boys - a 6 yr old and a 10 week old. Pics are in the photos link.

Greg

[Guest guest]

Greg,

That's kind of funny about the med students, I know what you mean.

I had two surgeries and several hospital stays before anyone was

willing to consider that all my problems were related. Finally my

allergist admitted me to the hospital (University Hospital at the UW

Wisconsin) after the prednisone failed to stop my vomiting after a

week. That time he got several different specialists together to

work on a diagnosis. I remember the day they all came into my room

(14 of them including residents and med students) to " announce " that

they had a diagnosis. I swear to god, they were shaking hands and

patting each other on the backs. I'm not sure they realized how it

appeared to me. Anyway, I do appreciate that they all worked

together instead of the usual letter writing back and forth.

After I got out of the hospital he started me in interferon to see

if he could wean me off of medrol (prednisone) with that. The

interferon was WAY WORSE than the medrol.

My doctor also consulted with Dr. Gerald J. Gleich (another expert)

at the University of Utah and sent him samples of my blood. Dr.

Gleich thought I probably had eosinophilia but wasn't sure. He also

sent samples to some study being done at Harvard University. Then

he sent me up to Mayo in Rochester, MN. The doctor there told me to

stop the interferon, thank god. The doctor there said he didn't

think I had eosinophilia. He also started me on this itraconazole

nasal wash twice a day because he says there is some evidence that

some people are violently allergic to the just the regular old

fungus that everyone has in their sinuses. Ok. I didn't see much

difference with that. So, not all doctors agree on what it is that

I have, but the vast majority of those that I've seen seem to

believe that I do have eosinophilia.

I had not been able to get below 10mg of medrol a day until I

started the Xolair. Now I am at 5mg and even then taking a two week

burst (24mg medrol a day for one week, then 12mg the next week) just

about every two weeks. So, I'm not sure that 5mg is actually

working for me. However, as I mentioned, I am pregnant and that may

be causing additional problems. So, who knows? My doctor is still

hopeful that I may be able to get off medrol, but he wants to wait

to make any more changes to my medicines until after I have the

baby.

I started taking Xolair as a last ditch effort to help me lower the

medrol. Amazingly it is worked. Even if I can't get of the medrol,

I feel better than I have in two years. It has definitely improved

my quality of life.

Yes, I was on Singulair once shortly after I got sick for the first

time (2 years ago). The pulmonologist I saw put me on it for about

a month. Several people have mentioned that it might cause this

problem, but I don't know. I was already sick before I took it and

I was on it for such a short time. Did you take it?

Unfortunately it sounds to me like maybe you have had more serious

problems with your eosinophilia than I have since your heart is

affected. As of now, I have not had any heart problems. They tell

me that the organs that are currently affected in my body are my

sinuses, my lungs, my gastrointestinal tract, my pancreas, and my

skin.

I saw the photos of your boys and they are absolutely adorable!

They certainly make the struggle worthwhile, don't they?

I apologize that this is such an incredibly long post. It's just

that I am so excited to find someone else to talk to about this.

Peggy

>

>

> Peggy,

>

> Congratulations - you are in more 'select' groups than you knew!

>

> When I first came down with severe symptoms about 5 years ago, it

> landed me in the hospital for 10 days while specialist after

> specialist scratched their heads in wonderment. It was kind of

> amusing in a perverse sort of way - I had a host of med students

> visiting me at all hours of the day for the first three days or

so.

> Once they figured out that they didn't know what it was, they

> stopped coming.

>

> Dr. Weller (Temple Beth Israel Hospital - Boston) is one of

> the few specialists in the world on this condition. He told me

that

> there are probably only a few hundred individuals worldwide that

> have DIAGNOSED the condition. No knowledge of course on those who

> get it and just die, usually of heart failure.

>

> There is another group on the internet for Vasculitis that I used

to

> read but don't bother with any longer. There are so many

different

> manifestations that the info was not relevant.

>

> One question - are you now or were you ever on Singulair? There

is

> some evidence to suggest that this is CAUSED by Singulair, while

> others maintain Singulair just unmasks the condition as patients

are

> able to taper steroid dependency while taking Singulair. Just

> curious.

>

> Also, what is the prognosis as far as you being able to reduce

oral

> steroids? As indicated, I will probably never be off them

entirely.

