Trying to get a measure of the stages and various meds that treat lupus, and wondering if/when anyone was moved up to biologics like Belimumab and Rituximab.
I understand lupus is treated softly softly, as in mildest immune suppressants first and gradually move up the ladder, and biologics are stronger and given be injection or intravenously?
Did anyone have to work up to these and any success or issues? And how long before consultants considered these were the next step?
In the UK, almost all rheumatology starts with the "mildest" medication first. All that can be done is achieve medicated remission of symptoms and keep them there, there are no cures as such. So you start low and work up the scale because a low level drug may work well for a time before you need to scale up. If you start with the heavy guns - there is no option for going back really. Your doctors assess what they think is the most appropriate - and try it.
Thanks for your reply - yep I understand you have to have somewhere to go and not suggesting for a moment that you throw everything at it so there is no where to go. I just find it frustrating and upsetting for permanent damage happening whilst on mildest medication and (given alot of these non biologic meds take 3 month to even show if helping) I don't know why you can't be considered for a step or two up the medical scale - not necessarily jumping straight to biologics - when symptoms are not being alleviated by the mildest over months and months.
Just wondering for those that did reach the biologics treatment level - how long did take to get to the point and did they (being the stronger hitters) help get lupus under control?
I think it probably depends a bit on your doctors - and are you being VERY clear that symptoms aren't improved?
I don't have a choice in the UK - only thing approved for PMR is pred. The DMARDs work for some but very few and can be horrid. But even the bigger hitters may not work for you, lupus is a very convoluted disorder.
A good question and I understand your frustration. I think how and when you 'move up the ladder' depends on several factors, including drug efficiency and how well you tolerate it.
I am on the journey to find the right meds. I am on my third DMARD- have tried Methotrexate (managed 8 months but side effects became over whelming), Leflunomide - caused significant sore throat.
After two OKs years just on Hydroxychloroquine, I developed pericarditis and possible pleurisy so Azathioprine has been added- I thought I was tolerating it very well but it is suppressing my neutrophils and so I may need to come off it. Next step!!... well I have to wait for next blood results. Meanwhile, I have just come out of a really nasty flare and battle to remind myself that I am on the right path even though I know the disease is active.
Ultimately, I have to trust the Consultant, balancing her understanding of how my disease is progressing and the various risks posed by many of these drugs, a complex balancing act. Biologics have been mentioned but my understanding is that Mycophenolate has to be tried before this.
I also understand that the best practice advice for treating Lupus is being re-written - see the British Rheumatology Society, so maybe how drugs are used etc might be revised.
Hope that helps a little.
Hi RosieA
Thank you for your reply - did you find just being on Hydroxychloroquine work then? I am here as my daughter (24 years old) was diagnosed in June and trying to understand, educate myself and support her through this journey. So I am blessed to not be suffering (would give anything to take it from her) but am thankful for everyone's advice and experiences.
She has been on hydroxy and prednisone and added azathioprine recently with other meds to help side effects. Been on hydroxy for 4 months but wanted to know how they know if its making a difference if they maintaining steroids and adding azathioprine and symptoms are raging since the start. As she has discoid with SLE the latest symptom is hair loss. So going with mildest meds and working upwards I understand but with permanent damage now happening its very worrying that it has to get so far along to up to stronger suppressants to slow the damage. Have been looking at the Society website and as many resources as I can to try and understand the method in the madness that is Lupus.
xx
Hydroxychloroquine is a 'gold standard' drug and research seems to show that it has many protective factors as far as lupus is concerned but it does take quite some time for it to work. Azathioprine will take up to three months to get to full effect. It is common to be on several drugs. I should imagine that as soon as the AZA comes into effect they will want to reduce the Pred: Its not a drug you want a young person to be on for a long time. It is distressing and frustrating and there are no quick fixes - I wish.
I think, they get very twitchy and take faster action if there is potential organ damage and will then escalate treatment. It is very early days for you both and I should imagine you are overwhelmed but things will take a calmer stance once the disease is better controlled and you understand more and more.
If you have a specialist nurse that you can contact, do use the service. Explain your concerns, the hair loss etc. My experience is that the specialist nurses are excellent and will do what they can to support you, reassurance or refer back to the consultant.
This site is excellent so fingers crossed we can support you. x
Thank you so much. Yes she has a contact number for specialist rheumatology nurses and had told her to report the hair loss back quick.
Would just be good to get it under control and not wait for the next new symptom to add itself to the growing list. And don't want organ damage to have to be reached before they throw the bigger guns at it. But do understand there will be rhyme and reason to what I may think is madness.
xx
Hi smeakles,
Good question!
I was diagnosed with lupus nephritis in 2016 after a kidney biopsy and was given a choice of two treatment routes by my consultant nephrologist : traditional MMF tablet medication (Mycophenolate mofetil) immunosuppressant OR to be a guinea pig for the experimental (very new, on trial) Rituximab monoclonal antibody which required a two hour iv hospital infusion. I was so scared of needles at the time I opted for the simpler tried and tested MMF.
Things have moved on:
My skin lupus (SCLE & DLE diagnosed in 2012/2013) has returned with a vengeance!
Red rashes all over 😨😱and will be seeing a dermatologist soon. So will be expecting a full medication review.
Prescribed topical steroids last time eg Clobetasone and Tacrolimus monohydrate (Protopic) ointments not working and impractical so may have to revisit the monoclonal antibody systemic treatment?
Scary at least for me!
But lupus is scary!
