Hello all - I'm new to the lupus section of health unlocked. I'm a 58 year old female. In 2016 I started to experience oral pain, numbness and tingling in my fingers, cramps in my calves, raynauds, fatigue brain fog, and constipation. These symptoms were gradually joined by many others, including joint and muscle pains and blood tests showed low C3 and C4, intermittent neutropenia, and low iron. It became clear that I was not absorbing oral iron properly and I received IV iron three months ago, which has raised my iron and haemoglobin and has made me feel moderately improved. I was recently diagnosed with H Pylori which was treated with antibiotics. It is possible that the H Pylori was instrumental in my iron deficiency. Time will tell. I also have chronic gastritis, chronic refractory oral thrush, and experience pain in my joints and muscles. When I was first tested for antibodies in 2016 I was negative for all, but recent tests have returned positive for ANA and also for RNP antibodies but not at very high levels. Prior to 2016 I was a very fit and healthy person who attended the gym daily. Since 2018 I have been unable to exercise properly and I have gained 3 stones in weight. Since the iron infusion I have become energetic enough to return to the gym, and am slowly losing weight, but I can't say I am anywhere near as energetic as I used to be. I am under the care of gastroenterology and rheumatology and was prescribed omeprazole and hydroxychloroquine over the past six months, however, I can't tolerate these drugs. They make me feel very nauseated.
In all honesty I am less than thrilled with the care I have received. I know that there are a lot of unknowns about autoimmune diseases, and that there is a lot being discovered all of the time, but it seems to me that my specialists have no idea how to move forward, or what to recommend.
After waiting for three years, I have a first appointment with an immunologist next week. Can an immunologist do anything for me? Can anyone advise me as to what I should be asking for during this appointment?
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Ophelia1
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Ask if there is another brand or smaller dose of hydroxy so your body could adjust to it slowly. Also make sure to take it after a meal of you try again.
I’ve never seen an immunologist despite having asked due to complex immunology profile. So can’t advise on this I’m afraid.
All I can tell you is that I share many of your symptoms and have done for about 10 years or more. I’m diagnosed with Overlap CTD - Sjögren’s predominant (diagnosed by sicca, lip biopsy and raised immunoglobulins A and G) +ANA and a very rare scleroderma antibody called U3 RNP.I have Raynaud’s, Erythromelagia, small fibre neuropathy, hypothyroidism and hypertension and severe Gastroparesis secondary to my overlap.
I think the general consensus is that the nearest my symptoms and signs all point to MCTD or even Sine Scleroderoderma (scleroderma with no outer skin involvement) although I do have the red capilleriary spots on face, neck and hands.
I actually think if you have ANA and RNP and symptoms of CTD then it’s not too important what the titre. I couldn’t tolerate any of the disease modifying drugs including Hydroxichloraquine so am on the maximum amount of Mycophenolate now and trying various devices and drugs for my dysmotility. My rheumatolgist no.8 is lovely and pretty thorough and helpful and same goes for dermatology but the rest, especially gastroenterology and colorectal - have been less use than a chocolate teapot 🙄x
Hi 282523 - Thanks for your reply. I have been very disappointed in the specialists who treated me over the past four years. I know I'm far from alone in this. I'm not disappointed that they haven't been able to 'cure' me. What I'm disappointed with is the tendency to discredit and demonise patients instead of listening and trying to help. It became clear to me quite soon that I was very much on my own. Disappointing.
For me it’s been a lifetime (I’m 58) of being fobbed off really although my status as an autoimmune patient has never been in doubt.
The gall of some doctors I’ve seen is that once something does show rudely positive in imaging of blood work - they suddenly pretend that they always knew it might and expect me to trust them again now that it has shown up more obviously in my bloodwork. And yet they were the ones who almost discharged me?!
Ugh honestly we can reach the stage where we know more than our specialists and they know it and then start asking us to lead them.
And they really is a scary reality - especially where it comes to prescribing heavy duty medications, potentially risky investigations etc. I’m often left feeling like a self harmer when a toxic medication or surgical intervention doesn’t work or actually does harm. There’s an implication that I was the one who asked for it when actually I possibly suggested it and they enthusiastically concurred!
We need our specialists to be experts in their field and to have read and understood the latest research on our conditions so that we can both weigh up risks and make decisions together.
But NHS shortages and the pandemic sadly mean that even the best doctors have now been spread far, far too thin and rely on us to have become expert patients - which is a sort of abdication of their responsibilities I feel. I mean I may be an expert in my own personal stuff due to living with it 24/7 - but I’m not medically trained, let alone a consultant!
Me - I’m too convincing a patient to be disbelieved now - apart from by myself. It’s a weird old world. X
Hmm the tough reality and especially since the pandemic, one is being tossed from one consultant 's team to the others without prior notice or explanation ?? Hmm God help us
Possibly they could do more specific auto-antibody tests outside those already tested. IgM, IgA as well as IgG . They could also look more carefully at Compliment and what is happening there. 'Classic' and 'alternative' pathways - stuff like that.
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ALERT on medical records so we get the correct care if admitted via A&E - please ask for this!
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