Discouraged Mom

[Tmp521]

Jordan is 15. She will be 16 in July. Thanks for letting me know about Gwen! Knowing what you've told me about her has given me a positive outlook on things for the first time in a while. THANK YOU!

[Tmp521]

Thank you so much for your reply Carrie. Positive stories like yours mean so much and gives me so much hope for my daughter. I am curious though...you said its almost time for another treatment. Is that how it usually works? I was under the impression she would only do 2,2 weeks apart and as long as she goes into and stays in remission, she won't have to do it again.

[Dirty Don]

Thank you so much for your reply Carrie. Positive stories like yours mean so much and gives me so much hope for my daughter. I am curious though...you said its almost time for another treatment. Is that how it usually works? I was under the impression she would only do 2,2 weeks apart and as long as she goes into and stays in remission, she won't have to do it again.

Depends on how her body reacts to the initial infusions. Ordinarily, there is a maintenance mode...that seems to be about 6 months for many people. Better to be safe than sorry mode I guess. I'm in medical remission, and maybe nearing med free remission, but docs continue to keep me on mtx to be sure...maybe another year? Hope hope!

[JennZ1196]

Hi I was just curious were in Georgia you take your daughter for treatment. You said she had some of the best doctors. I just moved last July to North Carolina and because I am on the borderline of Ga Most of my doctors are there, I cant seem to find a good rheumatologist. I go to gainesville Ga but i didnt like the center for rheumatology, and in my small town there are no doctors. So I have to go to asheville Nc or Georgia. I have Wg and had it since 2007. Its been a nightmare and still cant get proper care or treatment. If I dont get a doc soon I am just going to go to the Mayo clinic, or duke. I will keep your daughter in my prayers and thoughts. Its a rough disease and I can barley handle it, I can just imagine how hard it has to be for your daughter. She seems strong willed and thats good. If I could help with anything please let me know God Bless

[Alysia]

Hi tmp521.
welcome to the forum. Im sorry to hear about your daughter.
I had RTX two months ago for the first time. I was very afraid and I wrote here, and the wonderful people here helps me to relax. It was not so bad. I felt tired, my blood presure was very low and no more. I brought good book with me, chocolate and tea. about 6 weeks later the improvement began and is continuing, eventhough Im not yet feeling well.
I believe it will be O.K. for your daughter. she is young and strong and have an amazing mom who takes care for her.

[BrianR]

Hi There.

You may be interested in visiting weggiesunite.blogspot.ca I also sent you a private message.

[carriej22]

Thank you so much for your reply Carrie. Positive stories like yours mean so much and gives me so much hope for my daughter. I am curious though...you said its almost time for another treatment. Is that how it usually works? I was under the impression she would only do 2,2 weeks apart and as long as she goes into and stays in remission, she won't have to do it again.

No problem, all of us have been there and want to help

Each and every one of us is different and all of us have different treatments; I know some weggies who get maintenance meds of rituxan every 4 months, some only had it once; some every year... The treatments will be as different as the individuals receiving them!

I had 4 infusions one week apart initially; and we were going to do another 4 at six months but I did not need them. Recently though, I have had elevated levels in my bloodwork that's been creeping up; so that's why I will have infusions again. I take Imuran now and it seems to work; and if I didn't need the rituxan I wouldn't get it. However; the imuran doesn't seem to be keeping it completely under control and my disease is sort of "smouldering" in there and nothing seems to be kicking it clean in the arse to get rid of it; so my doctor is opting for another round of rituxan probably.

If I had of been able to stay on MTX; it may have been not needed but I had a reaction to MTX and ended up in the hospital for a week. It seems like most people take that; but I can't have it.

[pberggren1]

Jean, Dr. Falk is at UNC and is one of the top Wegs specialists around.

[JennZ1196]

Hi Tmp521, I was just curious were in Georgia you take your daughter for treatment. You said she had some of the best doctors. I just moved last July to North Carolina and because I am on the borderline of Ga Most of my doctors are there, I cant seem to find a good rheumatologist. I go to gainesville Ga but i didnt like the center for rheumatology, and in my small town there are no doctors. So I have to go to asheville Nc or Georgia. I have Wg and had it since 2007. Its been a nightmare and still cant get proper care or treatment. If I dont get a doc soon I am just going to go to the Mayo clinic, or duke. I will keep your daughter in my prayers and thoughts. Its a rough disease and I can barley handle it, I can just imagine how hard it has to be for your daughter. She seems strong willed and thats good. If I could help with anything please let me know God Bless

[pberggren1]

Dr. Falk is a Wegs specialist at UNC. He is a Nephrologist though. He will be just as good as any Rheumy. He would be the best in your area by far.