Hey All I hope everyone is well. This is my first time posting and I’m really hopeful someone will be able to advise me. I was diagnosed with lupus in Feb after just over 2 years of struggling with symptoms. Initially I was put on prednisolone and hydroxychloroquine until my bloods came back. My bloods indicated I would need something stronger to bring my levels down so I methotrexate was suggested however after reading about the adverse side effects some people had on this platform I opted for azathioprine (it also helps keep the option of children in the future more plausible). I have now been on 10mg prednisolone (I’ve tried to reduce first to 5mg and then to 7.5mg but each time I do there are adverse effects, my symptoms return almost instantly), 200mg hydroxychloroquine and 100mg azathioprine. At my most recent appointment my Dsdna levels were showing as 95 and were at 127 before starting on the azathioprine. My rheumatologist is concerned that they are not working well enough for me and wants to put me on rituximab which makes me nervous. I just wondered if anyone here has had any experience with it? At my appointment we agreed to up the azathioprine to 125mg which is the max I can take because of my weight and see what happens between now and my next appointment but I’m worried that things won’t improve. I know I need to get things under control because it’s already caused me to develop abnormal cells in my cervix and now I’m getting mild signs that it might be affecting my kidneys (nocturia and traces of protein in my urine). I just don’t know if biological therapy is a little premature, it just feels so extreme. Apologies for the length of my post I just wanted to give as much information as possible. Any advice would be appreciated. I’m feeling very anxious about the amount of huge decisions I’ve had to make in such a short space of time. Thank you in advance!
Biological Therapy - too soon? : Hey All I hope... - LUPUS UK
Biological Therapy - too soon?
Hi, sorry to hear what you are going through, it can be a difficult path . I was initially given azathioprine but my liver was deranged and I was vomiting quite a bit. I got taken off them for about 3 months then was restarted on them again but had the same outcome. The next move was methotrexate, this caused an upset stomach the day of taking and the day after, also felt almost flu like. I changed to methotrexate in injection form and I've never had any side effects at all. Unfortunately my lupus/scleroderma overlap caused damage to my lungs so I was also given retuximab to hopefully stop/slow down the lung damage. The only issue I had with retuximab was that I couldn't sleep on the night of the infusion, for me it was because of the steroids given. 🌹
Thank you so much for your reply! I completely understand why your medication was changed if you were having a bad reaction to it. For me azathioprine has been fine apart from the odd migraine/nausea combo but I just wonder what level Dsdna result would show that it is working for me… May I ask how they concluded that you had lung damage as I have been having breathing issues but my GPs are being extremely dismissive. My rheumatologist told me I had sticky blood so I need to be mindful of chest pains and when I went to my GP complaining of chest pains and mentioned the sticky blood he told me that without me being able to tell him the name of the blood test that was run he couldn’t comment on it - very unhelpful and frustrating!!
It was my rheumatologist who contacted the respiratory department as I was complaining of feeling breathless at times and very tired. My respiratory consultations mainly consisted of lung function tests followed by a 1 to 1 appointment. After a couple of years a decline was noted with my lung function and the respiratory consultant suspected pulmonary fibrosis. I then had a VATS procedure and this was confirmed along with pneumonitis. This was when I was commenced on retuximab, which I stayed on for just under 2 years. Since then my lung function has remained stable but recently I've been feeling more breathless. I've got an appointment tomorrow so will see what he suggests. I'm lucky with my GP, if he suspects anything, he always contacts rheumatology/respiratory for their input. So much better than previous GP practice who basically dismissed everything and by the time I attended rheumatology the lung damage had already started!! 🌹
I have had SLE for 30 years and been on various medications including currently on prednisone, methotrexate and Plaquenil. I the past I have had Rituximab and it was very successful.
Welcome EeBeee!
Before I go on, I'm not a doctor or health professional, just an experience lupie.
It might be useful for you to look at the British Society for Rheumatology's guidelines for the treeatment of lupus. You can find it here academic.oup.com/rheumatolo....
Treatment varies depending on the severity of your flare, which is usually calculated according to a score. But based on what you wrote, it appears you do not yet have any major organ involvement which would suggest it's a mild/moderate flare. Furthermore, rituximab is meant to be given in refractory cases for those who have "failed to respond or have had adverse events to 2 or more immunosuppressive therapies (one of which must be either mycophenolate or cyclophosphamide, unless contraindicated)". From the NICE guidelines for using rituximab can be found here england.nhs.uk/wp-content/u....
