I have been on Rituxan for over 2yrs and it helps me alot!!!.. Anyone else have use Rituxan infusions before?..
I had Riituxan on a clinical trial it did put me in remission but trial was stopped because some Lupus pt's got a
virus causing leukoencepalopathy which isn't curable ,a degeneration of brain cells. I'd ask your Dr about this
Oh ok…thanx…im kinda scare ti continue to take this but its the only thing working…but I will ask my Dr…thanx
OC GAL said:
I had Riituxan on a clinical trial it did put me in remission but trial was stopped because some Lupus pt’s got a
virus causing leukoencepalopathy which isn’t curable ,a degeneration of brain cells. I’d ask your Dr about this
i have not heard about this one...i will have to ask my rheumy about it
Ok thanx janice…
janice said:
i have not heard about this one…i will have to ask my rheumy about it
They are also finding this problem with Benlysta. Fortunately it is very rare complication
So do u girls think i need to stop taking this Rituxan infusions?..
poobie said:
They are also finding this problem with Benlysta. Fortunately it is very rare complication
My Dr won't use Benlysta cause she said it has a very high death rate. She won;t risk it with me. She is insisting I stay with the chemo and hits of steroids.
I think you should pay attention to your doctor - all drugs have side effects and risks- which is greater- the risk from the drug or the risk from the disease. The risk of leukoencephalopathy is miniscule with these drugs- the ravages of the autoimmune diseases is rampant however
Thank you very much!!!..thats some good info…thanx to all of u lovely people…
poobie said:
I think you should pay attention to your doctor - all drugs have side effects and risks- which is greater- the risk from the drug or the risk from the disease. The risk of leukoencephalopathy is miniscule with these drugs- the ravages of the autoimmune diseases is rampant however
My Dr. has talked about using Methotrexate. Is it along the same line of meds? He said it was a low dose chemo drug that was successful in the treatment of lupus. Has anyone used it?
Della…yes i have use methotrexate but it didnt work for me, it made 75% of my hair fell out, but remember everybody its different and it might work for you…my friend uses methotrexate and it works for her, so good luck and i hope it works…god bless…
Della said:
My Dr. has talked about using Methotrexate. Is it along the same line of meds? He said it was a low dose chemo drug that was successful in the treatment of lupus. Has anyone used it?
I have been on Rituxan for 1 year, and it has made a HUGE difference! very thankful for it... but can't afford it :(
No, I haven't been on this, but I will mention this to my Rheumy. Do you have any side-effects....I know that we are all different and may or may not share side-effects, I was just asking...if you care to share...Thank you for sharing this info w/us....
Moondance…i beleive you can get Rituxan for free if your doctor go thru the manufacturer… Its an application you have to summit and it takes a couple of months but once they approve it you are good for however long you need it…so ask your doctor maybe he can help…good luck!!!..
moondance said:
I have been on Rituxan for 1 year, and it has made a HUGE difference! very thankful for it… but can’t afford it
Hi angel312… Rituxan has help me so much…the only side effects that i have got is a minor fever, little tired, little weight gain, and it is very expensive but some insurances covered…but if you can goggle rituxan and lupus and you can read the side effects and the risks…
Angel312 said:
No, I haven’t been on this, but I will mention this to my Rheumy. Do you have any side-effects…I know that we are all different and may or may not share side-effects, I was just asking…if you care to share…Thank you for sharing this info w/us…
Methotrexate was born like a chemo, but taken in high doses.
It is prescribed for some kind of Lupus, the low activities one and in low doses.
When your Lupus can not respond to common treatments, you should take this chemo (Rituxan).
Rituxan is like to take a lot of pills or inyections of Metho.
And both have some side effect like hair loss, headache, etc...
And if you have Lupus, and you need to control it with o without chemo, I think one of the less important thing is the hair loss.
That is the cost your body has to pay for your health, it's a cost-benefits thing.
Hi pinkycito…what you are saying its true…and i agree in the hair loss…when i was lossing my hair u cry but i decide to cut it really short and donated to the cancer kids…and now god bless me with some new hair…its super long and pretty…
pinkycito said:
Methotrexate was born like a chemo, but taken in high doses.
It is prescribed for some kind of Lupus, the low activities one and in low doses.When your Lupus can not respond to common treatments, you should take this chemo (Rituxan).
Rituxan is like to take a lot of pills or inyections of Metho.And both have some side effect like hair loss, headache, etc…
And if you have Lupus, and you need to control it with o without chemo, I think one of the less important thing is the hair loss.
That is the cost your body has to pay for your health, it’s a cost-benefits thing.
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 :)
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.