It seems to be worse these days, even though I'm sleeping a bit better than have been. But while rituximab has been great for me, the irregularity of getting the infusions every 8 months or so makes life more difficult than if I was on a regular self injection. I'm interested in other peoples experience. I'm not suggesting that rituximab is responsible for the brain fog, I'm aware that its connected to my inflammatory disease, although the ups and downs associated with the irregular infusions (at present every 8 months) must affect levels of inflammation.
Any thoughts ? And has anyone moved seamlessly from rituximab to a similar medication over which they have more control?
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cathie
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Hi Cathie, I moved from Rtx to Abatacept (Orencia) in Sept 2022. After 4 excellent years of Rtx and no adverse reactions I had 4 years of my Igs depleting to hypogamma and 28 lots of bronchitis/pneumonia/antibiotics. Eight years in total on Rtx. The issue around vaccine efficacy (my flu and pneumonia vaccines were also blunted by Rtx) made me also want to reconsider a move to another biologic as I’d a persistent, fluctuating low IgG (<6) and permanently low igM and if the igG keeps doing that, the rheumy is not supposed to continue to approve you for Rtx. My final single Rtx (I had gone to single infusion the last 2 years of being on it and only needed it once a year) was April 2021.
We discussed that when we got nearer the year mark following the April 21 infusion we’d look at starting Abatacept. As my B cells don’t repopulate fast I asked if they would monitor them more closely every couple of months and wait till I felt Rtx was losing its efficacy and my B cells were returning, Eighteen months later Rtx was still working and B cells hadn’t showed enough but my rheumy was worried I’d go downhill before they started me on Abatacept injections/click pens. So I had a seamless transition and no flaring or problems with it. Started it early September 2022. Can’t say how long it took to work as I wasn’t flaring as I said, I was told it’s 6-8 weeks on average, sometimes sooner for Abatacept to kick in.
I have to say I was thinking … here we go back to another weekly injection and chasing another medical delivery company. (I already have one for Mtx.) The Abatacept injections are painless and easy. You do get used to the freedom that Rtx infusions give you once done, and nothing more to do there for several months. . I always put any fogginess down to my Fentanyl transdermal patch. Changing biologic meds, especially from such a high level one like Rtx was daunting at first as I thought I’d not find anything to compete, but my rheumy assured me Abatacept was successful for so many of her patients who’d been on Rtx and had proved problematic/were persistently hypogamma and couldn’t continue on it.
Can you talk with your nurse or rheumy as if your blood results are good and you aren’t having any other issues and your RA is being kept under control, then Rtx could still be right for you? Apols for the length but wanted to give and much info to try help.
You’re welcome. Just wanted you to have some info from someone who had been on Rtx for 8 years and changed seemingly successfully, Let us know how it goes, and yes, you have time to think on the next 8 months before another Rtx what you want to do and research some other meds. Also time before next week to think of any questions you can ask your nurse whilst you’re there having your infusion. You aren’t guaranteed that the brain fog will stop once you stop Rtx. I hope you can find a way round that. 🙏
I have been on Rituximab for approx 8 years and even though the first couple of infusions were slow to act , I had a great response to this drug. At my last couple of reviews they felt that it wasn't do enough to control my disease so they have changed me to Sarilumab still waiting to start it (long story) it may be a coincidence but my issue started to flare when I was changed to a Biosimilar Truxima but my Rheumatologist has said unlikely.
I will miss the convenience of Rituxumab for sure, 2 infusions then done until I need it again and no stopping and starting if I got infections, I've injected before with Enbrel which I found no problem but between the two I would say I would prefer the once and done method!
I too have awful brain fog at the moment and are putting it down to my flare and these oral steroids, I had an appointment yesterday and said the Ritux must have been working as I never needed oral steroids while on it but then starting my new meds has been delayed. They will consider dusting me back on it if the Sariulmab has no effect.
Best wishes in getting to a decision what will work best for you x
It can be nerve racking when you have had success for so long now on such an effective med and RA free, and I felt that too. Research re a new med and talking to people on here who’d been through it and my nurse and consultant helped me so much. (They might say to you .. if it ain’t broke, don’t try fix it … kind of reply to you.) 🩷
I've made the switch from RTX to RoActemra (Tocilizumab) via Adalimumab (which was useless!) and some prednisolone in the gaps on the advice from my Rheumy as my immune system had been floored by the RTX. I was concerned about making the change as Rituximab and its biosimilars (Truxima and Rixathon) had worked so well for me. My last RTX infusion was in May 2022.
