so I’ve not been on here for a very long time while I’ve been going round the houses with different consultants. I’m now in the position where I’m getting bad flares and high ANA but a bit of a question mark over whether it’s lupus or multiple autoimmune issues causing it. MCAS is strongly suspected (by me!) but that door was shut as the specialist won’t look at it until my immune system is under control - not sure how that helps because my body is randomly reacting to drugs making it very difficult to get it under control. I’ve now been told I have fibromyalgia, chronic fatigue, hyper mobile, hadhimotos and positive for lupus anticoagulant but no incidents to cause a formal APS diagnosis but have been started on 75mg of aspirin daily since yesterday.
that’s the highlights covered 😁. It’s been over 3 years since I physically saw a rheumatologist and been receiving phone consultants very infrequently and just been given depomedrone IM injections up to 4 times a year as needed while everyone refuses to give me steroid tablets because of the side effects. Unfortunately the last one 2 months ago wore off too quick and unusually I’ve gone straight into another flare where my fatigue levels have me at the stage I just want to sit and cry which is unlike me. Thankfully my telephone consult I had yesterday with a locum he approved another injection today and told me I could start on steroids if I want - I’ve said I want a face to face consult first to discuss it fully so that’s booked in for 2 weeks time.
while talking to him and going through all the drugs I can’t tolerate .. plaquenil, azathioptrine and nsaids cause severe stomach problems. Micofenelate gave me such hideously bad headaches within a few days that I could barely get out of bed. Methotrexate injections I was ok on but after about 18 months and on higher doses I was staying stable just below a flare so tipped over very easily and the side effects were getting stronger and the benefits were no longer enough to make it worth it so I was taken off that. So the consultant asked me if I’d ever been on Rituximab which I’d been previously told I wouldn’t qualify for as disease activity is low to moderate not advanced and I don’t have organ involvement.
so while getting my steroid injection from the lupus nurse today I discussed the options and it came up again. Basically as far as I can see I’m pretty much now down to 2 main options being oral steroids or biologics. The nurses view was that at 50 I could be on steroids a very long time and on the basis that we’ve exhausted all other options Rituximab is something that might be an option for me. She said that my immune system would be heavily suppressed but how much that is an issue I didn’t think to ask and obviously with covid that would have to be a consideration but other than that the downsides are much less and there are fewer long term side effects.
and that’s where I’m at and why I’m here. I’m not asking anyone to tell me what I should do and I know we all react differently so will weigh up all the pros and cons in detail first but I like to go into my appointments fully armed. And as much as I love most of the lupus team with the nurses being amazing there is no better advice about the practicalities than that from those that are actually living it. So can I ask what peoples experience has been of either or both options? Both good and bad. Any help, input, effects, side effects, considerations such as immune suppression, lifestyle changes that leads to etc all very gratefully received.
oh and sorry for the essay .. but well, you know 🤦♀️🤷🏻♀️
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Mifford
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Can I just say you will be very welcome to come over to PMRGCAuk and read/question our collective experiences with steroids at various doses and for varying durations. And how to cope with many of the so-called side effects. I say so-called because I had several of them as a result of the PMR ong before I was offered pred!
Doctors have a far greater fear of steroids than the patients who get to live a near normal life through taking them. I've needed 15mg and more for the last 3 years, even before was rarely under 10mg, but I have few identifiable adverse effects - frizzy hair and thin skin are most obvious! But I coped with caring for my husband until he died which I couldn't have without and the last 13 years have been far better than the previous 5 when I had untreated PMR, was disabled, rather isolated and in constant pain.
Thank you. I must admit I’ve been fairly unkeen on steroids until recently but by now it’s a quality of life vs side effects question. Talking to the lupus nurse today it’s more a worry that I could be on them for 30 years plus if I go that route as I have no other options available. I already have dodgy hips and that raises concerns long term. But if all they will do is give me quarterly injections it’s no better and I may as well take them so I feel better all the time not intermittently! Oddly I don’t really get side effects from the injections - contrary to what should happen I always lose weight with them too. 5-7lbs in the week I have them despite eating rubbish which only starts going back on once it wears off 🤷🏻♀️
If they are deep i.m. injections - why are they giving you so few? They are used occasionally for PMR and given approx monthly. But some rheumies haven't read the paper about it properly and try to manage PMR with infrequent injections. They are thought to cause fewer adverse effects because you are always tapering steadily.
