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Post by miriam on Jun 23, 2011 16:46:41 GMT -6
Dear All,
My little one's doing better on 6MP orally. We'd a good Winter on oral cyclophosphamide but she's doing better still on 6MP - her energy's up and overall she's able for more.
Take care,
Miriam
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Post by mistiblue on Jul 31, 2011 7:32:50 GMT -6
Anyone know anything about adult onset IPH? My husband was diagnosed 6 yrs ago at age 52. He is now being evaluated for transplant. There is little info on the web about this disease. He also has secondary pulmonary fibrosis.
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Post by IPH NET on Aug 2, 2011 2:40:05 GMT -6
Anyone know anything about adult onset IPH? My husband was diagnosed 6 yrs ago at age 52. He is now being evaluated for transplant. There is little info on the web about this disease. He also has secondary pulmonary fibrosis. mistiblue, Welcome to the board. You are among friends here. We are all patients, caregivers, parents, and relatives of those with IPH. We will be glad to assist you in any way to point you in the direction of some medical resources. Please read the posts on this board, as there is a wealth of information. From what I have seen it looks about 20 percent of the cases are adult onset. The pulmonary fibrosis is a "byproduct" of this disease. Also check out the facebook IPH NET page for articles on rare diseases and COPD. There may be some assistance for you. And to the rest of our wonderful folks out there, lets all assist mistiblue in any way we can, even if it is a kind word Regards, IPH-NET
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Post by miriam on Aug 2, 2011 15:23:30 GMT -6
Dear Mistiblue,
Welcome to the site. As IPH-NET posted, pulmonary fibrosis is a consequence of haemosiderosis. What treatment has your husband had so far?
If you'd like to send a message through the internal mail system, we can give you some names/contacts that may be of help. We've been through a lot of different immunosuppressants so we're happy to share our experience. What country are you in?
Has anyone read the matrix metalloproteinases and IPH article? Thoughts on it?
Regards,
Miriam
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Post by miriam on Aug 16, 2011 0:31:04 GMT -6
Dear All,
A while back we put together a list of attendings / consultants treating patients with IPH. Unfortunately it was quite a small list at the time because there was less of us on the site. Given that there are more members now i suggest we compile another list.
As before instead please send the doctor's name and contact details (if they are agreeable by internal mail. I'm happy to compile the list and I'll also give a copy to IPH NET. Our hope if that by the clinicans having greater contact with other health care staff involved in caring for patients with IPH that this may lead to further breakthroughs.
Kind Regards,
Miriam
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Post by cooper on Aug 19, 2011 17:59:07 GMT -6
Hi All, hope everybody is well.
We are currently having a new situation and would like any feedback / thoughts. My IPH dude, Oliver (6) caught a virus 8 weeks ago. He has been on ongoing antibiotics and I am sure that it has now cleared up. The problem is that he is still having a small ongoing bleed and therefore needing 2-4 weekly transfusions and has been on 5L of 02 at home for that 8 weeks and isn't getting any better. If anything I think his breathing is getting worse (which is probably because he will be needing some more blood soon).
He hasn't had anything significant or been hospitalised for 2 years. Has anybody else had a problem similar to this and if so, what did they do about it.
I would also love to know if there is any new medications that anybody is trialling.
Any thoughts would be greatly appreciated.
Cooper
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Post by Hi Cooper on Aug 20, 2011 11:37:53 GMT -6
I am sorry that your little one is being challenged at this time. My 7 year old who was on daily steroids since diagnosis at age 1 (as she was having frequent bleeding) is no longer on daily steroids, but goes in the hospital for 3 days IV pulse dose steroids every 6 weeks. She is also now on hydroxychloroquine (Plaquenil)100mg twice daily and has been doing great. She has now started to grow (she has the height and appearance of a 4 year old) since being off of daily steroids from March 2011. In addition most of the other side effects are no longer there. She no longer looks cushioned, sleeps better, and her blood work, oxygen level etc. are better than they have been for years.
