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Hi Mary Ann!

I just started on Micalcin. So, that is great news to hear it has really helped you!!! I can no longer take fossamax due to my loss of kidney function, and I find the nose spray to be really easy to use, and it seems to help my sinus pain as well! I've been told it is less effective, but has a lot side effects as well

So, thanks for the good news! I'm staying with it.

Love Louise
Eric & Mary Ann Holman <holman@...

Hey everyone,
Seeing Diane's post reminded me of something I keep forgetting to post. Those that are on/have been on Pred. or just have developed osteoporosis check your MDs about a drug called MiaCalcin. It is a nasal spray medication specifically for osteoporosis (boy I hate spelling that word!!). I was started on it about 10-11 years ago for severe bone pain I was having in my left knee/lower thigh. An MRI showed a small amt. of osteoporosis (we had been fearing aseptic necrosis). I had been taking 10mg. Valium, Tylenol w/codeine & neither were touching the pain--well after 45 minutes or so, but it was HORRIBLE pain! When my internist saw the MRI report, he decided to start me on MiaCalcin because one of it's other things it does is work on bone pain. After taking all the heavy tranquilizers & pain pills I thought my MD had lost it, prescribing something I sprayed up my nose once a day. Yeah, right. Well, it worked like gangbusters. Three days or less and the pain was
gone!! Never to return again. I have stayed on it because if I skip it for very many days, the pain starts coming back. No thanks.
Anyway, my MDs think the reason my bone strength has stayed so good even w/the Pred., is due to MiaCalcin. When they did the last bone scan, there was no "discernible" signs of osteoporosis.
Something to check into if you don't use it & have osteoporosis.
God bless,
Mary Ann, OR
Hi Group:

My name is Diane and I live on Long Island, New York. I lived in Queens, NY until I was 7 yrs. old then moved to Long Island where I have been since then. I am 42 year old Caucasian and have been married to a wonderful man for a little over 9 years. I do not have any children but have a cat, her name is Midnight.

Like so many others, I believe my battle with Sarcoid started many years ago. I have had many health issues through my teen years into my young adult life. I was diagnosed with uvetis when I was 17 which was treated with steroids. I believe back then they had no idea of immune disorders and really had no explanation why I came down with uvetis. When I was 35, in December of 1995, I was diagnosed with End Stage Renal Disease. It happened very quickly and I was very frightened, not knowing what has happening to me. I was rushed to the hospital with a creatine of 27 and put on dialysis immediately. My renal specialist said I was about 2 days away from death. I was advised against a renal biopsy by my renal doctor so I have no idea what took my kidneys but whatever it was it shut them down completely in 2 weeks. In January, 2001 I had pneumonia and pleurisy; just about 1 year after having that, I was having pain in my chest and difficulty breathing. I went to a lung
specialist who found my breathing was a 65% of capacity and the test began. I went for an open lung biopsy in September, 2002 and that's when they found Sarcoid. I am now on and off prednisone and have 2 different inhalers, Advair and Combivent. My lung specialist thinks the Sarcoid is doing damage to my bronchial area and may be setting off asthmatic attacks. I also have the horrible sinus pain, the fatigue, the pain in my bones, all the problems we deal with each day. They have now found that I have osteoporosis, just another problem. The dialysis and prednisone are not helping that situation at all. My renal specialist isn't sure we can treat the osteoporosis, the medication is not recommended for dialysis patients.

Well, that's my story in a nut shell. I pray everyone is feeling as good as they can.

