Please can i get some feedback on your experience with rituxan for rheumatoid arthritis?

[Shresworld]

Rituxan side effects remission

[KittyJ]

If you put rituximab into the search box and filter for NRAS then all the posts about it will come up 😊

[Shresworld in reply to KittyJ]

Thank you I have done that most of the post are old so I kind of wanted a fresh opinion.

[AgedCrone]

Been on it for 6 years….been diagnosed 20+ years….I have experienced the best results with no side effects…I now have just a single infusion every 6/7 months.I have never had any infection caused by it,& hope if you are about to start taking it that you do as well.

[Shresworld in reply to AgedCrone]

Thank you that is very encouraging 😊

[ks1966]

Rituximab is nothing short of amazing. Like the fellow member said once or twice a year and also there’s no hassle of daily pills or injections. It’s really really good. Best of luck

[Shresworld in reply to ks1966]

Thank you for your reply that's what i want to hear what about infection or the virus any problems? That is my main concern because although retired I still work part-time.

[ks1966 in reply to Shresworld]

Just try and take precautions. We’re susceptible to them either way. I had a. Infection last September and took antibiotics which cleared it. I think it’s a matter if weighing your options. RA can do serious damage to joints etc as you know.

[Shresworld in reply to ks1966]

Oh yes i definitely can't live like this anymore but thank you for your reply and i will ve carefully but the nurse really scared me telling me not to go walmart that was the only after care information i got??

[ks1966 in reply to Shresworld]

She’s being silly :)) I wear a mask everywhere but this is because of the Covid situation

[Shresworld in reply to ks1966]

If it wasn't covid would you still wear a mask? I work part-time and i have to be around people so i was wondering at what times in the process am i most vulnerable? She does have me scared 😱

[ks1966 in reply to Shresworld]

Personally I wouldn't. People on Rituximab still have a well functioning immune system like the T cells in our bodies and they are very capable in fighting off infections. I suggest you take your vaccines a month before treatment. And by the way the B cells that are depleted by Rituximab gradually start to repopulate in blood streams. It’s not permanent. That’s why the treatment is once or twice annually.

[Shresworld in reply to ks1966]

Interesting I wish i could of talked to my doctor because i had no idea about the t cells so even though it depletes our b cells we still have t cells to fight things off. Well thank you for that information i can breath i do have an appointment with the doctor on the 13th when i go for my 2nd one i have had no vaccines nor did the doctor tell me to get one before i had the infusion so it's a bit late now i suspect i guess i do need to be worried then because i still work part-time as I'm only semi retired and need to work part-time 😅 thank you so much for your reply I'm going to really let my doctor have a piece of my mind !!

[AgedCrone in reply to Shresworld]

I haven’t even had a cold since I have been on Rtx…..I have never had a chest infection & I think if you do get those sort of infections they don’t go away on Rtx…..so I do suggest you speak to your rheumatologist about a date when you can get your Covid 19 vaccinations. My doctor prioritised my infusion over the vaccination ..but I had the jabs after about a month.I am retired & older than you ….& as my doc says…..I can get you vaccinated …but there is no pill for your age! He said it with humour…..& he’s right - we oldies do need to take good care.

But don’t let it take over your life…take all the relevant precautions…..but get on with living a good life .

[Shresworld in reply to AgedCrone]

That sounds like great advice Thank you 😊

[Neonkittie17 in reply to Shresworld]

Hi Shresworld, Personally, I wound wear a mask. (Even if your B cells return at 6 months routinely, Rtx’s effects could be in your system for a lot longer it you stopped Rtx to change med etc.. So for people to say Rtx is gone after 6 months isn’t entirely true, but it’s thought safe to give at a minimum of 6 months. A senior immunologist told me that recently, re my own Rtx situation, re Rtx lowering my immunoglobulins.)

Re mask wearing ... It’s what you know too about your own health issues .. do you have comorbodities making you more vulnerable, for instance? It’s different for many people re B cell repopulation on Rtx as you can repopulate B cells at 6 months or go 12, or longer, so it’s not always the same, regular length of time. That’s why the rheumy wants to do B cell and Immunoglobulin blood tests before and after Rtx infusion(s). Some people on Rtx have had their immunoglobulins very depleted from early on too so blood tests are vital to monitor. My B cells don’t repopulate for 12 months so Rtx has done so fantastically well to put Rtx in abeyance and I always have <5 CRP, but no doubt about it, it can leave you more vulnerable if you’ve no B cells.

Plasma-B cells are needed to make sufficient antibodies (IgG & IgM)

for example. You need both Bs & Ts. It is good if your B cells repopulate at a regular time of 6 months as you can plan vaccines more easily for instance. Six months is just the average. One size doesn’t fit all. I’d say to anyone on high level immunosuppression such as Rtx to ask your rheumy/nurse what your level or risk is, assessing all other meds and health. They know you more than anyone does re your RA and as I said, everyone is a bit different how they are with their RA and other factors involved. Good luck. x

[Shresworld in reply to Neonkittie17]

Thank you very a lot of good information. So you only have to have it every year, That's great I really don't have any other conditions except for Ra but it's pretty severe how long did it take for you to tell it was working?

[Neonkittie17 in reply to Shresworld]

I went 14 months first time then 8 then longer till it was an average of 11-12 months. I could tell by 6-7 weeks it was working as I felt less fatigued and generally much better in myself. By 8-10 weeks it was working even better, but sometimes it takes a little longer. I hope it works great for you and do ask your rheumy re your vaccine timing after Rtx. Very important.

[Shresworld in reply to Neonkittie17]

Thank you 😊 i can't believe I've had for 5 years and right when i find a possible great medication we have to be in a pandemic!!

[Neonkittie17 in reply to Shresworld]

Well I wouldn’t want to give the nurse a piece of your mind if she was trying to be helpful in a strange way albeit, as you’ll likely see her each infusion! As I I said in my other post to you, I’d ask your rheumy what they feel is your risk. Hear it from the horse’s mouth, as the saying goes. Good luck.

[Shresworld in reply to Neonkittie17]

Yeah my rummy isn't very informative to say the least the medical care here in Arizona isn't the best they never told me anything before the infusion or even ask me about vaccines so i guess i should of had vaccines before the infusion! Well a little late now after the infusion!

[Neonkittie17 in reply to Shresworld]

They should have told you re leaving a gap between Rtx infusion and vaccines. It’s happened here in the U.K. too that some rheumy teams haven’t informed patients enough on this.

[Shresworld in reply to Neonkittie17]

Yes so now I'm worried because it's hard for me me to be on lock down.

[Neonkittie17 in reply to Shresworld]

I hope you can speak to the rheumy for advice and continue to be careful with the mask and distancing as far as you are able.

[Shresworld in reply to Neonkittie17]

Yes I will my appointment with her is on the 13th same day as my 2nd infusion. I have a lot of questions. Thank you for your reply

[Neonkittie17 in reply to Shresworld]

No problem. 💗 Yes you need your questions answering by the rheumy. Hope all goes well. 🙏🏻

[ks1966]

Best of luck. But strongly suggest you take you vaccines before the infusion.

[Shresworld in reply to ks1966]

But I just had my infusion 3 days ago!

[ks1966]

Oh. Good luck then. Try and wear a mask always.