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Post by miraclemom on Aug 20, 2011 11:42:40 GMT -6
Hi Cooper: I forgot to login so that was me who just posted about my 7 year old daughter. I pray that your son overcomes this phase swiftly .
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Post by miriam on Aug 21, 2011 17:33:22 GMT -6
Hi Cooper,
Sorry to hear your news. My little one's also on azithromycin. It's being used in cystic fibrosis as an antiinflammatory so she's on it as a trial for a few years now. I'm not sure if it helped because she went on cyclophosphamide shortly after.
Will be keeping you all in our prayers.
Miriam
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Post by cooper on Aug 26, 2011 20:25:18 GMT -6
Hi All, we are going well. Still in hospital but only on 1.5 L of 02 and hopefully home in the next few days. It is thought that because he was on 100% stats for so long that his respiratory drive stopped working effectively and his c02 levels were dangerously high. This all occurred over night. His levels are now back to normal but he is still suffering some shaking of the hands as a side effect from this but hopefully that will ease off in time. He had 3 days of hydrocort IV with a few days break because of fluid overload. He is now on 3 days worth of pred and hopefully that will get him off the oxygen. All in all he is the best he has been in a while. Unfortunately sometimes they need to get worse to get better. Thanks for your well wishes. Hope everybody else is going well.
Cooper
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Post by miriam on Aug 28, 2011 12:02:51 GMT -6
Dear Cooper,
Delighted to hear your good news. Hope things keep going from strength to strength for you all.
Miriam
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Post by miraclemom on Aug 30, 2011 14:28:54 GMT -6
Hello Everyone:
We are back in hospital as of early this morning. My little fighter was running a high fever, upper respiratory issues, and breathing too fast. In addition she was hardly able to attend school this past week because she was feeling ill all the time, and very weak. Thankfully, all her labs came out great, there is no sign of bleeding. The doctors believe that she may have picked up an infection. They decided to keep her in today to start her 3 day pulse dose steroid as she was due in on Thursday for treatment. I do believe the pulse dose steroids has helped a lot. My daughter hands and bottom of her feet peels constantly. One dermatolgist was treating her for eczema which I knew it was not. Two others said it is definitely not eczema but could not come up with a good reason. Have any of you noticed skin problems with your little one?
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Post by cooper on Aug 30, 2011 17:31:35 GMT -6
Hi miraclemom, sorry you little one is sick but I'm glad there's no bleeding. My little one get's a random skin condition at the beginning of winter every year. This year he had a dermatitis looking thing on his arms and face. It cleared up after about 8 weeks but we had to stop the steroid cream we were given and used pawpaw ointment instead. A biopsy was unclear on what it was or caused by. In regards to the peeling we noticed that OLiver's feet and palms completely peeled off last week when we first got into hospital. It has never happened before and seems to have finished now. Quite strange. If you find Ny answers to that one I would love to hear them. Keep well, Cooper
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Post by miriam on Sept 3, 2011 15:29:43 GMT -6
Dear Miraclemom,
Hope your little one continues to improve. Glad he wasn't bleeding.
Take care,
M
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Post by cooper on Dec 6, 2011 16:33:53 GMT -6
Hi, I haven't posted in a while so I thought I would update you on where we are. My little one had his recent episode but has been well again now for nearly 3 months. He was on oxygen for 3 months and we have since moved house to an acre in the hills and he has been well since. We started 3 day IV pulses every 4 weeks but only had two doses and I have requested to stop. It is my believe that a bird that we were keeping inside was causing extra .in the lungs which was tipping him over the edge and keeping him on the oxygen. The steroids were useful in clearing this extra inflammation and getting him back to his "normal" levels. As steroids haven't been useful to him in the past I will not give him anymore as I am obviously worried about the side effects especially if they aren't doing anything else for him. Within a week of rehoming the bird he was off oxygen and back to school and sports. The Dr's are sceptical but I did a lot of research and am sure this was the cause. Just a thought if any of you have birds at home or around your home. Hope everybody else is going well. Merry Christmas everybody, we made it through another year and here's hoping next year is even better for everybody.
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