Hi all, I have been getting ritixumab for the past 7/8 years and it’s been a godsend, but in order to qualify you need to provide a certain level of difficulty each and every time, the first 3or4 times I was able to wrangle the criteria with the nurse and I settled into a yearly infusion which ticked all of the boxes but the nurses changed so often it was difficult to maintain and a year was gradually extending, the last two occasions have proved to be much more difficult and the time to qualify has stretched to 18 months, the first 18 month stint led to severe flares allowing my hand joints to deform and I had to return to prednisolone for a few months to settle everything down, I was due my last infusion a year on in November 2020 but denied the treatment because of covid and was given anti inflammatories, I slowly began to deteriorate and after complaining to the hospital I was told I could qualify after having both vaccinations and that my flare needed to be controlled with the anti inflammatories and paracetamol as prednisolone was not advised near getting vaccinated, so April 2nd vaccine done May back on pred. June two infusions ritixumab done 15th and 29th but still need to hold off the flares with pred. But where do I go from here, the criteria to qualify is ridiculous if I’m well I don’t qualify but they tell you to your face that most people get it every 6 months or so, if you’re one of those people can you enlighten me, I understand the covid delay but the time before that? The helpline has turned into a, we’ll get back to you once we spoken to the consultant go between service, am I the only person that doesn’t understand why I need to be in pain to qualify or is it really about qualifying for funding.
Steve
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It's worrying that you're having to hold off flares with prednisolone but maybe you're flaring because your consultant made you wait so very long for your Rituximab and it's not working fully for you yet after a long gap. He's obviously taking a very cautious approach but from what you say you have suffered irreversible damage whilst not being allowed to have Rituximab. What were your CRP and ESR levels in the blood tests you had before your last infusions? What do you mean by having to qualify for Rituximab? And are there also other issues you have not mentioned, such as the prevalence of Covid in your area, the work you do etc?
I think those of us who were already on that drug have mainly continued to have our infusions over the past 18 months although the interval between them may have lengthened. My last infusion was a single pulse in early May after waiting 9 months for it but I was happy to try that as my CRP was not very high and I agreed that strategy with the consultant. I had asked him whether he wanted to try to get me off Rituximab because of the high risk of serious illness with Covid but he did not, particularly as my RA is sero positive, I failed on the first four drugs we tried and we've only got it under control fairly recently and I've only just managed to get off the prednisolone.
If you're not satisfied with your consultant's approach then perhaps you should ask for a second opinion/change of consultant. Meanwhile I hope you will soon feel the benefit of the Rituximab and be able to reduce the Prednisolone.
Thanks for your reply, in November 2020 I was a year on and told the consultant I was beginning to experience problems especially with my shoulders, I was working in a supermarket due to redundancy in the aircraft industry, he instantly said he had lost a colleague to covid and that there’s no way he can allow me to put myself at risk he told me to remove the idea from my thoughts saying we were in the middle of a pandemic no no no, he offered an injection in each shoulder, I declined saying it’s not a localised issue, he then prescribed anti inflammatories. Finally I got a new job in January where I was now being tested for covid daily, I had a phone consultation after a blood test as back up in February so hoped for a reprieve.The first thing he said to me was, I’ve told you an infusion is off the table quite abruptly and recommend doubling the dose of anti inflammatories.
I was flabbergasted and made a complaint to the hospital and was almost immediately replied to by the consultant saying he would allow another infusion pending two vaccines of which I’ve already explained.
I have always been told when my condition is sero or in remission to come back in 3 months and that in order to qualify I need to have over fifteen joints or so inflamed or active, they physically count and circle the joints on a chart and require a high score from 0 to 10 to qualify, I always say eight or nine and they usually allow it but of late it’s getting harder and harder, I’m sure it’s due to funding but that’s always denied.
The new job was in the film industry but the contract finished in mid May at which time I was barely able to walk and I haven’t worked since then due to my hands a knees being so weak, luckily my second infusion yesterday with the 100ml pred. Has given me some relief but I’ve got to maintain the pred daily to see me through, it has taken 4or5 weeks in the past to start getting results from the infusion but then I’m normal for months or as I’ve said up to roughly a year.
I'm so sorry to hear this. Your letter has made me angry on your behalf, I'm really struggling to believe this has happened.
I'm on RTX too. I understood that once you qualified for a biologic you continued with treatment, unless ( very rarely) you were considered to be in remission.
RTX is prescribed as an ongoing treatment, in particular 'cycles', in my case I usually manage about a year before I have another infusion. There is no requirement to go through the base-level assessment for a biologic each time, indeed after quite a few years receiving these infusions I simply let the consultant know when I think my B cells are repopulating, she arranges for the appropriate blood test at the GPs, and an appointment for an infusion duly follows.
I'm struggling to believe you are trapped in this vicious circle. In your position I think I'd contact NRAS for advice and then go to GP, PALS - everyone - with all guns blazing. I certainly wouldn't worry about bothering people, or complaining to your GP. That's what they're there for, and if you don't complain, they just assume everything is OK. I'm not a medic, and only have my own experience to go on, but this seems so, so wrong to me. Best of luck....