So since January 2023 I have been self-injecting weekly (epi-pen) and have no trouble at all getting my deliveries (Healthnet do it not Sciencus thank goodness). The Tocilizumab is working very well for me and although I have had to miss a few doses (when on antibiotics for a chest infection and immediately before and after my ankle op) it seems to resume working again without problems (so far!).
I was always able to tell when I needed my next RTX infusion as I would start a flare; brain fog and inflammation in my body became very noticeable, often several weeks before it showed up in by blood test results. I usually needed to have the infusions every 6 months although I managed to go 9 months once, which was hard and not through my choice!
So overall I'm glad I made the switch and now have the ability to stop doses for a week or two if necessary with not much of a flare as a result.
That sounds very much like me so i'm making a note of whats worked for you. I also feel the early morning symptoms initially so am able to sound the alarm to the rheumatologist. He responds very quickly but its still a delay, which sets me back and I never quite get back to where I was before. But ritux has worked so wel lfor me so I hesitate to ask for a change - although having a bit more control over my meds would be good. How ofen do you see the consultant now you're on Tocilizumab? Cx
I haven't "seen" him for nearly two years! I have had a couple of telephone consultations though. As I'm now "stable" on Tocilizumab (whatever that means!) I've been put on the 12-month PIFU pathway since September 2023. I can request an appointment if I feel it necessary/have a flare otherwise I think I may be offered an appointment in September 2024, although probably telephone again. I do get 3-monthly blood tests done for the hospital so they are monitoring me (I hope!).
Are you finding it hard to get transfusions in under 8 months and feel they are overdue? That may be the problem that's causing the brain fog and feeling unsteady. I had to make a big fuss to get mine 6-monthly especially latterly. It could be a problem if there's over reliance by your team on just looking at blood test results - that's the problem I had - and it seemed that I was noticing the inflammation effects in my body before it was reflected in rising CRP levels.
I wrote to rheumy posted on a Monday, got appointment on the Friday of same week. Have infusion next week - so it took 3 weeks to arrange. I don’t think that’s bad. But it depends on me to press alarm bell and I can sited longer than usual
Wow that’s good service! Perhaps it’s part of what seems to be the new modus operandum: they will assume everything is fine unless you contact them to say otherwise (they call it PIFU)! It’s probably the only way they can cope with increased demand and staff shortages.
thanks. Yes I think that's what we have in Edinburgh. When we meet he does a sort of stream of consciousness at me - he thinks this, but on the other hand- what do you think? I like it and it works for me. I worry that this time I may have waited a bit long to press the alarm bell, but at least the system is working well at present. I'm keeping notes of how I feel (am apparently atypical). Last time I could have illustrated the state of my work room before and after the infusion! Had a complete clear out afterwards, although initially that may have been the effect of the steroids they give you.
Good morning darling so glad to see you posting. I get brain fog related to my diseases and it is dreadful isn't it. I can't relate to biologicals as i no longer take them as every time i do i get a chest infection, so i am relying on what i am on already.xxxxx
I feel exactly the opposite….I find being able to get a blood test & then speak to my rheumatologist to discuss if I should now have an infusion is really liberating.
Are you just called for a blood test /infusion without any discussion? I was on the Rtx double 6 monthly infusions for about 5 years, then went down to single infusions & my rheumatologist suggested I got a blood test when I felt the Rtx was wearing off….so now I have blood test forms…decide when to get a test which my rheumy reviews & now I only need an infusion 9/12 monthly.
Tbh I found most DMards gave me some brain fog….& it’s no worse on Rtx….I do think it’s just part of the disease, and as you say…..not necessarily caused by medication …..however those people who keep getting infections on Rtx would probably disagree with me.
Why don’t you have a word with you rheumy nurse….are you taking Methotrexate with the Rtx? I’m not as rheumy thought it inadvisable,if you are, maybe discuss that?
Unless I develop unacceptable side effects I wouldn’t want to change from Rtx .I hope you sort things before your next infusion is due.
I don’t think we can all get in contact with our Rheumatologist or “our nurse” (that is if we have one specifically allocated to a patient - most of us don’t I think) as quickly as you AC. If I ring my hospital’s helpline I get a recorded message stating it may take up to 8 days to get a response!
There you go…you communicated & it got a result! I think a lot of people might hesitate to make contact….but a short description of a problem can bring much faster results than waiting for an appointment.
Hi Cathy have to agree we are really lucky in Scotland for swift reply, from rheumy I'm in bonny Dundee ,and she's making arrangements for me to try Rtx infusions .Was on bariticinib for 4 yrs,bad inflammation in hands,brain fog too,but it's balance problems that's a big problem,am aware you mentioned unsteadiness is a side effect,although have had bilateral hips knee replaced and ankle fusions,may be main culprit,anyway good to hear you're veiw Cathy will.let you know how I get on🤔
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