Love,

Diane

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Hey everyone,
Seeing Diane's post reminded me of something I keep forgetting to post. Those that are on/have been on Pred. or just have developed osteoporosis check your MDs about a drug called MiaCalcin. It is a nasal spray medication specifically for osteoporosis (boy I hate spelling that word!!). I was started on it about 10-11 years ago for severe bone pain I was having in my left knee/lower thigh. An MRI showed a small amt. of osteoporosis (we had been fearing aseptic necrosis). I had been taking 10mg. Valium, Tylenol w/codeine & neither were touching the pain--well after 45 minutes or so, but it was HORRIBLE pain! When my internist saw the MRI report, he decided to start me on MiaCalcin because one of it's other things it does is work on bone pain. After taking all the heavy tranquilizers & pain pills I thought my MD had lost it, prescribing something I sprayed up my nose once a day. Yeah, right. Well, it worked like gangbusters. Three days or less and the pain was gone!!
Never to return again. I have stayed on it because if I skip it for very many days, the pain starts coming back. No thanks.
Anyway, my MDs think the reason my bone strength has stayed so good even w/the Pred., is due to MiaCalcin. When they did the last bone scan, there was no "discernible" signs of osteoporosis.
Something to check into if you don't use it & have osteoporosis.
God bless,
Mary Ann, OR
Hi Group:

My name is Diane and I live on Long Island, New York. I lived in Queens, NY until I was 7 yrs. old then moved to Long Island where I have been since then. I am 42 year old Caucasian and have been married to a wonderful man for a little over 9 years. I do not have any children but have a cat, her name is Midnight.

Like so many others, I believe my battle with Sarcoid started many years ago. I have had many health issues through my teen years into my young adult life. I was diagnosed with uvetis when I was 17 which was treated with steroids. I believe back then they had no idea of immune disorders and really had no explanation why I came down with uvetis. When I was 35, in December of 1995, I was diagnosed with End Stage Renal Disease. It happened very quickly and I was very frightened, not knowing what has happening to me. I was rushed to the hospital with a creatine of 27 and put on dialysis immediately. My renal specialist said I was about 2 days away from death. I was advised against a renal biopsy by my renal doctor so I have no idea what took my kidneys but whatever it was it shut them down completely in 2 weeks. In January, 2001 I had pneumonia and pleurisy; just about 1 year after having that, I was having pain in my chest and difficulty breathing. I went to a lung
specialist who found my breathing was a 65% of capacity and the test began. I went for an open lung biopsy in September, 2002 and that's when they found Sarcoid. I am now on and off prednisone and have 2 different inhalers, Advair and Combivent. My lung specialist thinks the Sarcoid is doing damage to my bronchial area and may be setting off asthmatic attacks. I also have the horrible sinus pain, the fatigue, the pain in my bones, all the problems we deal with each day. They have now found that I have osteoporosis, just another problem. The dialysis and prednisone are not helping that situation at all. My renal specialist isn't sure we can treat the osteoporosis, the medication is not recommended for dialysis patients.

Well, that's my story in a nut shell. I pray everyone is feeling as good as they can.

Love,

Diane

To unsubscribe from this group, send an email to:

Hi Group:

My name is Diane and I live on Long Island, New York. I lived in Queens, NY until I was 7 yrs. old then moved to Long Island where I have been since then. I am 42 year old Caucasian and have been married to a wonderful man for a little over 9 years. I do not have any children but have a cat, her name is Midnight.

Like so many others, I believe my battle with Sarcoid started many years ago. I have had many health issues through my teen years into my young adult life. I was diagnosed with uvetis when I was 17 which was treated with steroids. I believe back then they had no idea of immune disorders and really had no explanation why I came down with uvetis. When I was 35, in December of 1995, I was diagnosed with End Stage Renal Disease. It happened very quickly and I was very frightened, not knowing what has happening to me. I was rushed to the hospital with a creatine of 27 and put on dialysis immediately. My renal specialist said I was about 2 days away from death. I was advised against a renal biopsy by my renal doctor so I have no idea what took my kidneys but whatever it was it shut them down completely in 2 weeks. In January, 2001 I had pneumonia and pleurisy; just about 1 year after having that, I was having pain in my chest and difficulty breathing. I went to a lung
specialist who found my breathing was a 65% of capacity and the test began. I went for an open lung biopsy in September, 2002 and that's when they found Sarcoid. I am now on and off prednisone and have 2 different inhalers, Advair and Combivent. My lung specialist thinks the Sarcoid is doing damage to my bronchial area and may be setting off asthmatic attacks. I also have the horrible sinus pain, the fatigue, the pain in my bones, all the problems we deal with each day. They have now found that I have osteoporosis, just another problem. The dialysis and prednisone are not helping that situation at all. My renal specialist isn't sure we can treat the osteoporosis, the medication is not recommended for dialysis patients.