I’ve been told they won’t do more than 4 in a year as a maximum by a number of different doctors. Not sure why - maybe it’s different with lupus? This one is after 2 months rather than 3 which is unusual for them to agree but I desperately needed it again. I had gone on an HRT patch that I think didn’t help so have stopped that on the advice of my gp but I also had my 5th (!!) covid vaccine a few weeks ago and that’s sparked me on a couple of the others so might be the culprit
No - I think the difference is when the same injections are used for joints the maximum is 4 in a year - but deep i.m. is different. Lots of rheumies are unaware though - but what do we know, we're just patients!
This is the reference for using the inections in PMR
That’s incredibly helpful thank you. I’ll see if there is any argument against increasing injections possibly at lower dose to stop me going up and down so much .. oral medication gives me so many issues with my stomach this would be more appealing than tablets
I’d also add that the Rheumy I’m seeing isn’t the main lupus specialist either. We have a nice new hospital and I’m reactive to their lights so can’t see him there. By this point I think it’s time they found a way round that and put me as first clinic patient to minimise the challenges so we can get me back in to see him. It’s ridiculous that my treatment could be restricted because they can’t turn the lights off!
That has been the main reason I have come across patients being put on it for PMR, I know a few. There was even one lady was on it for GCA despite the very high doses needed there because she had had gastric bleeds with pred in the past.
Don't know if it helps but there is also enteric coated pred in the UK - quite a few people with gastric problems find that they make a big difference to them. The tablets pass all the way through the stomach to be absorbed in the duodenum or lower.
I've been on rituximab for about 8 years and found it very helpful a big relief. My GP referred to steroids as 'a sticking plaster' not advisable long term. Yes there are significant downsides to rituximab which seems to reduce the impact of the anti-covid vaccine but we are top of the list for antivirals, and I'm happy to keep social mixing at arms length in exchange for feeling as well as I do. So I wouldnt hesitate to opt for rituximab.
Hi I've been offered Rituximab as my Kidney Condition : Nephrotic Syndrome relapsed after a year and was back on high dose then reducing dose steroids and been told I've become Steroid Dependent . Am discussing it on 12th August with Consultant and am going to accept it as really don't want to be on steroids long term. I've read up on R'mab and seen good success rate in different articles and for different conditions. All the best to you.
Hi Mitford, Rituximub helped me out tremendously. I didn’t have any side-effects that I’m aware of. The only thing is right after, I got a little bit emotional because the nurse gives me a shot of prednisone in the IV line. I got infusions every 6 months for about 6 years. I never got bombarded with sickness from Rituximub lowering my immune system.
My ANA is now good and the pericarditis is gone.
I’m still taking 5 mg of prednisone and also Plaquenil. I do miss my Rituximub, but my rheumatologist wants me to wait longer than 6 months. I’m now 4 months overdue and I can feel it.
Thanks everyone. My appointment got overtaken in the end as it looks like I may have herniated a disc in my neck so that became the more urgent issue. My husband rushed me in to A&E last Tuesday morning in absolute agony. They ascertained that I’ve lost feeling in my thumb and first 2 fingers and my grip has gone with some feeling loss down my left arm. After 3 hours in agony because there was nowhere for me to lie down they realised I had a Rheumy appointment the next day so told my they think I’ve trapped a nerve so sort it with Rheumy and sent me home. No x day, no painkillers above the cocodamol I already had, nothing. Rheumy quite rightly said it’s not his department but did a referral for an mri and ultrasound and said get pain management from the gp. Impossible to get a gp to talk to and they prescribed naproxen which I’m allergic to! Which is better than the doctor on 111 who told me reduce the painkillers and relax with some music or a glass of wine so the muscles would come out of stress 🤦♀️ After 4 days of feeling like someone was operating down my arm without an anaesthetic I finally spoke to a gp who gave me oromorph. I chased the mri yesterday and was told it would be a month - after my husband going bananas at them we now have an appointment this evening. I’ve seen a physio who is 99% certain it’s a slipped disc and horrified nobody has done anything. So MRI tonight and gp appointment face to face Friday to get a physio referral. In the meantime I had the worst upset stomach ever last Friday night and now thanks to the morphine haven’t been since which is becoming its own problem 🙈. (Sorry if tmi!). In the meantime the Rheumy is back to well your exceptionally high ANA which only reacts to steroids might not be lupus because the specific tests come back negative and is talking about sending me back to Guys so it seems to be a never ending merry go round because I don’t tick the normal boxes and one day someone will finally treat me 🤦♀️🤦♀️🤦♀️🤦♀️🤦♀️🤦♀️🤦♀️
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