Rituximab questions...

[roobarb]

I had the first infusion yesterday & would be interested to hear other peoples experiences.

The rheumy said it can take up to 3 months to feel the benefit, is this the same for everyone?

Thankfully the side effects have been minimal so far, is there any thing I should expect further down the line?

Have you found yourself more susceptible to infections, coughs & colds etc? What is the best way of dealing with this without becoming paranoid about going out in public!

Many thanks. X

[Luppykate]

Hi , I have had a few infusions, some a few years ago, and due to my eye deteriorating, restarted, had to also have 3 500g infusions of methyl pred.the only thing I find as a side effect is breathlessness, but this goes off.It does take a while to kick in tho.Wish you well.

[roobarb in reply to Luppykate]

Thanks kate, all the best to you too. X

[rubysue]

Hi I have had 5 x 2 rituximab infusions It took a long time to kick in3 to 4 months.I didnt have any side affects.

hope you have good trouble free results the first time is a worry but I can only tell you my personal experience

please let us know how you get on.

Take care X

[roobarb in reply to rubysue]

Thank you rubysue. Do you have 2 infusion every 6 months, & do you find you are more prone to infections since being on this?

[rubysue in reply to roobarb]

Hi Roobarb Yes but one course is 1 infusion then 14 days later 2nd infusion. I have never had problems with infections but I am on penicillin for life due to splenectomy 1987. Good Luck!

[lucinda1]

Hi I used to be on retuximab, I had quite a a few sessions. I found retuximab worked for my lupus flares, the down side are the side effects, it does take a while to kickin. I also drank 60ml of alovera juice first thing in the morning to help with the side effects, as I am a forever living product distrabuter was easy for me to get hold of the juice easily..jaya

[roobarb in reply to lucinda1]

Hi Lucinda, I have a friend who is a forever living rep. The aloe vera juice did wonders for her son's eczema. Do you mind me asking what sort of side effects did you get from the ritux. Have you stopped it now & what treatment do you have instead?

[lucinda1]

Hi Roobarb, the retuximab side affects I had were headaches, temprature,nausea, stomach cramps, the worst was I developed psoriasis on scalp,legs arms n face. Despite the side effects the retuximab did work especially for my joints it also helped with a brain haemorrhage I had which was a side effect of warfrin I have stoped the retuximab some years ago. I take prednisone aspirin, amlodopin for high bp, and stelara injections every 3months also have the ALo gel all seems to be stable at mo.