Lymph Nodes and Still's

[Guest guest]

My daughter Melani had her appt. today with her Rheum. There was a discussion

I've heard from my daughter of her weight loss, and the fact that so many lymph

nodes affected that they are doing testing for lymphoma. I want to be as

educated as I can. Has anyone had experience with the fact that Still's disease

patients are more prone to Lymphoma and also I've heard it can be a side affect

of the medications. Kineret specifically is her main course of treatment. I'm

going to try not to worry, but she is very scared and trying not to tell me too

much so that I will not worry. I think counseling for us could benefit. It's the

things that I don't know that I worry about. She has no one who she is close to

and can confide in since our family is so not supportive about illness and would

tell us it's all in our heads. So at this point, I want to make sure she feels

comfortable telling me. I will encourage her to get on a support group, however

she says she doesn't feel well enough. I'm exremely tired lately too. Fatigue is

always the way I feel after making it through the holiday's. I know you all can

relate. I have let my house go and it needs de-cluttered. I have an idea in my

head, a plan, but my body says no to the moving of the stuff. I almost turned

myself in as a Hoarder, but I think my place is just too small and I have too

much stuff. A boderline hoarder maybe : )

Peace and Love to you all,

[Guest guest]

Hi Alli,

Thanks so much for understanding and the wealth of information! It’s good to

know that there are possible other diagnosis available that it could be than

cancer. She is doing pretty well on Keneret but at times has points where all is

so sore that she is wanting to give up. She is not open to taking hydrocortisone

or an steroid because of side affects. I have been on it 10 years or more and

have plenty of side affects. I’m going to look up Lymphadema and see what it

says about it. Thanks for responding so quickly. I know what the doctor means

about going off of med for awhile and then when you add it back in, it will work

again. Thanks for the compassion too. xoxo

From: alli

Sent: Wednesday, January 11, 2012 10:31 AM

To: Stillsdisease

Subject: RE: Lymph Nodes and Still's

Hi ,

I have had Lymphadema from Actemra treatment for stills. Ever since having

that treatment, I still get swollen lymph glands under my arms and other

places very easily. I was hospitalized twice for it. I tend to have swollen

lymph glands in my throat a lot, but under my arms and other places was a

new one for me. It's painful and not fun, but I was happy it wasn't

lymphoma. I have not gone back on a biological since that, I have stayed on

methotrexate and hydro-cortisone (a form of prednisone) instead. If it gets

to a point that I have to go back on something, we will probably try

Remicade again. (it worked years ago and then stopped working - my rheumy

says that sometimes a med will work again after being off of it for a

while).

I hope everything works out for your daughter.

Hugs,

Alli

[Guest guest]

I have twin nieces that have crones which you know is an auto immune

disease also. They have such a hard time to and get so down. They have

lots of joint pain also. It is hard enough to go through this at my age

when you have at least lived some craziness but then at their age. They

seem to take it in stride though. We are all just a bunch of crazy

Germans that don't know when to quit ha ha

________________________________

From: Stillsdisease

[mailto:Stillsdisease ] On Behalf Of

Sent: Wednesday, January 11, 2012 1:37 PM

To: Stillsdisease

Subject: Re: Lymph Nodes and Still's

Oh thanks so much for offering Val that my daughter could contact you.

Moderated

RH