Well, that's my story in a nut shell. I pray everyone is feeling as good as they can.

Love,

Diane

Bill,

Thanks so much for taking the time to write me about your experiences with this in regard to Joey. It helped a lot to feel like there were others this had happened to, and also your explanation about the different sorts of blood.

We did go see Dr. Mallory, our pulmonologist at Tx. Children's. He had Becky get a chest x-ray, examined her, listened to her breathe, asked questions, etc. He said her x-ray looked different from the last time, but that he couldn't see anything definite on it that was wrong. His belief is that given that she has a respiratory infection, combined with being on Coumadin which thins her blood, all the coughing and her having PH and he says the blood vessels in lungs with high pressure in them are more fragile than those of normal people.

He said that he could have her admitted to the hospital, but that she didn't seem to be in breathing distress even though she is breathing with more difficulty than usual, and the bleeding had slowed down some at the time we were there (and is still that way now). So he said given that he knew Becky and I both well, and knew that I would call if anything worsened, that he was willing to send her home, and have her continue to take the antibiotic, and he prescribed such Vicodin which he said would relieve her chest pain and also has the side effect of suppressing coughs so she won't cough as much and he is taking her off Coumadin temporarily. He said for me to call him on Monday and let him know how she is doing. And that if she gets worse I am to call the pulmonologist on call at night if needed.

It is strange that Becky has had this wretched disease since she was 6 and is now 17 and almost 18, and yet we've never dealt with this issue of coughing up blood until now. Perhaps because Becky doesn't seem prone to get maladies that she coughs with very often.

Pam
Bill Nelson <dgccandwrr@...

Pam,
Joey coughed or vomited up a lot of blood in his
time with us, and there are several serious distinctions
that need to be made. The first is is this old blood or
new blood. old blood is dark rust brownish, which Jennifer
refers to as coffee grounds. Old blood is less worrisome,
as it is old and the source may already be healed up .
Bright red blood is new blood, and more worrisome.
The next variable is where is the blood coming from.
Joey had a lot of nosebleeds, to the point where it wasn't
considered serious until all of his clothes and half of
mine were in the washing machine. sometimes the blood would
come out the nose, and other times it would go down the
throat, to be coughed up or thrown up later. with a sore
throat there is also the possibility of bleeding in the
throat.
a
more serious concern is a pulmonary bleed, where the
little sacks where the oxygen is transferred into the blood
in the lungs pop from the high blood pressure.
So you have a lot of possibilities concerning the
source, and seriousness of this blood being coughed up, it
may become another frightening thing that you learn to live
with one you know where it is coming from, but it is
something which may be serious, and should be evaluated by
a doctor. So it is a good thing Becky has a
pulmonologist who can see her asap, cause when you go to
the emergency room with something like this, nobody there
will know anything about PH. I hope this turns out to be
one of those things that is more of a scare than a
serious set of new problems. Seeing the Pulmonologist is the
right thing to do. Jennifer has just got home from a
long day @ clinicals, so this letter has been run by an
editor, and is a little better than my normal ramblings.
Please keep us posted , Yall will be in our prayers.
Bill Nelson, Jennifer's Husband Joey's dad

Happy Anniversary to you!

Happy Anniversay to you!

Happy Anniversary Ray and Liz!

Happy Anniversary to you!

