Hello all, We are leaving today for NIH.? It is our full week visit and we will not head home until Friday.? I have not seen that any of you will be there, but...
I was here a while ago to share what I found and it helped Shannon and Ashleigh and now I wanted to share some NEWS to follow up with my earlier postings here....
Hi there,just to update anyone who replied to me about my little boy Jack.I spoke to my doctor here in Ireland about going to The NIH and Great Ormond St,so...
That is great news, even phone contact may help and the 2 doctors discussing him will be great, maybe they can go to him if possible if it links with any trips...
Hi Karen, Alex had the rash the migrated, sometimes even looking like muckle wells. But whenever he had a temperature the rash would completely vanish this...
Hi Kate, Thanks so much for your mail, maybe we are injecting Charlie incorrectly as his rash has never gone on the anakinra, his dose is only 2.5ml when we...
Hi Kate and Karen...its strange the way drugs are more readily available in The US and how the doses vary but I'd prefer Jack to stay on as low a dose as...
Hi all, Tom's rash disappeared the day after we started injections and hasn't reappeared since.(2 years+). He had it on average 5 days out of 7 prior to that....
I'm only trying to help because it worked for me, my wife, Shannon and Ashleigh and her other 4 kids. Have you guys tried benadryl for the rash? What happened?...
Hi Aisling, Trust me when I say that the NIH is a wonderful place. Dr Goldbach-Mansky is very caring The first week on the study you will feel that you don't...
Hi Karen, Alex takes 0.56ml in the morning and 0.45ml in the evening. There is 100mg in 0.67mls which adds up to about 150mg daily. What is the dosage of...
Aisling I understand your concerns, (this is my opinion) When Alex was younger he had one of many LP's. The CSF, which was drawn off, contained a gram of...
Jorma, I think we have gone here before. As a nurse I can appreciater your call to good health habits such as avoiding chemicals and artificial colorings in...
As I have said before please leave, the families of this group alone you are not welcome and as Michelle has said, you have no clue to what is going on with...
Hi everyone, it is too bad that people try to insult us with posts like lordandlady, we all have gone through the paces of elimination as if we were foolish...
Dear Friends, and welcome to the new femalies here from Holland ;-) Our Daughter Eline [recently 15 years] is on Anakinra over more than 5 years Within days...
Sorry it was late last night charlie is only having 0.25ml, not 2.5ml ! silly me ! so much less that the others appear to be having, maybe we can see what...
Hi Kate,I am in total agreement with asking this person to leave the site as he e-mailed me at my own address telling me to take Jack off certain foods,I...
Aisling I am so sorry that you received an email from this crazy woman. She entered our group a few months ago and upset many members we all gave her a piece...
We have the same fears over malignancies, but as Kate has said, what else do you do? We had NO help with this disease until the NIH and Anakinra. Steriods...
Hi All, Gerard, It sound like Tom & Eline have had similar results.. I know Eline's story was so encouraging to me when we were considering starting the...
Hi Louise, Thanks for your support and yes I will keep the site open but it does worry me that nutters can come in and put unrest with our families. Why don't...
Dear All, I have not had time to respond much lately because all of us on The NOMID Alliance Board (and anyone else interested can join us too-we have room!)...
Dear All, Sorry for all the typos in the past post-I was holding our little baby and trying to get things done! For the quotes, please send them to this group,...
"When I was sick I couldn't move any part of my body without hurting. Since I take the medicine I can do sports and everything like a normal person. It's...
Michelle, Thanks so much for the quote-we will use it, and thatnks for all that you do. I hope that it is a great party! I will send the pdf of the brochure...
Jack aged 2 and a half,what his mum says "Jack spent two years in hospital and for months at least once in every 48 hours his room was cleared for the...
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