For those who have been prescribed Rituximab... - Vasculitis UK
For those who have been prescribed Rituximab in the last 12 months. Have you, as a patient, experienced problems accessing Rituximab?
John_MillsVolunteer52 VotersPlease select all that apply:
I had been put in for urgent Rituximab 2 weeks ago as an in-patient in Leeds, follow-up dose today - so very lucky!! But I was clearly an 'exrra' case & staff were really stretched on the day ward today. I felt lucky not to experience a delay!
I got all my doses on time as usual - was very surprised !
Not had problems with it being prescribed but have had to chase it due to being late throughout the pandemic
I had session in January then had to wait nine months instead of six for next one , received it as soon as l became ill.
I asked my consultant to delay my most recent Rituximab in case I should contract COVID. Isn't there a greater risk than just being on immunosuppression drugs like Aziothiaprine?
No problems at all. Original two infusions in October and November 2020 after kidney biopsy showed active GPA. First 6 monthly maintenance infusion went ahead as planned in early May 2021
Had 2 doses in May, 2 weeks apart and will possibly have another one around November
My sister received her first two under emergency funding but has then been told it will have to be applied for. It is then not clear if she will get it because it is clinically indicated or if she will be given something else because it is cheaper......so hope not if Rituximab is best????
Have been told that as it's my partners 13th infusion, they may have to "adjust" the dosing or change treatment altogether to prevent drug toxicity. His six month time frame has also lapsed. Unsure as to what's happening or why?
All gone ahead as scheduled.
Never had any problems place order for prescription and usually receive in Two days.
It took us about two months to get insurance approval for Rituximab. It was considered off label use. My son received two doses. It did kill off his B cells. However, his brain inflammation returned once they lowered his prednisone. Now he is on monthly tocilizumab infusions instead, along with monthly subcutaneous immunoglobulin G. We will see what happens with the next MRI at the end of the year. The goal is to reduce the prednisone.
No i haven't had my 6 monthly doses on time. Die my next dose on Monday 2nd August
I recieved my first dose in March and the second 2 weeks later
Consultant will only prescribe a half dose due to low immunity to infection and risk of COVID. Thanks
My infusion was cancelled in first lock down and I waited three months then got it. I didn’t feel any worse for having missed it so when my white count was too low to give the second infusion I was happy to put it off for another three months knowing I’d be fine. Bloods still too low so got half a doze.
No issues at all.
It’s nearly a year since my last Rituximab. The Consultant told me that according to research there is greater benefit to be had with lower doses than previously thought. (I haven’t got details of the research). He also said that there is a greater risk of catching COVID following Rituximab and thought it needed to be used sparingly. However if I needed to have any due to any flare up I could do so but it looks like I won’t be having any routinely at 6months.
Thank you for taking part in this poll , this information is very helpful
My rheumatologist was reluctant for me to have it because of the risks around covid but agreed as I really felt I needed it
Shortage so delivery was delayed and reached
Hello John, hope you are on the mend now. My background.....I started to feel ill around June 2016, was treated with antibiotics for what I thought was an ear infection but this had no effect, I was also very fatigued even to the point that I fell asleep once on the toilet at work! I went to give blood one day after work as I did regularly but they did the test and said I could not donate that day, then a Dr came over with the nurse and asked me how I was feeling....I just said a bit run down and tired with work and this "ear infection". He said looking at my blood test it was a wonder I was still standing and wrote me a note and said I must take it to my GP straight away for further investigation. I did this and was referred to Kings Mill hospital for what I later found out were cancer tests - this came back clear but they had no idea what it was so referred me to their ENT who did some tests but then referred me to QMC hospital in Notts, the ENT doctor there had an idea what it could be but was not sure so referred me to Rheumatology under DR P. Lanyon who after more tests diagnosed Vasculitis GPA and immediately put me on high Prednisolone plus other med's and I began Cyclophosmadine infusions at the beginning of October 2016. By this time I was almost completey deaf with sinus and nose issues but began to feel better as each week went by. After my 9th infusion in March 2017 I was unwell and even called paramedics in who did tests and blue lighted me to Kings Mill A and E - there they isolated me and did some scans but said they saw a cloud on my chest but sent me home with antibiotics! I felt no better but had my next infusion due a couple of days later at QMC so left it at that although the sharp stabbing pain in my chest when I breathed in was very unpleasant. At my next infusion they asked me how I had been so I filled them in but when they contacted KM they denied even seeing me so I showed them the ECG from the paramedics that I still had from the day I went in - they then did their own tests, saw the shadow and admitted me to the cardiac unit as they said I was too ill for the infusion.....the next few days/weeks were not good and I ended up having a pericardial effusion with no anesthetic which was awful, but as soon as they got the tube into the cavity and it started to drain my breathing got easier which was good. They removed over 1,5 litres of a dark red/black fluid and sent off for analysis but was inconclusive. I was put on high Pred again and Rituximab. Once things had calmed down they said I would need annual Rituximab infusions as I had relapsed so badly and they did not want this to happen again as they could not tell what organ damage would occur. I should have had my annual Rituximab maintenance infusion on 26/08/21 after having bloods done 2 weeks previous on 12/08/21.