(and many more)

Carol

Pam,
Joey coughed or vomited up a lot of blood in his
time with us, and there are several serious distinctions
that need to be made. The first is is this old blood or
new blood. old blood is dark rust brownish, which Jennifer
refers to as coffee grounds. Old blood is less worrisome,
as it is old and the source may already be healed up .
Bright red blood is new blood, and more worrisome.
The next variable is where is the blood coming from.
Joey had a lot of nosebleeds, to the point where it wasn't
considered serious until all of his clothes and half of
mine were in the washing machine. sometimes the blood would
come out the nose, and other times it would go down the
throat, to be coughed up or thrown up later. with a sore
throat there is also the possibility of bleeding in the
throat.
a
more serious concern is a pulmonary bleed, where the
little sacks where the oxygen is transferred into the blood
in the lungs pop from the high blood pressure.
So you have a lot of possibilities concerning the
source, and seriousness of this blood being coughed up, it
may become another frightening thing that you learn to live
with one you know where it is coming from, but it is
something which may be serious, and should be evaluated by
a doctor. So it is a good thing Becky has a
pulmonologist who can see her asap, cause when you go to
the emergency room with something like this, nobody there
will know anything about PH. I hope this turns out to be
one of those things that is more of a scare than a
serious set of new problems. Seeing the Pulmonologist is the
right thing to do. Jennifer has just got home from a
long day @ clinicals, so this letter has been run by an
editor, and is a little better than my normal ramblings.
Please keep us posted , Yall will be in our prayers.
Bill Nelson, Jennifer's Husband Joey's dad

Hi Sooey,

This is a great idea, especially for all the newbies. I don't mind sharing this information, although I might make it a bit more confusing. Hope not! Here goes:

I'm femaile

I am 33 years old

I am caucasian

I have only lived in Calfornia and England
I was diagnosed with Sarcoidosis (after initial diagnoses of JRA) when I was 6 - although I had the Erythema nodosum when I was 3-
I had fevers, non-productive bone marrow, enlarged spleen and liver, uvietis and minor arthritis. Sarcoidosis became the diagnoses when I had non-caseating granulomas biopsied from an exploratory surgery on my abdomen. I have had a skin biopsy as well.

Later, it showed up in my kidneys

I have never had it in my lungs

I also have intense sinus pain (I'm with ya Ray) most of my life, as well as my brother

I have had "sarcoid meninigitis" - does that mean it affected my CNS?

The last 15 years, Sarcoidosis has been incredibly managable for me. Most of the problems have "gone away". However, I was diagnosed with another kidney ailment in October that "they" aren't sure is related.

Love Louise

I am a female.
I am 53 (yikes) years old.
I was 53 when I recieved my diagnosis.
My sarc is in my lungs & lymph nodes.
I am caucasian.
I live in the north east, U.S....CT
I did not go to the Dr. with symptoms of sarc, it was discovered
through abdominal x-rays, in which, they could see the bottom of my
lungs.
I don't know anyone else with sarc...only YOU!
I hope this is not too personal for some of you. This Sarcoidosis
stuff is so new to me and I find that I have many questions.
I hope where you are, it is sunny, warm and wonderful...it's a little
cold and wet here in CT.
My best to you,
Sooey

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Hi Pam,

I am so sorry to hear that Becky is experiencing coughing up blood or hemoptysis. Noel had this for quite a number of years.....it started when she was around 14 years old. I think it is great that they are evaluating her right away because then you will know if it is something to do with her infection.

I won't try to go into my bogus medical explanation of how I understand it because Jennifer could do more here.