As for the cervical cell changes, they are very common in lupus patients and it's not clear if it's because of the immune dysfunction caused by the disease itself or the effects of immunosuppressive treatment. See here and similar studies ncbi.nlm.nih.gov/pmc/articl....
There are a host of immunosuppressants that can be deployed apart from rituximab and the ones you've tried (some of which are suitable if you're worried about gonadotoxicity, e.g. mycophenolate). Perhaps it's worth asking your doctor why they have suggested rituximab over others in your case and what your other options are.
These links are really helpful thank you so much! To my knowledge, thankfully there is no major organ involvement at this point. I believe my rheumatologist was avoiding certain medications to enable the possibility of pregnancy if we were to get the flare under control. I also think that he doesn’t feel the azathioprine is working fast enough in terms of lowering my levels. Is a Dsdna result of 95 very high? I’m have no idea! I just know the normal range is 0-10. I wouldn’t want things to get to the point where major organs are being affected before trying something stronger… it’s just difficult to know what to do because lupus is such a case by case thing… Thank you for all of this information though I’ll be reading through it all tonight!
Have it
I had no side effects but had it too late
They left me with a GFR of 23 and I’m in renal failure now
Dialysis is a pain so don’t let the kidneys deteriorate xx
I had my first rituximab infusion on Friday. Like Carol I also couldn’t sleep that night and am assuming it’s down to the steroids they gave me at the same time. Next dose in a couple of weeks.
I also have lung damage as it took them years to diagnose me. I was diagnosed in 2020 but had been asking previous doctors for tests for lupus since 2001.
I had flushing of my skin that evening and the next day, it was like the malar rash but spread over my chest back and arms too. It was bearable and apparently not a hugely common side effect.
I’ve been in a flare since about October last year as I’m not great at taking my meds (3000mg mycophenolate and 200mg hydroxy) so my consultant decided to try the rituximab. Its too soon to see if it’s going to have an effect but hopefully it’ll be worth it. I don’t want any further organ damage.
If they are suggesting you have it then I would say go for it.
I’m so sorry to hear of your lung damage, 19 years is a ridiculous amount of time to have to wait for a diagnosis, I found having to wait just over 2 years difficult so I can only imagine how you must of felt.
Fingers crossed the rituximab works well for you so you don’t have any further organ damage x
I haven’t used rituximab, but use the injectable biologic Benlysta. I’ve only been on it since October, but so far it has been beneficial especially for joint pain and preventing me from a major flare. I haven’t noticed any side effects. The only big downside is it would be cost prohibitive without insurance and a copay program ( I’m in USA and the cost per month would be over $5000). I tried methotrexate first, but the nausea and feeling lousy two days a week wasn’t worth the benefit to me.
Thank you so much for your reply! It’s great to hear that you’ve found something that works for you. The NHS in the UK is definitely not the best but being in the US with a life long condition can really become very expensive - it’s great that you have the means to make it more affordable
I had cataracts, recently removed, which were quite likely due to the pred. I don't remember being adequately warned about that when first prescribed, initially at high dose - but the pred did seem to quell the pain. I'm now worried about how the hydroxichloroquine may be affecting my eyesight and have asked my rheumatologist to refer me to a hospital optometrist for a thorough check, not having much confidence in the "emergency" check I had at Boots. Currently, I'm on only a low maintenance dosage of pred (2.5mg). I have been having rituximab infusions at 6 monthly intervals (3 times) - no ill effects and I usually feel better for a while afterwards.
Thank you so much for your reply! May I ask how long you’ve been on prednisolone? I didn’t know it could cause that but I do know it’s not ideal to be on them for a long time. It’s been 5 months for me but I’m on 10mg at the moment and can’t seem to drop below that. It’s great to hear that rituximab has worked for you with no major side effects - were you on anything else before aside from pred and hydroxy? Thanks
I think the latest guidance is for annual checks if you have been on hydroxy for over 5 years. I've taken it for 16 yrs now but now in a lower dose than previously, and in this part of Kent they are now doing annual checks since 2023. Prior to that I had a good optician who did visual fields, scans of retina and called me in annually. Suggest a chat with oyur GP on what's available near you. All the best.
- and yes I had cataracts done about 5 yrs ago from long-term steroid use, and it also leads to thinning of the bones. But we need steroids at times -
I've been on prednisolone for a long time. Since I was first diagnosed with SLE. Probably 3 or 4 years.
I was (and still am) on loads of meds, but I'm gradually diminishing the number, thankfully.
