Rituximab or Leflunomide

[Maverick77]

Having stopped rituximab in October after being informed there was no immunity for patients on it, I started leflunomide in the meantime until I got all my vaccines and I find I’m feeling really well on it. Has anyone else tried Leflunomide and what are your thoughts on it.

[Penelope-Mary]

Hi Maverick, your post jumped out at me with the ‘ no immunity’ reference. I’m on both Rituximab infusions and Leflunomide and feel I need them both. I’m triple vaxxed . Were you warned by a rheumatologist or immunologist, regarding Ritux and not producing antibodies ? I’ve not had a titre done ( I live in Australia and it hasn’t been offered to me.)Anyway it’s good to read you are feeling well with Leflunomide alone; I have been on it for many years and it has been the most effective drug offered.

If you have a moment would you reply with any information you have regarding inefficacy from Ritux towards vaccine protection. I totally understand if it’s too much!

Kindly, Penelope 🌸

[Maverick77 in reply to Penelope-Mary]

Hi Penelope-Mary I went to hospital in October for my 6monthly ritux infusion (which was overdue and much needed) My consultant asked me did I realise that patients on ritux had died as they had no immunity while on ritux. I had read in the lupus uk magazine that patients had no immunity but when I questioned my lupus nurse he said I had picked it up wrong. My consultant might as well have slapped my face it was a shock to hear it from her. So she gave me a choice I could have ritux if I wanted or she could give me leflunomide . I had no time to research or even think all I heard was ‘no immunity’ so I chose leflunomide. If I had read the reviews I may not have taken leflunomide but it seems to be working🤷‍♀️You must have been pretty ill to warrant taking both. How long have u had lupus🧐I have managed to survive the past 2 years by being careful but there are a lot of restrictions on life now as all restrictions in Northern Ireland have been lifted and no one has to wear masks. Also we have very high numbers of infection on omicron which is not life threatening for the majority but the clinically extremely vulnerable are still just that🤦‍♀️

[Barnclown in reply to Maverick77]

For what it’s worth:

If you haven’t seen this 2021 study re AID, ritux & immunodeficiency (especially below range immunoglobulin G aka hypogammaglobulineamia) already, might be useful to you both, &/or others. This is why it’s good to get baseline immunoglobulin blood test results before starting ritux….& why might be worth taking leflumonide instead 🤷🏼‍♀️…IF you have a choice

frontiersin.org/articles/10...

❤️🍀 Coco

PS those of us with below range IgG (hypogammaglobulinaemia, if IgG, A & M are below range it’s panhypogammaglobulinaemia, like me) need immunoglobulin G infusions to increase our levels of IgG because without IgG in normal ref range we can’t, or are extremely unlikely to be able, to create antibodies in response to vaccines of any kind ie COVID Vacc.

However, if we develop chronically below range IgG & still need ritux to control our AIDs, we take ritux and are considered for Immunoglobulin G replacement therapy at immunomodulation doses.

Also, immunology has advised us to have all the COVID vaccines as per same guidelines as all other Clinically Extremely Vulnerable patients. So we continue mask wearing etc, social distancing etc. I’ve actually never stopped shielding🤷🏼‍♀️. It’s hoped that we will have COVID antibodies in our IgG serum products soon. But the efficacy of those antibodies in our cases is as yet unstudied. However, in the U.K., we are now on the specialist early PCR pathway to urgent antivirals treatments at first positive test.

[Penelope-Mary in reply to Maverick77]

Hi Maverick, heavens that was well…quite brutal to hear; you must have felt totally overwhelmed. Consultants all have their own interpretations don’t they; depends whose care you are under as to which treatments you receive. I’m sure I’d have reacted exactly as you did.A year or so ago whilst at an appointment with my rheumatologist and discussing vaccination he suggested having one a month before the next Ritux infusion to allow development of antibodies but no thoughts of ceasing the infusions. We can only really follow their directions but stay informed 💁🏼‍♀️.

I’ve had lupus for 20 years now and I’m offered an ‘extra’ drug every couple of years 😂. I’m just chronically‘moderately severely’ unwell I guess. I did see that description on a form once.

