Rheumatoid Arthritis, Auto-Immune disorders

[2ez]

Hi all,

My 16yr daughter has Mixed Connective Tissue Disease......primary Sjrogen's Disease.


Just wondering if anyone here has an auto-immune condition.. would like to hear how you are working out and coping.

Approx, 3yrs ago, she competed Nationally in gymnastics. her workouts were 6 days per week, 4 hrs/day each.

She hasn't competed in just under 2yrs. We have done 2 rounds of Chemo (Rituxan and Cytoxan) thus far to suppress her overactive immune system. She is in a much better place today. Her Prednisone has been reduced from 60-70mg....down to 5-7.5mg daily.

She has dropped the gymnastics to 3 days a week (just started back in December) and she is now trying out for the track team. (she's a soldier and will not let this disorder hinder her)..

However, as parents, my wife and I have to watch that she doesn't do to much.


Just trying to give a lil background and wondering if anyone is..or know someone that has a similar disorder.


Thanks in advance

 

[dangerouscurves]

Just a bump for you , no personal experience here

But congrats to her for soldiering on, and yay for the positive advancements in her condition.

 

[SHINE]

Amazing and it takes one heck of a lot of heart & soul,Thanks for sharing this story, Wish I could give some help but don't know much about that.

 

[YAMAHA147]

I do not know much about this either but I do want to say that you are doing a terrific job and giving great support! Thats whats most needed to forge ahead. I wish you the best

 

[Snake]

its great that her pred has been decreased so drastically...that drug has nasty sides eventually..

they are beginning to use Cymbalta in small doses for all kinds of pain, and it is a wonderful anti-depressant in larger doses..very safe and side free, generally, though not sure about her age group...is is something to investigate anyway..

what a heartwarmimg, poignant story..please keep us informed and if you need someone to chat to in both good and bad times, I've seen my share of tough to take health situations in people very dear to me, and endured a few myself...don't hesitate to shoot me a message...

 

[2ez]

We are due for another round of Chemo to suppresss her Immune system in the next month. the same Rituxan and Cytoxan will be infused. its a 2wk process, we go into the hospital from Tues - Fri......take a week break...and then go back in for another Infusion of the same two drugs.

She has been in a more stable state, but the last 2wks, she has not been herself. Long story made shorter, we took her to the ER and they gave her fluids. She says she feels better, but not totally. Earlier in the year...say Feb - Mar we had a similar issue.


So my question today is about Hydration. I have read about Coconut water, but just wondering what are some options other than the GAtorades and Bottled Water can we have available for her....

Is the Coconut water hype or good.


on a lighter note.....she has been back at gymnastics since July. Competing for her High School now...and have qualified to compete in the States Competition for the Vault and Beam thus far.

High School season is about 2mos, and when this is done she wants to get back into the Club Gymnastics which is outside the school and were one has to travel nationally.

As you can imagine, I think this is to much, but her Rheumatologist is saying let's allow her to try.