rituximab

[Pange63]

my rheumatologist has booked me in for an infusion of Rituximab. I have been on a low dose of methotrexate for a few years but the last six months I have struggled and my doctor is reluctant to upbthe methotrexate dosage because of my liver. Any tips / advice / experience to share about Rituximab?

[AgedCrone]

Best Med I have had in over 20 years! Now only need one infusion every 6+ months. When I feel I need it..I alert the rheumy nurses & they book me in.

But you will probably start on two infusions 2 weeks apart, then after 3/4 months if it is successful …your rheumy will decide how to go forward.

Good luck with it…if it suits you….it really is the most convenient treatment , just pop along to have the infusion every so often ..have the blood tests,& that’s it!

Just remember you will be hooked up to the drip for at least 4/5 hrs…so remember to wear trousers you can manage to pull down/up with one hand!

[Pange63 in reply to AgedCrone]

Thank you. That makes me feel so much better!

[Retirednhs in reply to Pange63]

I too was jiving problems with lower methotrexate but was on a maintenance dose of predisolone as well and had problems witTocilimab and transferred to Rituximab and have felt much better than l have done for a long time on this hope it works well for you

[3LittleBirds2]

Hi

I can second what AC has said! It gave me seven great years with my RA, it is so convenient too, 2 infusions, 2 weeks apart and then that was me done for a year but we are different and your Rheumatologist will decide on the frequency of course.The first cycle was very slow to kick in but further ones kicked in much quicker, sadly it is no longer working its magic for me so I've had to change Meds.

The day of the infusion I treated like a little break, take plenty of snack, your EarPods IPad or a book as it can be a long day..they would usually have to wake me up for my ob's too.

It's daunting starting on the big gun meds..I get anxious everytime I start a new one but know I need them , there are lots of positive posts about Rituxumab on here if you have a search.

Good Luck and let us know how it

[Pange63 in reply to 3LittleBirds2]

Thank you for the reassurance

[3LittleBirds2 in reply to Pange63]

You're welcome and Best wishes with Rituximab.

[janmary]

I've had 3 treatments of Rituximab - 2x2 infusions , the last treatment just one. It took a long time to work but has been by far the best, most convenient and effective of all the many medications I've had over 13 years. Take it easy on the day - and the following day (I usually feel a bit dopey the next day)

No complications so far ..................

[Pange63]

that’s another very positive comment. Thank you

[Leics]

Unfortunately Rtx infusions didn’t work for me. I only had two cycles and by the time I started to have any kind of relief it needed repeating. Just prior to my last infusion a doc informed me that he was concerned with my IgG results but my consultant had said they were ok. I so wish I had listened and not had the 2nd cycle as my immune system was knocked out and it hasn’t ever recovered. That was about 10 years ago. I thought I should forewarn new starters that this can happen. Be your own advocate and make sure you are aware of your results. Having said that I know I was very unlucky for this to happen and with any luck it will be amazing for you and give you years of relief. As I said I was unfortunate but there are risks as with any medication. Good luck I’m sure you’ll be fine and as others have said it is very convenient.

[emmajj1971]

It's been a miracle drug for me but that was after 18 months. Don't know how many doses your having but I have 2 doses 2 weeks apart every six months. So that was after 3 round of the treatment when I got the full benefits from it.

[Angels54]

Hi , I had infusions for rituximab and it didn’t work for me , however , Yeo of her women were having their third dose which they said really helped them .👍

[Pulfs]

I’ve had retuximab for last 14 yrs started with 2 infusions with 2 wks apart now only have to 1 every 6 mths. See my rheumatology nurse to book next one . It’s work really well for me . Hope you get on ok with it x

[Maritime]

I really hope that this medication works for you, unfortunately it didn’t work for me and I reacted quite badly within a couple of days. Like all the various medications used for patients with RA some suit one person only to prove ineffective to others. Good luck, may it help you.

[Grumpyoldmare]

I am with AgedCrone on this. Was completely pain free for a few months after my first 2 infusions. Next booked for March as just starting to wear off. The only drawbacks I have found are being prone to infection (managed that well with a proactive GP who acts decisively with antibiotics) and having to time routine surgery carefully to fit with infusions. I had knuckle replacements booked in for Feb 20th (couldn't be done earlier because of Sept infusion) and this was cancelled a few days before because of the junior doctors strike (bit puzzling as the strike hadn't started on20th!). As my infusion is needed in March op can't take place before August. Small price to pay for the benefits. Good luck. Hope it works well for you

[ks1966]

It’s an amazing medication. You’ll be surprised by the results, but it does need about 6-8 weeks to take full effect.If you don’t like hospital food, as most of us don’t :)) bring your own lunch. I am one of the few who has a slight reaction every time I receive the infusion. In such cases, they will stop the infusion and administer steroids and antihistamines before proceeding. Good luck 🤞

[Fj65]

I changed from tablet form to weekly self administered injections have not had stomach problems since. Injections more expensive so you may have to request trial of it first. Or check if they have ruled it out . Good luck

[AgedCrone in reply to Fj65]

You must be thinking of another drug.