Myositis and serositis are my challenges. Muscle pain is my bête -noir and is the reason for the Ritux addition. I also take celecoxib, DHEA, prednisolone and hydroxychloroquine, plus warfarin for antiphospholipid syndrome .

We have a daughter who in her late 30’s who has the same diagnosis which I find distressing. My late mother also was affected 🤷🏼‍♀️ 🧬.

I understand your fear of life returning to normal. We still wear masks and have had severe restrictions for most of the past 2 years which has meddled with our confidence. My advice ( to myself 😅) …Stay current with vaccinations and avoid crowds! What else can we do 😐.

And take notice of what our dear Coco says 🤍!

[Melba1 in reply to Penelope-Mary]

Hello, the latest research shows rituximab is a risk factor for us getting severe covid due it reducing/ stopping vaccine being effective.

Timing of rituximab and vaccines is important but also (as always with us 😬) it’s that difficult balance between how much we need the rituximab to control our disease to take that added covid risk. Because uncontrolled lupus can obviously be dangerous in itself and can also raise the risk from covid particularly if lupus causes our complement system to be activated and then low as that’s another risk factor for covid.

I wasn’t very cautious about covid (obviously followed rules, masks etc) but have children so couldn’t properly shield at all and wouldn’t have chosen to anyway because I think we’re all mostly going to get covid at some stage unless isolate completely for ever, and this version is much more mild and our risk has now been found to not be that much more than general population (about double) so vast majority will be ok.

However, I nearly died from covid. I’m on rituximab, had had cyclophosphamide and on high steroids so was about as high risk as you can get. I haven’t shared my covid story in here because think I was just unlucky and don’t want to scare people 😬 but think I probably should post it as there were some key points (and major hospital errors) that might help others.

I’ve had covid twice. First time was unpleasant flu like for a week but not too bad and about a month of breathing difficulties. Second time I felt ok- ish for the first few days just flu- like and vomiting but it quickly progressed to severe pneumonia, then I got bacterial pneumonia on top and my immunity was so bad, a fungal pneumonia and systemic fungus infection, followed by sepsis and meningitis. 😬 A month in hospital then discharged but all the fighting so much infection and having to stop lupus drugs then majorly kicked off my lupus so was back in hospital for that. All very unpleasant but I survived! Various organ specialists are just picking over their various bits to see any permanent damage but most things seem to have recovered/ be recovering well. Us lupus patients are tough!!

As I say I think just unlucky and I’m on the more severe end of lupus, prone to sepsis, with lots of meds and other health issues and am admitted to hospital several times a year and no stranger to resus or being told my chances aren’t good… I don’t know whether it was rituximab or more likely a combination of all the drugs and my low complement issues etc but it has made my consultant and me think carefully about next dose of rituximab (due now) but if can be cautious socially and need it for disease control I think I’d still have it.

Also not sure about in Australia but we have the anti viral treatments now which have been found to be very effective if used within 5 days of symptoms. I was supposed to get them but a series of delays and admin errors and ridiculous NHS rules (you can’t have once admitted and they were giving to outpatients next to me but because I was an inpatient by then it wasn’t allowed 🙄) meant I just missed out on them and I’m fairly sure I wouldn’t have been so sick if I’d had it then.

They also tested my antibodies at the start and apparently i had got antibodies from either the previous infection or vaccines (not that it did me much good!).

Sorry if that’s a frightening story, but there were lots of things that contributed to me getting so sick (including absolutely dreadful, over- stretched clueless hospital care where there were no doctors on the covid ward at all over a 3 day bank holiday weekend - they only came when two of us lost consciousness and the nurses were crying) rituximab is just one of the factors that may or may not have influenced it.