>

> Greg

[Guest guest]

thank you everyone. I will let you know ow the therapy goes, although

it will take several weeks to get started and see changes, etc.

I have tried Singulair several different times and at a couple of

different doses and really saw no significant change...at my most

severe it changed the *timing* of my worst wheezing by a few

hours...ie instead of waking up coughing at 3am I woke up at 1am, so

for me it was pretty much a wash...

I have never shown much eosinophilia nor high IGE levels, mostly

because of the very high pred doses I used to take. (I belong to a

small group of asthmatics who have steroid resistant disease, meaning

we need whopping big doses to get the effect we need) Generally

experts all agree that there must be an underlying " something else "

going on in patients like me, but that is as far as the consensus

goes<vbg>.

I suspect they will eventually find that drugs like Xolair actually do

*more* than they were originally created to do...we just have to hope

that the " more " is all positive!

Thanks again for the support...

Pandora

[Guest guest]

Peggy,

I was on Accolate for about 18 mos and then Singulair for about a

year when I developed my problem with eosiniphilia. It hit me hard

right around Christmas 1998, just after the birth of my first son.

I was having problems with chronic diarrhea, chills, fever and

severe chest pains. I went my (former) doctor who told me that I

probably had just picked up some parasitic infection, even though

xrays showed an Ilius (you'll have to look that one up - I can't

really explain it). He gave me Cipro and sent me home.

I tried to get in to see a gastroenterologist but was told it was 6

weeks wait. Went to the ER on Christmas night and was told by the

jerk on call that I should take some Pepto Bismol and go home.

Finally, I got in to see a gastroenterologist friend of my father

who sent me for CT scans. I wasn't even home from the scan before

he had called and said he was admitting me to NC Baptist Hospital (a

major teachnig hospital in NC) because of massive fluid accumulation

around my heart and stomach.

After being admitted, I saw a cardiologist who used a 4 " needle to

pull fluid off my heart. He got about 1/2 liter, and the next day I

drained about another 1/4 liter. I actually looked like one of those

cartoon characters that spurt water after being shot - I had a drain

plug in my chest and when they removed it I squirted all over the

place.

In the mean time, I started having violent allergic reactions to

just about everything. My face swelled, my hand swelled, and I had

hives all over my body. My dad said I looked like Ewing

after losing a fight (except for the black part).

I also was treated to the joys of endoscopy and colonoscopy, had my

stomach suctioned for four days (couldn't eat or drink anything, of

course), and capped it all off with a bone marrow biopsy.

The net/net was - no cause found, hence, idiopathic

hypereosiniphilia.

The good news is that although I was told that I would probably not

leave the hospital, 5 years later I am still annoying the heck out

of everybody.

Several months later, I was told by Dr. Weller (Beth Israel Boston)

that my heart would probably do me in. Now I am very paranoid about

any abnormality in how I feel. I get chest pains about once a year

for a week or so. Last year I got checked out while it was

happening - no trouble found. I have also been to a cardiologist

several times prior and gotten the same answer.

Been having problems the last few weeks but I don't want to go get

checked because I expect to get the same answer. The pains don't

keep me from doing anything (no shortness of breath, etc.) it just

hurts.

I do exercise regularly with both weights and aerobic activity. The

Xolair has helped immensely on this front. I get myself checked on a

regular basis, too. Always get good checkups. I do wish, though,

that I could get a definitive answer about the chest pains. It

can't be normal.

I am seeing my Hematologist in 10 days and will ask him again what I

should do. However, I am afraid that like the eosiniphilia, I may

never get an answer on this one.

I appreciate hearing your info, too. Even though it is

somewhat 'off the track' for this group, I think we can all benefit

from hearing each other's stories.

Best wishes

Greg

--- In , " paroof " <Peggy.@c...>

wrote:

>

>

> Greg,

>

> That's kind of funny about the med students, I know what you

mean.

> I had two surgeries and several hospital stays before anyone was

> willing to consider that all my problems were related. Finally my

> allergist admitted me to the hospital (University Hospital at the

UW

> Wisconsin) after the prednisone failed to stop my vomiting after a

> week. That time he got several different specialists together to

> work on a diagnosis. I remember the day they all came into my

room

> (14 of them including residents and med students) to " announce "

that

> they had a diagnosis. I swear to god, they were shaking hands and

> patting each other on the backs. I'm not sure they realized how

it

> appeared to me. Anyway, I do appreciate that they all worked

> together instead of the usual letter writing back and forth.

