Rituximab

[SammyJ]

Does anyone had Rituximab infusions to treat Lupus? If so how affective was it and have you had any side effects? Thank you

[KellyInTexas]

Yes.

Low lupus/ severe APS

Usually very little side effects.

This past week I had severe migraines for three days post infusion.

Every one is different. Usually there are minimal side effects-

[SammyJ in reply to KellyInTexas]

Thank you for everyone’s comment. Can I ask has anyone had hair thinning? Can you also explain what the issues can be on the fist infusion. I have been told you can feel unwell. Thank you

[KellyInTexas in reply to SammyJ]

Bring with you the following:

A pillow, very cozy blanket, ear buds, Long charger for iPhone, tablet, iPad, etc...hot tea...apple, snacks... and warm fuzzy socks

Wear cozy leggings - easy up and down for using rest room with an iv in place... and a loose tunic top. ( think the closest thing to pajamas without being pajamas... you want to be very comfortable. Try to wear a sports bra without wire. When you have to lay for so long the wire is uncomfortable.)

I take an anti sickness tablet from home . Just in case... ( for USA readers- anti emetic- zofran 4 mg.)

Paracetamol ( acetaminophen) will be given to you be your infusion nurse upon arrival. ( at least in the USA.) you will take this orally.

Then an IV line will be placed. An antihistamine and solumedrol steroids - probably 40mg

will be put directly in the line itself- as a “premed” .

After about 20 ( ?) min - maybe 30 the Rituximab will be injected into the saline iv solution and infused.

The rate will initially be very slow. ( drip rate per 15 seconds is measured.)

With APS , which I read you have also, it may need to be a bit slow at first, which is standard. The reactions which are most common are itchy rash- mine were inside ears - down side of face. My scalp was itching also. They stop the infusion- flush with saline and the rash stops instantly. It’s crazy how it stops so quickly when flushed. They they wait 20 min- start again. No problem.

Mainly the infusion nurse wants to make sure your throat / airway is not swelling. I was fine.

Usually a reaction ( if it happens) will occur when the drop rate is increased.

Also, this only happened on my first infusion. My subsequent infusions I did not have reactions.

Mainly, again, a slower drip rate will be needed if reactions occur. ( APS patients tend to need a little slower... But I actually did ok.)

Also you may need another paracetamol after 6 hours passes.

Keep hydrated. Very important. The evening before also. It helps the body recover.

This past time- last week - I had migraines three days after. I think I was under hydrated.

Be prepared to have your inr fluctuate strangely for a few days. Have it tested at least twice a week by vein. It takes mine two weeks to settle.

It’s not predictable. The first infusion it dropped to the 2’s so I had to bridge with heparin injections. ( unusual because a little steroids should actually bump it up- paracetamol also.)

Subsequent times it went too high!

Also this past round for these two weeks I needed to lower my warfarin dose- presumably because I have fewer aPLAntibodies? Possibly? That’s the theory and it’s holing true.

It has taken 4 sets to see an improvement.

It will take time.

[SammyJ in reply to KellyInTexas]

Wow thank you so much for your advice and tips about what to wear/ take with me. I have lost my hair in the past due to medication and I’m so scared to go through this again. Hence asking if you had experienced any hair loss. It sounds like Rituximab puts your body through a lot and I was told only 50% of patients get any relief. My consultant hopes it will help my joints and rash and ulcers and lumps I get but I’m just not sure whether to do it or not. I really am feeling mixed. One side it could really help me but in the other I could loose my hair again and feel rough for dats/weeks while it’s kicking in. To add to it all during this world crisis my husband has been living elsewhere to protect me so I am living alone with my daughter so I don’t want to feel poorly around her either. Lots to think about thank you x

[KellyInTexas in reply to SammyJ]

No hair loss- nope!

[26dre in reply to SammyJ]

Hi Sammy did you start the rituximab? How are you feeling? I also have lupus and am to start on rituximab x

[TwoH in reply to KellyInTexas]

Kelly, I had a reaction to mine today including hives all over and rapid heartbeat/high blood pressure but they controlled it with Benadryl and steroids and it calmed down. Long day but overall not a bad experience other than the reactions.

[KellyInTexas in reply to TwoH]

All over?!

🙁

And how did your inr behave?

[TwoH in reply to KellyInTexas]

Yes, all over! Back, legs, face. It wasn't pretty They did a good job calming me and getting it under control. It was a little nerve racking.

The last few days I have not felt well and today I feel like someone hit me all over. But with that being said, everything I've seen suggests that this can really be helpful and I look forward to anything that gives me my energy back.

INR is not an issue for me because he does not have me on Warfarin.

[TwoH]

Perfect timing. My first one is Wednesday so I was wondering the same thing.

[KellyInTexas in reply to TwoH]

See my response to SammyJ.

How are you? My infusions take place at Arthritis associates on Horizon Hill. ( just off Medical.) Are you getting infused at your rheumatologist’s clinic also? I hope so...

