Diagnosed with Lupus

[RobbieM]

Recently diagnosed with Lupus in addition to RA that I have had for 5 years. Consultant wants me to go on Rituximab - has anyone tried this...good or bad experiences..

[Gnarli]

Sorry to hear your news. Not taken it myself but someone I know does. She says it's given her her life back. If nobody else comes to help, there is a Heathunlocked site for lupus you may find useful. I hope that helps

J

[RobbieM in reply to Gnarli]

Many thanks for replying. Just another drug I really don't want in my body.

[Gnarli in reply to RobbieM]

Understood

[Jackie1947]

I have Retux annually and next week i will be having first of two infusions. . It's over a three week period with one werk off in between. You are given a antihistamine orally and a bag of steroids IV before the Retux. Personlly speaking i have had no trouble at all and its a godsend. You are monitored throughout. I was scared first time but I welcome it now. Of course we are all different and you'll probably get some different views to mine. Let's just say I've had to pass on loads of medication because of side effects but not Retux. I have it for Rhuematoid Arthritis. Good luck

[RobbieM in reply to Jackie1947]

Hi Jackie. Thank you for the reply, desperately trying not to have another poison in my body as it took me 4 years to come off steroid tablets and the RA biologics are no longer working. I have had Enbrel, Cimzia, Tox etc...now Lupus to cap it all off!

[AgedCrone]

I only(!) have RA, but have been on RTX since 2016.....great success - no side effects, & most of my aches & pains are well under control.

After 20 years of RA it has been the best drug for me so far.

I hope it suits you.....sorry to hear you have Lupus now, as if you didn't have enough to put up with, With RA!

[keeta in reply to AgedCrone]

ONLY ??🤣😂😂😂

[Fifi2]

I’m on Rituximab and it has been a godsend .only side effect I’ve had is pins and needles...be careful as I broke me ankle when I fell over having pins and needles in my leg !

Good luck !

[masonman]

Hi Taji.

I was on Methotrexate for a few years but the side effects became unbearable, two years ago I had my first Rituximab infusion and experienced no side effects, and the difference it made to my life was unbelievable.

I hope it does the same for you.

best wishes MM