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Last Login: 6/26/2008 9:31:26 PM
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| My daughter is on alpha-interferon 2b (Intron A).
Brittany has been on 3 million units per day for almost 4 months. She has had few side effects, but I see no convincing evidence that it is doing anything. The doctor says it will take at least 6 months before we see evidence it's working and she's determined to go the distance. It doesn't seem to be hurting anything so I'm willing to continue.
We would like to know if anyone else has tried this drug and what are/were your experiences with it. Did it work? What dosage? How long before there was evidence the drug was working (or not)? How long did you take it and why did you stop?
Lisa |
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Last Login: 8/28/2008 11:54:48 AM
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| Lisa,
My 6 years old daughter had a diagnosis of Gorham's disease. She took a treatment (monthly IV Zometa, daily SQ INTRON A, calcium and vitamin-D) for 13 months. She started INTRON A at 1 million units per day. Five months later, her liver function was deteriorated so bad (ALT=354, AST=201) that the doctor reduced her dosage to 0.6 million units per day. Before the treatment, her bones were very weak and there was liquid in her lung, cysts in her spleen, and skin lensions on her legs and one arm. We didn't see any improvement until after 7 months' treatment. At that time, she had "almost complete resolution of peural effusions". Now her lung is totally normal, and her osseous structure is stable. I think the Zometa improved my daughter's bone density and the interferon removed the liquid in her lung. But the cysts in her spleen remains, and the skin lensions in her legs and arm are still growing. We are looking for other medicine for that. |
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Last Login: 5/30/2008 12:35:36 PM
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| Hi,
My daughter also took the same interferon your daughter is currently taking, She received the shot once a day 3mils per shot. She was able to take the medication for approximately 8 to 9 months. She was just turned 11 years old. During this time the doctors watched her vey carefully, took blood samples and many x-rays and MRIs to see if there were any new "hot spots" and if the old ones disappeared. She did not have any new "hot spots" during the treatment and has not had any so far. The treatment was finished approximatley 5 years ago. During the time of treatment we, her family decided (not the doctors perscription) to give her everything we could to keep her healthy. She drank Ensure once to twice a day, she got a lot of sleep, took extra calcium and vitamins. She was able to handle the interferon treatments until the last couple of months where her immune system could not fight off the colds and flus as easily and she was missing a lot of school. The doctors then decided for her to stop the treatment and watch. As a parent you know your daughter the best. We knew are daughter is very determined and strong and therefore could handle the treatments, we had to try and we are glad we did. I hope that helps.
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Last Login: 10/26/2008 6:04:21 PM
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| My 13 y/o daughter was diagnosed with Gorham's in Feb 2008. Our physician at Children's Hospital Los Angeles began her on 3million units Interferon alpha 2b and a monthly IV of palmidronate (Aredia). We sent her case to the Vascular Anomalies Center at Boston Children's Hospital which reviews cases from all over the world at no charge. They did recommend cutting her interferon dose in half (she now receives 1.5 million units) as they did not see a significant difference or greater progression of the disease when they reduced the interferon from 3.0 to 1.5 with the patients they are following who are on Interferon.
Our understanding is that a bone survey will be done 6 months to a year after beginning the Interferon to see if the disease process has progressed or remained stable. If she continues to tolerate the interferon, they would continue it as a long term medication. What information have you been given on length of treatment with this drug? The decreased dosage may be something to discuss with your physician. Hope this is helpful. |
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Last Login: 6/8/2008 1:43:45 PM
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| My son Ryan is about to start Interferon treatment this next week. He will also have a 6 month course of treatment and in addition he will have a monthly IV infusion of Zometa. It was encouraging for me to hear that Brittany has not had any major side effects. Thanks for sharing this!
Amy |
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Last Login: 6/23/2008 6:00:13 AM
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| Hello,
My daughter is 7 and started taking intronA injuections for Gorhams almost 2 years ago. She also have minimal side affects. She was also started on Fosamax, and we give her Viactive for the calcium, and other important vitimins. From her last bone scans we so no change better or worse in her lesions. Best wishes on the treatment.
Kristen
Proud Mom of a strong little girl living with Gorham's Disease |
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Last Login: 12/28/2008 12:44:52 AM
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| | Our 8 year old daughter Alyssa has just started on a daily dose of Interferon, and a once monthly dose of Zometa for Gorham's Disease. She has been taking them for about 3 weeks now and her side effects have been better. She did get pretty sick for the first week or so and now it's mostly just being tired alot or some muscle pain. It's still early in the process but they have also told us it would be atleast 6 mos. or so until we will know if it's helping or not. Any advice would be greatly appreciated. |
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