[SammyJ in reply to KellyInTexas]

I have to go into hospital to get it done

[TwoH in reply to KellyInTexas]

I will have mine done at the rheumatologist's office too. The mycophenolate and hydroxychloriquine along with the aspirin has helped. We think I have developed small vessel vasculitis now - feet burning, pin point size dots on my feet and lower calves. She wants to add this to help all of that plus my rheumatoid arthritis which is still a problem but isn't being addressed because the focus has been so much on the Lupus/APS cognitive side. Still having some superficial clots, splinter hemorrhages etc. but definite improvement on the cognitive side. Now it's more like a flare when there is an issue and not so consistently bad which has been the biggest blessing. Last MRI showed no changes, good or bad but the equivalent of severe high blood pressure damage without the severe high blood pressure. Hematologist said that this is the only way the technician could describe what they were seeing. I have tremendous pain in my legs all of the time and still have consistent livedo.

Other than that, I'm doing well But honestly, getting the cognitive side stable has been just so important to me. I'm very grateful for that.

[Kuntxd]

Very effective

[Kell12]

Yes had quite a few infusions now, no side effects for me after I ve had it, I always have a reaction to the 1st one of 2 so have to stop slow it down so it’s a very long day but after some strong antihistamines I am away again. very effective for me

[TwoH in reply to Kell12]

This is exactly what has happened to me today!

[Sarahjj87]

Rituximab worked brilliant for me and my lupus. It did take 2 lots of 2 infusions over a year to get lupus under control but haven’t needed anymore infusions since.

I always feel like I had a flu/cold the day after the infusion but apart from that no other side effects. Fingers crossed it works as well for you good luck

Sarah x

[Hidden]

Hi SammyJ,

I've had 3 doses of Rituximab to help fight the lupus and it was also to help fight off the kidney disease but unfortunately the kidney disease was far too aggressive to be fought successfully. On a plus point it helped me with the lupus and had no side effects what so ever, I was able to drive after every dose too. Always took 2 days off work for it though as a precaution. Hope this helps.

[Pickzie]

Hi Sammy. See you’ve had lots of replies and advice. Just wanted to say that I’ve had amazing improvement in my symptoms since rituximab. So glad I accepted the treatment although I was apprehensive at the thought. Wishing you well

[SammyJ in reply to Pickzie]

Thank you it’s good to hear other people’s experiences although I know everyone is different

[Bakbre]

I have been on Rituximab for 2.5 months and have had 4 with a fifth due in 2 weeks. I have no side effects apart from feeling very tired for 24 hours after it. It has worked for me very, very well.

In the U.K. we don’t have to take pillows, blankets etc with us, they are provided, as is tea, coffee, juices, water and food, ie choice of sandwiches, biscuits. These are brought round on a regular basis. All I take is a good book!

I agree go in something comfortable, as you are there for at least 6 hours for the first 2/3rds of the infusion. A fortnight later, on the last 1/3rd of the infusion it is at least 4 hours, so you need to be comfy.

Good luck, hope it works well.

[SammyJ in reply to Bakbre]

Thank you that’s super helpful. So from your experience do you think it’s a good thing to try? How has it helped you?

[KellyInTexas in reply to Bakbre]

They are provided here also, but with Covid 19 our center ( which is not in a hospital) is advising to bring your own. They are not providing during the pandemic.

( a hospital would) .

I brought my own anyway-even before the pandemic because mine from home was a bit warmer.

[Bakbre]

I have Undifferentiated Connective Tissue Disease, Rheumatoid Athritis, Small Fibre Neuropathy & Bronchieatsis and over about 5 months I was flaring very badly with RA and the UCTD. Before my first infusion my consultant had tried at least 4 lots of different medications, including methotrexate, (which made me violently ill), azathioprine (did nothing for me at all), mycophenolate, (I was stuck in the bathroom for days with that and also sickness). We then moved house & County from Yorkshire to Lincolnshire and I was put under another consultant and she put me on lefludomide. I am okay on this but it didn't do as much as she thought it would. That is when she recommended I try Rituximab. Like you I was very hesitant at first, I had heard good reports and some others that said it had made them ill and that it did nothing with the pain etc.

I spoke to my consultant (who is very good by the way) and she said that there had been some incidents of side affects, but these were very rare for them to be serious enough to take people off this drug & were few and far between. She said that overall the success rate was excellent. She said that if it affected me badly I would be taken off it immediately but she urged me to try it because of the severity of my RA.

I have never looked back. I have more energy, a hell of a lot less pain, in fact a lot of the time none at all. I am less ratty and have no mood swings (my husband used to say that when we went to bed my mood was like Saint Teresa but when I woke up it was like Hitler! - and he said he couldn't have done anything because we were asleep!

I attend the infusion clinic every 6 months for another infusion. The affects of the infusion can last longer and I have been known to go longer than 6 months without having another "top-up". Apparently it depends on how active the diseases are. Funnily enough I have an appointment on the 29th of this month for my treatment but I haven't had one since August last year. I am beginning to feel my flare ups again and am very glad that I will be getting the infusion soon.

If I was you I would give it a go, if it doesn't work you haven't lost anything and if you are anything like me (and a lot of others I have spoken to) it could be the one treatment that will help you the most.

Good luck & let me know how you go on.

[TwoH in reply to Bakbre]

This is so good to hear! Sometimes it feels like there is nothing really helpful for the energy and pain. This was very encouraging. I know that everyone is different but I was happy to read this today.

[SammyJ in reply to Bakbre]

Thanks for your help. It’s good to hear other people’s views and experiences. I think I’m at that pinto food giving it a go at the moment though I’m thinking maybe delay it until things start to get a bit more normal.