RITUXIMAB INFUSION FOR LUPUS AND SJOGRENS

[Haired]

Hi all,

Just wondering if anyone found Rituximab good for symptoms of Lupus and skin Lupus And Sjogrens. I had 2 Infusions last month. I was taken off Methotexrate after 9 months due to side effects. Went on Imuran for 7 weeks but unfortunately ended up in hospital with liver damage.

I was taken off medications including Mepacrine which really helped Sjogrens . Although brain fog, breathlessness has improved ( I felt Methotexrate increases symptons) my skin lupus symptoms/ flare up is getting worse and Sjogrens symptoms. I realise it can take up to 3 months for Rituximab to take effect but would love to hear from anyone onRituximab.

Thank you

M

[Fisherman01]

Hi I have been on imuran for four years and it has done great by me with very few side effects it keeps me going for me me it has been a wonder drug .Wishing you well I know sjogrens can be very bad.

[Haired in reply to Fisherman01]

Thank you for your reply.

[Jennibob in reply to Haired]

I have previously been on methotrexate orally, for about 3 years and felt like it didn't really do anything. They thought maybe I wasn't absorbing it as I should. So they changed me to injections for methotrexate but I ended up with liquid diarrhoea and rather unwell. So they decided to take me of them.

Next they tried rituxamib, I have had two infusions over 6hrs. 6 weeks apart. I feel the best I have ever felt in over 15years of been diagnosed. I have been on that from October last year. I am slightly fatigued but mobility wise and joints- I feel much more flexible, energetic etc It has defiantly been positive for me.

[Haired in reply to Jennibob]

Hi, Thank you for your reply. I was with my rheumatologist last week and he said the Rituximab is a very slow release so would only be starting to kick in. The fatigue is so much better, breathlessness and brain fog. Memory is still a hit and miss.

My main problem is skin rash. The burning has eased but rash can be very angry and taking weeks to calm down. Not sure if marks will ever clear. Skin is very tender in places and photosensitive. But overall feeling much better than I have in a few years now.

I am living outside Dublin so only had my first Astrazeneca vaccine 2 weeks ago 12/14 weeks until second one.

Was wondering what direction have you been given re contact and visiting shops etc. ?

Hope your doing ok.

Many thanks.