I have been having Rituximab since early 2014 and my first duo of infusions lasted over a year then not so long the next time. They can vary with each time. My nurse has always pencilled/booked me in for the next time before I left my second infusion as they had a shortage of treatment chairs. They won’t let you go back for Rtx sooner than 6 months but they look at your bloods and see when the B cells return as well as your CRP. As most people’s B cells start to repopulate between 6-12 months rheumatology should be not making you wait 18 months. I do understand them not wanting to over medicate, especially with Rtx, but there are some people who can’t go much longer than 6 months and also the anxiety of having to almost battle for it isn’t right. Have you spoken to your doctor about this? It isn’t good to be feeling anxious about when and if rheumatology will sanction your Rtx.
Thanks for your reply, I’m still in a quandary as to how to proceed, I’m not sure the GP wants to listen to me complaining, I’m going to see how my condition goes moving forward and if I’m still in trouble I’ll speak to the helpline again, hearing other people’s experiences is helping, I really do believe it’s becoming a funding issue, I’ve been told it’s very expensive.
Well it is but so was an anti TNF original I took years ago before they made the biosimilars. I meant maybe the doc could instigate you getting more of a procedures or plan to get your Rtx more easily and it is important as otherwise you’ll likely flare.
I really could do with a plan, it’s always been a rolling 3 month appointment and usually to say all’s well, it all goes wrong when I feel the tide turning and that’s when the excuses start, it’s almost as if I’m the one dictating the treatment, I’m usually at the end of my tether when they give in, thanks for your suggestions if only it was that easy
Your experience is at odds with most receiving RTX infusions. I have had three rounds of infusions now, at six month intervals, and no vaccinations against SARS-CoV-2 as I had my third round of infusions flagged as urgent, and received them at the point when vaccine was offered.
Then I got pneumonia so hope I might get vaccinated in the autumn IF infusions can be delayed.
But none of that stuff about qualifying every few months… you qualify for the drug then get it at intervals that suit how your body responds but no fewer than six months from the last infusion.
Perhaps a letter to your rheumatologist would keep him on his toes since he must respond and it goes on record.
I always write at intervals so I’m not forgotten and my Rheumatologist has a clear picture of how RA is affecting me.
This tactic prevents mix ups, delays, lack of timely intervention and the need to go higher to complain if things do go wrong without using a ‘keep in touch’ tactical letter.
I really hope your situation might improve but it does not seem likely unless you take action to get things back in course. Pity, but that is how it goes with NHS departments.
Thanks for your reply Charisma,I’ve seen so many nurses leave over the past 7/8 years on ritixumab and it’s difficult to gather a familiarity, I’ve just spoken to the nurse again and the consultant told him to prescribe 3 weeks of pred. I’m so frustrated that the last time I was in trouble it took about 6 weeks to kick in, he did say there was a requirement of proof of inflammation to qualify for funding, I’m afraid we fell out about the past two 18 month gaps and he ended the phone call, referring me to the consultant at a later date, i think I’ll take your advice and write an email to the consultant before my next telephone appointment.
Proof of inflammation will either be raised CRP or ESR levels in the blood or discovered on physical examination of the joints. Unfortunately I think there is a tendency for our medics to rely solely on the blood test results.
Do your joints look swollen at all? You could take photos of them and send them so it’s obvious, particularly if you can’t get a face to face appointment.
The only other suggestion I have is for you to keep a daily diary of your symptoms so you can send it to the nurse or consultant when you feel your next infusion is needed. If you can include photos of swollen joints in that then even better.
Hi Lolabridge, I know I should know my CRP & ESR levels but I’m usually told that my levels are good or there’s nothing to be concerned about, the criteria of old has hinged on physically feeling each joint and asking if they hurt, I know I’m turning when my knees, ankles or shoulders play up, the hands and everything else follows suit, my knuckles are permanently deformed now, not drastically but definitely changing and the odd bone seems to choose a new direction to grow in, my activity score totes up with how many joints are inflamed, it’s like being put under scrutiny, it’s easy to feel good on the day and bad the following day, it’s easy to convince yourself your in remission after being so normal for so long, the changes creep up on me and before long it’s too late a timescale to arrange the time slot which with blood test results required it takes 4 or 5 weeks to organise, it’s all about the funding, it’s as if I’m my own worst enemy, I wouldn’t mind a schedule like everyone else but I’m obviously not ticking the right boxes
I think you’re missing the point about the way RTX is prescribed. I believe it’s an ongoing treatment and I think you might try extricating yourself from this cycle of having to prove need each time.
I’d try to get out of this dead end. I think you need proper advice - NRAS will help I’m sure. If you’ve already established you’re eligible for RTX and have started treatment, what they are in effect saying is that they no longer have the money to treat you.
Thanks for your reply, in fact I have waited 18 months on 3 occasions for treatment, I’m only now coming to realise to qualify is entirely based on funding, I’ll contact nras about how I can move forward, how has the nhs allowed so much private enterprise to live like parasites fulfilling shareholders profits who are ironically all of us.
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