My Story....

[Ursula Bennett]

Good Day to everyone.

I live in South Africa in a town called Pietermaritzburg. I would love to find out all I can about Wegners and the latest medications, treatments, etc.

I am in the process of trying to foster a little boy who has Wegners. I met this little boy whilst my son was admitted in the same hospital in the beginning of this year and just fell in love with this beautiful child. I can't mention his name or any other details which I obviously have to keep confidential at this stage but he has had Wegners for about two years now and has spent months in hospital. He has two big ulcers in his feet and his fingers are going to same way. His sinisus have been effected, he only weighs 14kg and is nearly 8 years old.
He is in a wheelchair and he was in hospital for 7 months then the doctors said hes in remission and he could go home, he went home for 6 weeks but when he came back he was worse and the disease has returned. The pain this child is in is unbelievable and very very sad. The doctors are taking bloods today and are going to try a new medication. The doctor did mentions the meds he was on before had bad side effects.
I will try get the name of the new medication later today.
Please send me any information you have, especially on children with Wegners...I have just joined the group and I am going to start reading through the posts. I am so happy that I found this group to join. I thought we were alone so many people don't even know this disease exits.
Have an awesome day.
Wishing you all love & Light
Ursula

[drz]

Check the resources on the Vasculitis foundation and elsewhere on this site to find the information you seek. The other members in SA might be able to help you find the best treatment resources in your area.

[annekat]

Welcome to the forum. This sounds like an unusual situation, and bless you for taking this little boy under your wing. You can check our member list for people in SA, under Community, which could take a lot of scrolling, or access the Weggie Forum members map highlighted in blue at top of page to see who has added their name in your country. Here is the link to the VF specialists and consultants list: VF Medical Consultants , and be sure to check the New Specialists list under Support on that page; there might even be one from SA, though I don't know. The little guy will be in my thoughts and prayers.

[vdub]

Do they have a positive diagnosis of GPA? Actually, you are never positive, but have they ruled out other possibilities? What drugs do they have him on? It seems unusual that he would be in hospital that long, even for such a young person. Unless, of course, they caught the disease late and it has done some major damage. If you can give some more details as to symptoms, drugs, issues while in hospital, etc., we might be able to add some thoughts on how to proceed.

On the forum map I see 5 users in SA; 3 in Johannesburg and two further south. I recall that Keishara was fairly active for a while.

[mrtmeo]

Sometimes ulcers are not responsive to treatment and Drs went back to the old medicine.
They would use 300mg potassium iodide 3 times per day and the ulcers would resolve.
Here is one clinical case, but there are others.
Severe livedo vasculitis treated with potassiu... [Rheumatol Int. 2003] - PubMed - NCBI

My theory is that the ulcers maybe MRSA.
For Weg's, Rituximab seems to be the favorite.

[kieshara]

welcome to the site sorry for me being not active... but that happens if you dont have a computer... anyways
i love to hear from you... ,my mom has wegeners... and its a horrible thing... ugh....

hope to hear from you soon!!