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Hello.

My 12 year old daughter has been diagnosed with Pulmonary hemosiderosis. She's receiving blood and therapy based on corticosteroids and immuno-supressants. Unfortunately, prognosis of this rare condition is not good. Is there anyone with similar problem who could recommend me best clinics and treatments for my daughter?

I'd appreciate any info on this.

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Hi Becky

 

My daughter was diagnosed with Pulmonary Haemosiderosis at 14, she is now 16.  She had a very tough year the 1st year - with medication of prednisolone 40 mg per day, hydroxychloroquine 200mg per day and azuthromycin 500 mg.  Eventually in October last year she was weaned from steroids and remained ok until just before Christmas when she coughed up some blood.  We started the prednisolone again for 2½ weeks weaning her daily down to none again.  Her 4 month visit to the Royal Brompton last Friday showed the best lung function yet.  So far so good. 

 

Are you resident in the UK? If so which hospital are you seeing?

 

Please get in touch - as today I have found a support group.  I am waiting for the link to be sent to me as there is a discussion forum on the internet.

 

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becky wrote:

Hello.


My 12 year old daughter has been diagnosed with Pulmonary hemosiderosis. She's receiving blood and therapy based on corticosteroids and immuno-supressants. Unfortunately, prognosis of this rare condition is not good. Is there anyone with similar problem who could recommend me best clinics and treatments for my daughter?

I'd appreciate any info on this.


Hello Becky,
I have had IPH from the age of 6 and am now 50!! never thought i would get this far. have had many years of very poor health, but have rsponded well to high dose prednisalone and Azathioprine. Do you live in the UK?
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Hi Viv,
There are so few of us in the UK with this condition and i have found it hard to find a support network other than in the USA. I am in contact with one other in the UK who's daughter has the condition.
I live in N Wales and have fantastic medical support, both GP and Consultant.
Where in the UK are you.
Please get in touch. I am now 50!! and never thought i would reach this age. There is hope out there for us and we can lead a normal life with good medical support and medication. I am on long term steroids and 100md dayly of Azathioprine.
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hello ! pls i need to talk to you. My daughter is having this condition from age of 3 , now she is almost 7. need just talk to you pls. Helen
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iph wrote:

hello ! pls i need to talk to you. My daughter is having this condition from age of 3 , now she is almost 7. need just talk to you pls. Helen


Hi Helen, Just read your message. I have been on Prednisalone and Azathioprine for 30 years and am very lucky to be doing well on in with not many side effects. I am having a lot of trouble getting into this site for some reason. If you would like to talk more about this send me a message and will see if i can give you my email address privately. Lots of options for treatment so dont give up hope. Nice to hear from you, Monica
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hi Monica, my daughter just been in the hospital for 3 days for the methilprednisolone to stop the bleeding, and as much as i understant that is the only option to save the life , as much i hate the side effect what is does to her ( moon face ) . she is pretty little girl , but the prednisolone destroys that. Have you tried Cell cept. Did the prednisolone stoped your growth ( hight wise )  ***this post is edited by moderator *** *** private e-mails not allowed***Please read our Terms of Use

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Hi Helen, Will email you asap. From age of 6 was on only prednisolone high dosage with bleeds very often. At about 23 was put on Azathioprine and found a big improvement in my condition. Am 5ft 2" so not too much problem with hight. Face was very puffy on high dosage steroid. Sadly prednisolone is the standard medication to save a life with this problem. I can understand how you must feel.

Have not heard of cell cept, what is it? Hope she gets over this bleed soon, am sure she is a strong little girl and will fight it. Must be awful for you to watch her go through it. Thinking of you. Mail you tomorrow night.

 

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thank you so much for your response. we are out of the hospital. 3 days of methilprednisolone IV.. pls contact me , so i can talk to you ..

 

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joy wrote:

 

becky wrote:

Hello.

 
My 12 year old daughter has been diagnosed with Pulmonary hemosiderosis. She's receiving blood and therapy based on corticosteroids and immuno-supressants. Unfortunately, prognosis of this rare condition is not good. Is there anyone with similar problem who could recommend me best clinics and treatments for my daughter?
 
I'd appreciate any info on this.

 

Hello Becky, I have had IPH from the age of 6 and am now 50!! never thought i would get this far. have had many years of very poor health, but have rsponded well to high dose prednisalone and Azathioprine. Do you live in the UK?

 

Hi Helen, So pleased to hear your little girl is home again. Have tried to contact u but it keeps bouncing back for some reason.

 

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Monica smith. Please get in touch with me. I would love to talk to you regarding your diagnosis.

Many thanks
Kirsty
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