Sad.
Regards
Scary for you and everyone - myself included and I'm not suffering - here to understand as my daughter has it and trying to help her.
Skin rashes been a huge issue for us since the beginning and not under control as yet.
Seeing rheumatology and dermatology in the coming weeks - hoping they step things up a notch as current regime is not working.
Thank you for your reply - every bit of knowledge is gratefully received. x
Hello, I’m sorry to hear what you and your daughter are going through but it’s amazing that you’ve come here to try and get a better understanding, this is a great platform that’s really helped me make decisions when it comes to my own treatment. I was diagnosed in Feb but have been suffering just over 2 and a half years. I have SLE and was started on prednisolone to try and ease my symptoms and hydroxychloroquine. The plan was to be on pred for about 4 weeks but my bloods and symptoms showed that the combo I was on wasn’t strong enough and I was put on 100mg of Azathioprine too. I’m currently on 10mg of pred and each time I try to taper down my symptoms return with a vengeance so it’s clear that my current medication mix is very reliant on the pred. My Azathioprine was upped to the max I can have for my body weight and then I had a random spike in my bloods (I was in a stressful situation and clearly didn’t manage it well so I flared). My Rhuematologist has now suggested biological therapy - Rituximab - to be precise as he is worried that my symptoms are not being managed by the medication and are instead being masked by the steroids. He is also worried that my blood levels are showing everything is still very active and feels organ involvement could be imminent. From my understanding all cases that want to involve Rituximab in London (possibly the UK, not sure where you are) have to reviewed by the Lupus centre of excellence at UCL - my case has been reviewed and approved. It’s currently booked in for mid October however I am still undecided as to whether I want to go through with it. It is a very intense treatment and is given such it is not suggested lightly. The way it works is very much like chemotherapy in its method and there are a lot of potential side effects. I’m not in love with needles but I wouldn’t let that stop me from getting something that could change my life however I have to weigh up everything. Lupus is a minefield that is so individual. I know it can’t be easy to watch your daughter go through this but as everyone else has said be clear with your symptoms, have a list whenever you see your consultant because it’s easy to forget things in between appointments. If anything happens in between and you can’t get hold of your consultant, get it logged with your GP. Advocate for your daughter and encourage her to do the same for herself as unfortunately there is no cure as yet she will need to get used to making sure her voice is heard. I hope my journey has given you a little bit more insight, hopefully I’ve answered your question but if there’s anything else you’d like to know please reach out! Good luck to you both!
Thank you EeBeee - yes you have certainly helped fill in even more blank spaces with this understanding. I have a colleague who has colitus (presumably severely) as he is on Rituximab injections every few months.
I know it is a large step up, and by nature of this disease everyone's body is effected differently and responds differently. Sadly there is no text book to refer to with an exact course of action, wouldn't that be easy!! Lupus doesn't do easy.
Seems for my girl steroids are no longer having an impact, they previously would ease symptoms but every 4th week she stopped them it kicked back in royally. Now on staying on stable dose still not working (along with hydroxy & azathioprine) still running rife.
Just trying to get any info we can ready for next appointment with our list of questions and notes on progressing symptoms.
Thank you for sharing your experiences - hearing these really helps so very much in taking each step forwards, this forum is a saving grace for sure. X
In my experience (!), the NHS doctors have to try all oral medications first, the reasons being various but also importantly the cost. Both Rituximab and Belimumab are costly, the later being more so. So naturally they have to try to see if patients can manage the symptoms with far cheaper mediations such as Hydroxy or Prednisolone. I know that many doctors keep patients on Prednisolone for a very long term (such as 25 years on low 5 mg dosage daily). I couldn't handle it for a long term as I simply didn't sleep for years! Horrible, horrible.
They will prescribe biologics only when you cannot tolerate or don't improve with all other medications, I think. So naturally that takes some years!! I have gone through the whole lot. But I wish the doctor who tried all these on me had given more time on Hydroxy first. Because it turns out that really helps me a huge amount. He didn't. Strangely enough he only kept me on it barely 1 month and because I had suffered many side effects, he took it off. So we tried so many others with no success. After many years of suffering including a stroke, I am now on Belimumab and Hydroxy. Even Rituximab didn't suite me. But I still suffer from the side effects from daily Hydroxy. It is matter of which is worse, the side effects or the actual Lupus flare. So I have to live my daily life dealing with side effects of Hydroxy which doctors will not allow stopping until the day it ruins my cornea...all not a perfect picture. There is no happy balance, I am afraid. Sorry if this is not a good piece of information. But I send good wishes!
I’m on MMF and still taking 5 mg steroids although occasionally they get increased to 20mg with infection. MMF is my first medication.
Sorry to hear that your daughter is not responding. Go to clinicaltrials.org and get her in a clinical trial. New treatments are being developed as we speak and they are working! Check the latest data on CAR-T therapy. Best wishes and peace to you and your daughter.
so sorry for everything. Not a group anyone wants to belong to. The first med I was put on hydroxychloroquine, trashed my eyes. After that I was afraid to try anything else. I have been managing with diet and supplements. I have learned that if I eat too much sugar I will get mouth sores. If I eat processed junk food I get skin lesions. I use a liquid glutathione. I also use stem cell patches. I am on a a low residual diet. I recently added castor oil as a rub for my entire body. I also mix it with baking soda and apply it to my abdomen everyday. I am constantly finding more alternative treatments . I believe our bodies were designed to heal and that chemicals and pollution have taken a toll.
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