First there are some things to remember with hemoptysis and the first is......don't get Becky upset and keep her as calm as you can during the episode. Noel had codine for and at the first sign of coughing she would take it. Some things changed with Noel as she aged and that's why the hemoptysis started......it was something bad.......but Noel still lived on for a number of years....

i am telling you........calm is the way to go esp. when the hemoptysis starts....

we got so we would not take Noel to the hospital unless it was very hard because that would upset her more to have it driven home that she was getting worse or doing worse at that moment. I also took a dropper and dyed water red and dropped it on a piece of toilet paper and let Noel see how it spread out......when liquid hits something and spreads it always looks like sooo much more and that can really make you nervous..........so reinforcing once in awhile with the visual.......so you can tell her just because it looks like a lot doesn't mean it is.....tell Becky to make her self calm and relax and then it can stop because not moving around and stuff or coughing will help it stop...

GET A SCRIPT FOR CODIENE TODAY AND DO NOT....I REPEAT....DO NOT LEAVE THAT DOCTORS OFFICE WITHOUT IT....unless Becky is allergic to it or there is a contraindication.....it is the thing that worked for Noel....as her condition progressed I had even given it too her more than prescribed...the doc knew this and I never saw any problems with breathing or anything......

If becky starts coughing hard before you get it....take her to the er and have them give her one.....

Her chest will hurt with hemoptysis and Noel used to get wheezy also. You will get so you will notice subtle signs before anything like this happens.

this time it could have been aggravated by the underlying condition.....Noel also had eisenmenger and in that condition you are always making new collateral circulation and those fresh new vessels wouldn't be able to take the enormus pressures and they would burst.

but I got so i would know when it was going to happen....maybe a bit more than usual cyanosis and water retention.....at first i couldn't.....but this can get more manageable as time goes on.

I told you I was so sorry because I think this is one of the harder aspects of eisenmenger and ph to deal with. it frightened Noel a lot for quite awhile and when it happened she was very concerned about dying.

Be strong and know someone loves you in NY and wishes she was there to let you play with her new pup because she is soo delightful and cute I named her Bliss. I wish I was there for real to give you a big hug.......I hope you have someone strong who can......I know it is hard on all of your family members......

write if you need to..

both my older daughters have email and and they are both great girls...

if any of your other children ever need to speak to another sibling who has been through hemoptysis plus what seems like almost everything else......I am sure they would be happy to answer their questions or speak to them about their fears........snail mail would also be okay....just an offer....don't mean to offend....but my kids never had anyone but us to speak too because hemoptysis can be kind of rare......hang in girl and i will be saying some prayers for all of you....me

Hi Sarc Gang!
I hope that you all had a nice and restful Labor Day. Now it's back
to school, work and into the Fall! Oh My.
I've been wondering about all of 'us'. It's interesting to read about
where our families are from, background, etc., but I'm wondering
about some other stuff also. We all have at least one HUGE 'thing' in
common with eachother...Sarcoidosis. But do we have any other common
threads as they relate to Sarcoid? Like, how old are we now and how
old were we when we first learned we had Sarcoid? How many of us
are male and how many of us are female? What part of the world do we
live in, etc. Since I am new to this group, I don't know if this info
has already been given, sorry if it has, but I think it would be
interesting to compare notes. I'll start.
I am a female.
I am 53 (yikes) years old.
I was 53 when I recieved my diagnosis.
My sarc is in my lungs & lymph nodes.
I am caucasian.
I live in the north east, U.S....CT
I did not go to the Dr. with symptoms of sarc, it was discovered
through abdominal x-rays, in which, they could see the bottom of my
lungs.
I don't know anyone else with sarc...only YOU!
I hope this is not too personal for some of you. This Sarcoidosis
stuff is so new to me and I find that I have many questions.
I hope where you are, it is sunny, warm and wonderful...it's a little
cold and wet here in CT.
My best to you,
Sooey

hi joanie
what a wonderful story of the family circle.
/|
maggie & ____/ |
lucky chance ____/o^ |\
at warp works studio \------/\ \
\______ | |
mageez@... \ \
|
I believe that friends are quiet angels who lift us to our feet when
our wings have trouble remembering how to fly.
author unknown