Hi everyone, I have an appointment on 6th June at the CTD clinic and I'm certain the subject of further treatment will be brought up as this was briefly addressed at my last consultation. I was given an intra muscular steroid injection and told that if this was helpful, Azathioprine would be considered. My question is whether anyone can help with what questions I could maybe ask about this treatment option so I can make an informed decision and also has anyone decided against immunosuppression and how do you manage your symptoms otherwise? I do feel more and more physical symptoms are beginning to impact on daily life and I'm not sure how to proceed and what the risk of refusing immunosuppression at this stage would be on the progression of disease? I have no current organ involvement although I am still under investigation for PBC liver, however, I've been told this is not connected to UCTD/Lupus.
It’s difficult to comment specifically as the discussion will hopefully be personal to you.
What I would say about organ involvement is it doesn’t send an e mail in advance advising you it’s going to happen. My disease has damaged the small ( and large ) blood vessels in my heart, I didn’t know that had happened until I developed angina. There were no warning signs and I thought my disease was well controlled because I felt ok and my bloods were good.
Predicting disease progression is tricky, mainly because our understanding of SLE is poor. My Father died of PBC related complications aged 62, his liver was ok but the disease had had a profound effect on his bowel and kidneys.
I very much hope that you will be given the time and space to discuss this and make a decision that feels right for you.
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Hi Tynemouth, I'm sorry to hear about your father. I didn't realise PBC affected other organs, although I do have an enlarged spleen which I've been told is not related to Lupus. I understand your comment regarding advance warning of organ involvement, it's more a case of understanding whether at this stage it would be necessary for immunosuppression given the side effects and weighing up the pros and cons. Whether to start treatment to prevent or a watch and wait policy as I'm constantly told by my gastroenterologist. I am concerned it may have an effect on my liver also. Some questions to ask at my appointment.
Many thanks
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He died 17 years ago and the frustrating thing is that the treatment of PBC hasn’t advanced very much in that time.
His version of PBC was atypical in some respects although liver disease is well known for causing issues with both the bowel and kidneys, with the benefit of hindsight he had a form of what we would now call intestinal failure.
One word of advice, from a Dr’s perspective it can be frustrating if a patient comes to them with a list of symptoms and then doesn’t want the treatment for those. You have stated that more and more physical symptoms are starting to impact on your daily life, how do you propose to manage these without treatment? I suspect that might be the crux of the matter here.
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I understand what you are saying about Dr's, symptoms and treatment. I was asking for advice before my appointment and asking if anyone had decided against immunosuppression. The CTD doctor said it would be an option to continue with steroid injections or try Azathioprine so I will ask them about this choice at my appointment. I am new to all this and still finding my way. Thank you for your comments.
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Don’t think I got the tone right with my last comment. The problem is that we all come with bias, mine is that I struggled for 4 years to get a diagnosis and came to harm as a result. I can’t help but wonder if things would be different if I was given evidence based treatment sooner. Please read my comments with an understanding of my bias, I hope that your appt is everything that you want and need it to be.
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I understand, everyone's journey is personal. Thanks for wishing me well, I hope you are as well as you can be also 😊
I was told Aza would be the next treatment after hydroxychloroquine - and was offered it on the basis of doubled dsDNA only, no other symptoms. I declined because the risks would outweigh the benefits. The SLE guideline recommends methotrexate, plus steroids, if needed to control a flare, for moderate SLE. You should be offered counselling (I was told I'd see a nurse for that) before Aza...but as Tynemouth says, it very much depends on your circumstances xxx
Hi eekt, I agree about risks and benefits. On my last consultation letter it mentions a BILAG score for disease activity, have you heard of this? My scores were D's, C's and 0's. I'm wondering why they are considering Azathioprine if the score is low 🤔. Starting to see what questions I might need to ask now! Are you on any treatment at all now? X
BILAG is akin to SLEDAI, though SLEDAI only measures NEW symptoms, not increase in existing symptoms...they're both an approximate measure of disease activity...my rheumy suggested Aza because he's a bit a dim and thought Aza would make him feel better (he's of nervous disposition and claims-aware)
Aza seemed to have been the go-to drug before the SLE guideline came out (the locum diagnosing rheumy 2015 gave me a leaflet on it saying it would be the next step after HCQ) BUT seems from the guideline methotrexate has more success and fewer side effects than Aza...as I told rheumy when he proposed it, 'I could die from a cold' and his response was, yes, we have some on the wards......the second time was when the deadly flu was going round, and when I said that, he said yes, you're right GRrrr...I was working in an open-plan office with 500 people in at the time, with the chronically healthy off work with viruses so often a new cleansing policy was declared!
Have a look at the treatment guidance (Table 7*) in the guideline and show it to your docs....maybe if it looks like somethings brewing they could consider a pack of emergency steroids to have on hand till you get to a doc if it blows up, plus an urgent appt pathway for mXT jabs, rather than a toxic drug as a prophylactic
I had grotesque reactions to HCQ but I'm very, very lucky to be more-or-less in remission medication-free...just the odd few days of wipe-out mini-flare now and again, but for me, I'll go for that rather than meds to be on the safe side as I seem to be hypersensitive to pharmaceuticals xxx
Haha (he's a bit dim 😂). Thank you so much, you always provide such helpful information and links. I would feel far more comfortable with what you have suggested, in fact my GP has said she can do the steroid injections if needed with consent from Rheumatology and the methotrexate sounds like it would be a more reasonable place to start if needed. I'll discuss all this next week and see what happens.
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