I think the other main biological, benlysta is lower risk and (again not sure about US or Australia rules) is now approved for funding for those of us with low complement whereas it used to need dsDNA positivity to be eligible so that may be an option xx

[Maverick77 in reply to Melba1]

O my goodness Melba1 you’ve had a horrendous time of it. But you survived. I hope your health improves and you get back to your normal soon. Lots of love ❤️

[Penelope-Mary in reply to Melba1]

Heavens Melba1 you have had a truly dreadful time. You must be feeling vulnerable and exhausted from this. I appreciate your discussion balancing between the risks of infection from Covid and the inevitable sequelae when ceasing some lupus drugs. I’m sure you had conflicting advice from medicos and others. My rheumatologist didn’t even raise the topic so I didn’t either 🤷🏼‍♀️.I shall have the next Ritux infusion due May but will also be careful in group situations; you have given me pause for thought however.

I hope you are gathering your strength now and feel less vulnerable since I’m assuming you’ve had both delta and omicron strains…..of course there will be others but evidence is showing that tolerance increases with exposure.

I agree with you, disease control means you need to be socially cautious so you can take all that is offered. Having a young family means you literally cannot avoid contact with others and the risk of them bringing home the virus is high.

I did read that Benlysta has made a resurgence, I’m not sure whether it’s available here.

Thank you for sharing your frightening story, you’re very brave and I cannot imagine just how difficult these past few months have been. We have daughters who have lupus and psoriatic arthritis and are on biologicals. They have young families and simply have to forge ahead. They both had Covid, one whilst in the USA and the other here at home. It was a nightmare, everyone was quite ill. Not as ill as you !

Again thank you for your story , sending virtual 🫂 and 💐

PM

[Maverick77]

Thankyou Barnclown this is very interesting. My consultant said she would check my bloods for antibodies but that was 3 months ago and haven’t heard from her since.

[Barnclown in reply to Maverick77]

You’re welcome! Yes…not sure how they decide who gets checked for COVID antibodies: immunology hasn’t checked me 🤷🏼‍♀️ either…but maybe do ask whether they’ve checked your Immunoglobulin G (IgG.) level, cause blood is easy to test for this…and IF ritux has made your IgG levels fall below normal reference range, it’s relevant to your ability to make COVID antibodies in response to COVID vaccines, ie chronically below range IgG (hypogammaglobulinaemia) mainly means it’s not possible to ‘mount vaccine response’ after most types of vaccination including COVID vaccination)

[Maverick77]

My lupus nurse told me I have to be referred to an immunologist to have antibodies checked🤷‍♀️

[Barnclown in reply to Maverick77]

Fair enough, so your nurse was talking about COVID antibodies. Do you know if your blood immunoglobulin G level has ever been tested?

[Maverick77 in reply to Barnclown]

Probably not recently but I had bloods taken in October when I last saw my consultant and took for granted that would be one of the tests as she said she would test for antibodies at that visit. I did get results of those bloods but antibody test was not done🤷‍♀️Nothing surprises me anymore with nhs.

[Barnclown in reply to Maverick77]

If these tests were ordered by Rheumatology, that Dept seldom tests for immunoglobulin G…Bone Profile blood tests can include immunoglobulins - eg rheumatology testing related to osteoporosis treatment

Also, in blood test reports immunoglobulin G is listed by name specifically as itself

[Barnclown in reply to Barnclown]

Have you ever seen this Immunoglobulins category in your blood reports?

One of my old immunology blood test reports

[Maverick77 in reply to Barnclown]

I’ll have to check my blood reports. I took my consultant at her word when she said she would request appropriate blood tests. Thankyou for your reply😉

[Barnclown in reply to Maverick77]

Good luck👍🍀❤️

[Maverick77 in reply to Barnclown]

Right back at u Barnclown😉

[Kaziecat]

Hi, I have tried Methotrexate, hydroxy, retuximab and mycophenolate. I am now taking Leflunomide and it has been a game changer for me. Up to 20mg a day (or at least I will be when the vaccine side effects and tonsillitis leaves). I have managed to start a part-time job and function a little more like a human. It has helped with the fatigue too. It has taken 5 years to get to it, but I'm glad I'm finally here. 🥰

[Maverick77 in reply to Kaziecat]

Hi KaziecatIt’s so good to hear this. I want to stop using ritux but my lupus nurse said it’s too soon to tell. I know my body and I can def feel a big change. Stay safe and stay well.