Pinkyciti…my dr. giveme Leucovorin 10mg 3times a week…its calcium pill…it help my hair grow back…
pinkycito said:
Wow, that’s a lovely story!!!
My sister was lossing and lossing hair everyday, so she tool the decision tu cut it all!
She shaved all her hair and then it’s growing stronger and waiting to get long
Carolyn,
This Acterma is for RA. Organ threatening Lupus doesn't seem to respond that well to Methotrexate or Plaquenil.
I've tried Methotrexate & Plaquenil in the early stages of the disease. It's gotten worse & now I need high doses of steroids & immune suppressors i.e Cellcept, Ritxuan, Cytoxin.
Carolyn said:
Have your Dr. check your IL6 and see if it's elevated. I know somebody taking Actemra (IL6 Inhibitor), with Methotrexate and Plaquenil and they are in remission now.
The patient that I know using Actemra has SLE and Vasculitis. Actemra is saving her life. She had fevers of 105 many days for two years prior to the Actemra. She tried Cellcept. Rituxan and Cytoxin are next if Actemra doesn't keep her in remission. Dr. Michet at Mayo Clinic - Rochester, MN and Dr. McCune at UofM - Ann Arbor, MI treat this patient. Both Drs. say that each and every case of Lupus is unique and treatments are unique for for each patient. This patient has a gluten allergy and has stopped eating gluten, dairy and meat. She is feeling much better with the change of diet too. Good luck! :)
The key for Actemra is if a patients IL6 is elevated. The patient that I know where it is working had an IL6 level 10x normal level.
I was on a clinical trial for Rituxan. The trial was stopped due to deaths from leukoencepalopathy. Not sure my insurance will pay for it, My Dr is requesting it off label because I failed all treatment. I was symptom free for 6 mos on this, No side effects
I have to take my Rituxan next week and after hearing about the deaths on the trials i am super scare…i dont know what to do now…i usually get it 4 times a year…omg what should i do?..
OC GAL said:
I was on a clinical trial for Rituxan. The trial was stopped due to deaths from leukoencepalopathy. Not sure my insurance will pay for it, My Dr is requesting it off label because I failed all treatment. I was symptom free for 6 mos on this, No side effects
Dunnia,
You should talk to your Dr if u are refractory for treatment then u have to weigh the benefits with the risk. All these immune suppressors & chemotherapy has side effects. Your Dr can explain what is best for u. You should always know the side effects of any medicine u take. Unless your disease is organ threatening & severe I'd re think taking it but you have to discuss this with your Rheumatologist
my lupus was really bad…i couldnt even open my hands sometimes, my knees was super swallen, my lungs, kidneys and liver was beeing attack by the lupus so thats why he got my on Rituxan and it works…but i will talt to my Dr…thanx
OC GAL said:
Dunnia,
You should talk to your Dr if u are refractory for treatment then u have to weigh the benefits with the risk. All these immune suppressors & chemotherapy has side effects. Your Dr can explain what is best for u. You should always know the side effects of any medicine u take. Unless your disease is organ threatening & severe I’d re think taking it but you have to discuss this with your Rheumatologist