Rituximab

[poodlegal]

This drug has been suggested to me today anybody on it ? Thoughts

Course I googled it 😳

[Rach459]

Hi poodlegal, ive had rituximab a few times and dont have any problems at all with it. I last had it in November 2016 as i have lupus nephritis and my blood results are looking better i go back the hospital in 2 weeks to see if they're still improving. What are your worries about? I too was very wary of having it xx

[poodlegal in reply to Rach459]

I'm been treated for nephritis 2 nd bout the mmf is causing low white cells the lupus causes low white cells I've been like this for 12 years was always told it was ok now they said if u have this drug (injection) it doesn't interfere with cell counts

I've read the list of warnings and it says has been known to cause death!! That's the biggest fear

I'm just so fed up I remember all these feelings and worries when all this started 5 years ago

Then u go into remission and u think wow I've got off lightly well if u can call kidney damage light!! Then I get a huge flare and back on my kidneys

I'm just so scared as have aps too and only now after two miscarriages are they taking it serious

Feel like I'm back at sqAure one

I'm 36 I fear how much can the body take

then I feel selfish because children are ill and people are at war

Just going through a really down time at the moment xxxx

[Rach459 in reply to poodlegal]

Awwww its awful illness dont think people realise how complicated it is. And its not selfish at all to feel like that. Yes i done exactly the same thing and googled it! I can honestly say i had no problems at all whilst having it, i had an infusion of it for 6 hours 2 weeks apart and also without steroids as i have phsycotic reaction to steroids. The only thing it does is make you feel tired whilst your having it because of the piriton they give you aswell. But it seems to be helping. I really think you will be fine they have to tell you the side effects to cover themselves. Im 31 and had lupus for 14 years. Let us know how you get on. Sending you lots of hugs 🤗🤗🤗🤗 xxx

[poodlegal]

Thank u rach479

I'm going next month when we will talk more about it as they want to control the aps first

I read some of your posts you want a baby ...me too but it just seems impossible now

I really wish u all the luck for the future

Hugs back 🤗🤗 xx

[notoverthehill]

I have had several infusions with Rituximab and the real benefit to me has been I no longer have burning pain in my joints that is till my latest infusion, this time I had it days before I had full blown flu which became pneumonia and it's making it it longer to be effective

jean

[poodlegal in reply to notoverthehill]

I think that's the thing with these drugs as in any drugs ur body gets use to them

Hope u feeling better soon xx

[Cas70]

I went to a talk at Brighton Univ Hospital Med School. There has been a blind trial of this drug and it showed NO BENEFIT from this drug. Look up Prof Kevin Davies - Rheumatologist - Brighton & Sussex Med School. Or look it up on the Brit Sjogren Syndrome Assoc site. I wouldn't put myself thru it they are still guinea pigging it.

[Paul_Howard Partner LUPUS UK in reply to Cas70]

Hi Cas70 ,

Whilst some trials have shown no benefit compared to standard treatment and placebo, other trials and case studies have shown a significant benefit. The understanding of the use of this treatment is improving and it is showing that certain sub-groups of patients may be more likely to benefit and that isn't demonstrated in the randomised trials. You can read a bit more about this at medpagetoday.com/rheumatolo...

[poodlegal]

Thanks for the info cas70 x