We are talking about RITUXIMAB INFUSIONS.This is not given by tablets or injections & for RA is administered at 6 monthly infusions…..NOT any more frequently…but can be up to yearly if successful.

[RAat13]

I put a post up 9 months ago asking the same question.. all my replies were positive and life changing. I started mine in August and have just had my next lot, I was in bed for about 8 months last year, now I can drive again, plait my children's hair, enjoy family time again. It worked so quick for me, I couldn't recommend it enough, it's like magic. Don't get me wrong, I still have pain and if just going to town I'm tired for a few days but the life its given me back, go for it! They give you pre meds, steroid and antihistamines to try and stop reactions and closely monitor you throughout, I'd suggest after taking a few days to rest as it takes it out of you. I lost some of my hair and this time my eyebrows have fallen out but it's a small price to pay to feel better. My eyebrows were invisible anyway and always colour them lol.

All the best😊

[AgedCrone in reply to RAat13]

Ha!Ha.! I’m sure eyebrows are not affected …my hair has gone grey, but nobody knows that because to external view it is Natural Light Blonde.

However, I used to have very dark hair…but now 7 years after starting Rtx…just one eyebrow grows white! But a Khol pencil fixes that 😇

[RAat13 in reply to AgedCrone]

They are definitely affected.. mine are definitely affected, any type of hair is capable of falling out on RTX. My eyelashes, last round fell out, left me with a few and quite a bit of hair. Now the hair thats grown back is lighter and thinner and it looks grey.This time round my eyelashes again and eyebrows, hair isn't yet.

As much as I get your humour most of the time I'm unsure as to why you put Haha?? And felt a bit dismissive? Apologises if I've read it wrong.

I've always added colour to mine but without my eyebrows I don't have the "stencil" I use so it's challenging 😅

[AgedCrone in reply to RAat13]

Oh no ..I’m sorry if that is I how you read it.l was laughing at myself & my one white eyebrow! I have been lucky & not lost any other hair….but reading that your eyebrows were affected made me realise I wasn’t the only one with affected eyebrows,Maybe I should have said - Aha..?

It has been suggested to me that I could have a Tattoo..but I,’m not up for that.Have you investigated that? I don’t know anything about it…..maybe just dots for you to fill in the shape? Another suggestion was to have a fringe cut…but I can’t bare what hair I have got being all over my face.

Do Hope you find a solution.

[RAat13 in reply to AgedCrone]

Thank you for clearing it up, it always difficult to express things in the way that it's intended through text.Now I know what you mean lol!

When I was a child I was put on MTX and the same bits of hair fell out then and didn't grow back until I was pregnant with my eldest. Now on RTX the same bits (on the sides mext to my temples and above my ears) gave fallen out. Wonder if the area was already weak so more prone to fall out, its grows back but is thinner.

I've often thought about tattooing them on before they fell out but it's a bit expensive. There's other things like the fake tattoo with water or there's a powder you can dab over a stencil.

They'll grow back soon, same as my lashes. My 12 year old is really good at doing individual lashes so I get her to do those haha!

Like I said before it's a small price to pay to feel better.

Oh they do do a tint that you can put on, leave for a about 15 minutes and peel off. You have coloured brows for 3-5 days then. I might try that, maybe you too 🤔

I hate head hair all together, I had really long hair and had it cut to shoulder length in December because I couldn't brush it more. Even at shoulder length I hate it, it gets in the way all the time..

[AgedCrone in reply to RAat13]

Maybe if I were younger!

Right now I am really grateful to be able to get out of bed every morning, be able to drive & have good friends to have a laugh with.

It might give them a good laugh…if I did appear…with two matching dark brown eyebrows.,..but knowing my luck….I’d be allergic to whatever it contained 😂

[Seville7]

hello Pange63. I’m very grateful in you asking this question. I am the same position. I’m currently taking Baricitinib and Sulphazalzine. My new consultant has advised that as my bloods are positive for CCP’s I would be a good candidate for Rituximab. I cannot take Methotrexate as my liver cannot take it.

I am worried about going for the big boy drugs so early ( I’m nearly 20 months post diagnosed ). However all these comments are so positive, it would mean the world to me to have some improvement in pain and subsequent mobility.

I look forward to hearing how you get on.

BW 😊

[Pange63]

I will keep you posted!