However, at around 4:00pm on Friday 20th August I was called on my mobile by one of the jnr doctors under my main consultant (Dr Peter Lanyon) to tell me that as my 2 previous jabs had given me no protection they thought that a 3rd would be miraculous and do the trick but wanted me to wait for my Rituximab until this 3rd jab was available? Bearing in mind I was on the phone and am very deaf even with hearing aides I told them that I was not happy as I had been isolating for around 18 months, had both jabs but still needed the Rituximab to stop me from relapsing - my words went unheeded and was just told that this is what was going to happen (made me a tad anxious I can tell you!). I managed to get my 3rd full Pfizer jab at the end of September and then had to wait 4 week to have my Rituximab - which was a stressfull period. I have still maintained social distancing and limit my contacts to family and a couple of close friends, hardly go anywhere and if I do I wear a mask and use the hand sanitizes etc so imagine my dismay when on Christmas day night I started to feel unwell, had a restless night coughing, sore throat and headache. Boxing day felt worse with joint pain, tiredness, very sore throat (no tonsils either) so did a lateral flow test and was positive for Covid! my youngest daughter tested negative so I repeated the test and was again positive so we booked PCR tests for the next day, my eldest daughter is training to be a nurse and has already had Covid called the ward sister/leader who arranged for her to have a PCR test as well. Both me and my youngest daughter came back positive but the elder one was negative. So explain that? we all live in the same house etc. I have managed to speak to one of the nurses at QMC who is running a Covid study that I am part of who advised me to apply online for the Panoramic antiviral treatment (Molnupiravir), I have but not selected - instead I am to just see how it pans out and write a daily diary thing. A bit long winded I know but this whole Covid and vaccine versus every other illness makes me quite angry.
Darren (d.vincent@ntlworld.com)
hi john i had 2 infusions of ritiximab when i was first diagnosed with gpa which quickly put me into remission now i am going through bad flare i asked about ritiximab was told to up steroids and change from azathioprine to myfenax was then told i possibly could get ritiximab if that did not work i think its bad that certain trusts will not give ritiximab freely people who need it
my consultant recommended I move from Azathioprine to Rituximab in July he said it would take a good few weeks to set up had my first infusion end of Aug and second one a fortnight later ,the day medicine unit was really busy they tried to move my second infusion to a later date as they said they could only have two people per day having Rituximab
Rituximab is a game changer in the treatment of severe autoimmune GPA vasculitis that is ANCA positive. However, it seems that availability is region dependent in the UK. I am in Gloucestershire and they didn’t allow me to receive it as first line (despite my request). I had my first dose after a flare up while taking pred and mycophenolate - 10 months after diagnosis. I sought a second opinion from regional specialist and he said that he would have prescribed it from the initial diagnosis (together with pred).
It is about £1,000 a shot. That is the reason some PCTs delay it.