>

> After I got out of the hospital he started me in interferon to see

> if he could wean me off of medrol (prednisone) with that. The

> interferon was WAY WORSE than the medrol.

>

> My doctor also consulted with Dr. Gerald J. Gleich (another

expert)

> at the University of Utah and sent him samples of my blood. Dr.

> Gleich thought I probably had eosinophilia but wasn't sure. He

also

> sent samples to some study being done at Harvard University. Then

> he sent me up to Mayo in Rochester, MN. The doctor there told me

to

> stop the interferon, thank god. The doctor there said he didn't

> think I had eosinophilia. He also started me on this itraconazole

> nasal wash twice a day because he says there is some evidence that

> some people are violently allergic to the just the regular old

> fungus that everyone has in their sinuses. Ok. I didn't see much

> difference with that. So, not all doctors agree on what it is

that

> I have, but the vast majority of those that I've seen seem to

> believe that I do have eosinophilia.

>

> I had not been able to get below 10mg of medrol a day until I

> started the Xolair. Now I am at 5mg and even then taking a two

week

> burst (24mg medrol a day for one week, then 12mg the next week)

just

> about every two weeks. So, I'm not sure that 5mg is actually

> working for me. However, as I mentioned, I am pregnant and that

may

> be causing additional problems. So, who knows? My doctor is

still

> hopeful that I may be able to get off medrol, but he wants to wait

> to make any more changes to my medicines until after I have the

> baby.

>

> I started taking Xolair as a last ditch effort to help me lower

the

> medrol. Amazingly it is worked. Even if I can't get of the

medrol,

> I feel better than I have in two years. It has definitely

improved

> my quality of life.

>

> Yes, I was on Singulair once shortly after I got sick for the

first

> time (2 years ago). The pulmonologist I saw put me on it for

about

> a month. Several people have mentioned that it might cause this

> problem, but I don't know. I was already sick before I took it

and

> I was on it for such a short time. Did you take it?

>

> Unfortunately it sounds to me like maybe you have had more serious

> problems with your eosinophilia than I have since your heart is

> affected. As of now, I have not had any heart problems. They tell

> me that the organs that are currently affected in my body are my

> sinuses, my lungs, my gastrointestinal tract, my pancreas, and my

> skin.

>

> I saw the photos of your boys and they are absolutely adorable!

> They certainly make the struggle worthwhile, don't they?

>

> I apologize that this is such an incredibly long post. It's just

> that I am so excited to find someone else to talk to about this.

>

> Peggy

>

>

> --- In , " grw1177 " <grw1177@y...>

wrote:

> >

> >

> > Peggy,

> >

> > Congratulations - you are in more 'select' groups than you knew!

> >

> > When I first came down with severe symptoms about 5 years ago,

it

> > landed me in the hospital for 10 days while specialist after

> > specialist scratched their heads in wonderment. It was kind of

> > amusing in a perverse sort of way - I had a host of med students

> > visiting me at all hours of the day for the first three days or

> so.

> > Once they figured out that they didn't know what it was, they

> > stopped coming.

> >

> > Dr. Weller (Temple Beth Israel Hospital - Boston) is one

of

> > the few specialists in the world on this condition. He told me

> that

> > there are probably only a few hundred individuals worldwide that

> > have DIAGNOSED the condition. No knowledge of course on those

who

> > get it and just die, usually of heart failure.

> >

> > There is another group on the internet for Vasculitis that I

used

> to

> > read but don't bother with any longer. There are so many

> different

> > manifestations that the info was not relevant.

> >

> > One question - are you now or were you ever on Singulair? There

> is

> > some evidence to suggest that this is CAUSED by Singulair, while

> > others maintain Singulair just unmasks the condition as patients

> are

> > able to taper steroid dependency while taking Singulair. Just

> > curious.

> >

> > Also, what is the prognosis as far as you being able to reduce

> oral

> > steroids? As indicated, I will probably never be off them

> entirely.

> >

> > Greg