Currently I'm on Atorvastatin, aspirin, ferrous gluconate, fexofenadine hydroxychloroquine, finasteride, folic acid, hydroxychloroquine, omeprazole, prednisolone, (vitamin D - not on prescription) and Zoledronic acid infusions. A lot of these are not related to lupus, of course. Previously I have been on alendronic acid, bisoprolol fumarate, methotrexate, mycophenolate, co-trimoxazole.
Sorry to hear your struggle sounds very similar to my own, I had biological therapy in April and May this year, it has worked absolute wonders for me, I feel like the old me again. I had about 4 rough days with the initial dose but now I am back doing everything I used to do before my symptoms developed. Elated is how I've felt. I've remained on hydroxychloroquine and methotrexate which were not cutting it before the infusions, it is a rather invasive treatment but I couldn't be happier I was offered the opportunity to have it 
I hope you get the help you need and your journey gets easier for you xx
I was put on Rituximab and it works really well. It’s only natural to be nervous and wary but I have never looked back, and so if I were you I would at least try it. You never know it could work for you.
Good luck with it.
I am sorry to hear about your difficulties. I was initially taking Methotrexate for a few years but it wasn’t sufficiently effective. It was changed to Azathioprine. I take 150mg each day and have done now for years. I also take 5mg Pred and Hydroxychloriquine. These have been my staples for some years. I worried about Pred but cannot get it below 5mg. I immediately hit a flare if we drop it, which we do at half a mg at a time. I still worry as I have lost some height and bone density shows where the problem lies. I get the worrying about what is written about a medication but to be honest I wanted to feel well and went for quality of life and control of lupus as best as could be achieved. I have a diagnosis of Antiphosphilipid Syndrome APS too or sticky blood. It’s interesting the comments here about the blood test and which test. I had a pulmonary embolism when I was at a period of 4 years of being extremely unwell. My local hospital took the view I hadn’t been mobile enough and refused to recognise that diagnosis which was made by a London consultant at St Thomas. He was very clear I required warfarin for life and on balance about quality of life, I agreed. I also have a diagnosis of Fybromyalgia and get significant migraines with no obvious reason why, than I do. So I have treatment for Fybromyalgia included in my package, along with painkillers. My heart has been affected so have meds for that too.
I share what I have to attempt to reassure you and explain my journey. Each is personal and we all have to make our own decisions based on what works best. I watched my mum struggle with lupus and have a poor quality of life. Her treatment was steroids up or down. I wasn’t going to choose an existence like was her lot. I intended to enjoy as good quality of life as was possible. She had plenty of other things that went wrong, but never got diagnosed or treated for them. I have chosen to ensure I do and it has really helped. I am 15yrs from my lupus diagnosis this autumn. I had been unwell for 25yrs ie from my teens before I was diagnosed. Doctors refused to do anything until they got ‘the right’ blood result.
I am pleased I made decisions about me and was listened to and supported by a medic at St Thomas. Generally I am well, but not really. I get all the usual problems in particular a debilitating exhaustion. I would advocate you decide what you want medication to achieve and then with support of medics, be brave with your decisions and go for it. That sounds easy but it isn’t and I wish you all the best as you find your path and make your journey to better times ahead.
Hi EeBeee,
I was diagnosed in 2017 after being ill for 5 years.i was put on hydroxycloroquine and did not tolerate that at all. Switched to Mycofenolate motefil and was good on that one, over a few years the dose was increased several times, but got to the point where it wasn’t effective, changed to Azathioprine and was *really* sick on that one, vomiting, upset stomach, deranged liver function tests. Then Rituximab I had an infusion last weds as it happens, ( my 5th I think) and I’ve had no lasting ill effects from it, I have an allergic reaction when it’s first put in, and my BP drops, but it settles, Im a bit sleepy for a day or two, but most people are the opposite, as sure given a steroid intravenously first, many people say they can’t sleep!
The length of time they last seems to vary, one was 8 months, one 12. Also it’ll vary from person to person, they can’t be done more frequently than 6 monthly apart from the first two, which are given 2 weeks apart.
I believe you’ll only be approved for rituximab if you’ve had adverse reactions to other meds ( here in the UK)
Good luck
Following on from lingdings lovely response, it is worth noting that the guidelines are undergoing a rewrite based on ever expanding knowledge base etc. There are hints of what they have been looking at on the British Rheumatology Society website - look for guidelines under revision on the main page. Do let us know how you get on if you feel able.
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