confused

[RINochka]

hi,my child 21 was diagnosed 3 month ago with itp,she try everything,prednisolone,ivg,rituximab,and she is back on steroids.with prednisalone 50 mg her playtlets above 50.000.

she gain 20pounds with all this steroids.

she took 1 month course rituximab,any body know how fast its schould kick in?

[DAVIDJOEL]

Poor thing. I’m sure it’s tough. I’m 50 yrs old and I’m on promacta and 10 mg of pred and that keeps me at 50-60. Ritux did zero for me. U might need to get creative. Gluten free, alcohol to a min, this might also help with weight gain. Have your daughter become a student of her condition. Good luck!

[RINochka in reply to DAVIDJOEL]

thank you.she is on very strict diet.doctor want to try new medication tavalisse.do you know anything about this med

[DAVIDJOEL in reply to RINochka]

Nothig

[RINochka in reply to DAVIDJOEL]

its new

[RINochka in reply to RINochka]

good evening.anybody know if antiphosholipid syndrom comes together with itp??

[Espomom in reply to DAVIDJOEL]

My daughter's ITP came out of no where at 27 . . She tried all of the above a total nightmare also took Nplate for 4 months to increase her platlets She was healthy, always fit always ate very clean(no sugar no gluten,organic) supplements you name it.. She was so sure things would turn around. Finally Had a spleanectomy after 8 months of hell. Her counts are up. She still eats clean but is always tired.

[RINochka in reply to Espomom]

wow,what her playtlets now?and how long she was on prednisone?

[Espomom in reply to RINochka]

6months since spleanectomy count is 400,000 she gets tested again tommorow. She was on Prednisone 4 months the highest dose was 80 mg had to be weaned off. It did not do anything, she was resistant to all treatment.

[RINochka in reply to Espomom]

did she gain weight during prednisone treatment?

[Espomom in reply to RINochka]

She gained about 5 lbs and had the moon face

[christfollow]

Did she get after viral sickness?

[RINochka in reply to christfollow]

i guess,she dos not have any symptoms

[Asimkumar]

Homeopathy/Ayurveda helps.

[RINochka]

thank you

[Platelet4000]

Hw to deal wit weight issues while ln steriods??

[Kyriak51]

Hi Rinochka, I failed five days of Dexamethasone, IVIG and 4 weeks of Rituximab but refused prenisolone. Rituximab has a 50% success rate if your child had no response after fourth dose she unlikely to respond which is why she was started on prednisone with good results. As you know there is no cure at this point only remission, one member from Australia had a 10 year remission. I’m on Nplate weekly injections to maintain my platelets between 30 to 80 thousand which allows me to have a fairly active lifestyle until a cure is found. This site has an excellent education section check it out and learn as much as you can about our disease so you can participate in treatment decisions. Research is ongoing and we will find a cure Georgia

[RINochka in reply to Kyriak51]

did you hear about new medication tavalisse?my daughter was proscribe recently ,and what about fresh pomegranate juice and pappay?

[Asimkumar]

Try Homeopathy/Ayurveda..Both help.

[Asimkumar]

Can help with doctor appointment in Bangalore/India