hi lovely people, I was wondering if you could give me any advice. I’m relatively new to all of this and I’ve had a very bad experience at my last hospital.
I was misdiagnosed most of last year with Complex Regional Pain disease. My rheumatologist wouldn’t even consider an autoimmune disease. Anyway in November they saw inflammatory arthritis on a scan and put me on Hydroxychloroquine. My rheumatologist called me up a week later saying she had tested my blood in a different way (immunoflurescence) I think.. and I had a positive ANA. She started me on Methotrexate. 3 weeks into Methotrexate my hand swelled again needing steroids (she did not see this my GP did) and she then said I don’t have an autoimmune disease it’s CRPS again .. she said my ANA was weakly positive and I’ve got 6 months on my meds that’s it. I’d had enough by this point and I’ve changed rheumatologists.
I was seen on the 4th March by my new hospital (who are very nice thank goodness!) and they are keeping me on my meds and keeping me in the MTDC.
They did a round of new bloods but I’m still waiting for 4 of them to come back. I haven’t had the results for ANA, ENA, Lupus anticoagulant or ANA immunoflurescence. Do these take longer? From what I can see I haven’t ever had some of these tested at my old hospital unless they didn’t give me the results.
I have joint pain and swelling, hair loss, malar rash, mouth ulcers, sun sensitivity, angiodema, Uticaria, chronic tendinitis/tensonyvitis, inflammatory arthritis, temperatures, night sweats.. reynaulds and I’m currently waiting for capillography as my hand turned blue last March. I’ve been casually ignoring it all for most of my life putting it down to other things. I’ve lost so much quality of life since the vascular changes, the fatigue and brain fog alone are very debilitating. The last rheumatologists have cast so much doubt over everything, I guess I just want answers now as this is affecting my life so much. But I know it can take years to diagnose. Guess I just wanted to vent — but if anyone knows about the blood tests above I would be grateful for any advice. Thankyou
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Tonkie
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Hi, thanks for the reply. I’m just struggling to understand my result. It’s written as ANA Positive 100 Nucleolar. Does that mean anything to you? I haven’t been given a titre like the ones above. I’m still waiting for the bloods from the new hospital maybe those will be written better. I have got all my other results but haven’t got any of the ANA/ENA/LUPUS results, do these take longer? Thanks again
Maybe it is a different dilution factor. In earlier reply, the linked page has info on Nucleolar.
Some rheumatologusts are using the 2019 EULAR /ACR SLE Classification criteria, designed for research (rather than more than 4 of 11 symptoms referred to here and used previously).
The 2019 Classification criteria requires a positive ANA as an entry criterion.
It then only scores one symptom, on the left side of the table.
If score is not 10, then extra points need to come from a blood result on the right side of the table.
Other connective tissue disorders have their own classification criteria.
If they are not met, some of us are diagnosed with Undifferentiated Connective Tissue Disorder (UCTD).
We then wait and see how symptoms develop and blood results change, if redone.
However different centres use different tests, sometimes with different cut-offs. There is much that is not known at the moment. Test results can change over time too.
Where I live they don't report the titre, so I was just told it was positive with "cytoplasmic speckled" pattern. My rheumatologist said it's more helpful for them to have the titre, but they just don't report it here at all. I've got no idea why, but it doesn't seem to have affected any of the treatment since.
thankyou that has been really helpful. I wish my rheumatologist could have explained it like that. I’m in the UCTD category at the moment but I have no idea what her result means. I’m hoping the bloods from the new hospital will make more sense. But my new rheumatologist said they could come back negative now but not to be alarmed as they can see I’ve already had a positive. I’ll check the link out Thankyou.
Hi Tonkie! Immunoflurescence (Hep2 cells-human cells-IIF) is a manually done method, that is why it takes longer to come. Mine took 3 weeks. ELISA is an automated method, that is why the results normally come day after. Labwise, they are two different methods. IIF is more expensive and time consuming but also more sensitive one. If ANA has pattern, the following test to check will be ENA panel of antibodies (also with IIF). The titer is then determined as well. See the link below under "ANA - ANTINUCLEAR ANTIBODIES". The interpretation of the results will still depend on the opinion of your rheumatologist. I have veryyy similar symptoms to yours, I am UTCD at the moment as well and on 400mg of antimalarik. Know how you feel, I am sending you much support xxx
I think I too will fall into your category I score 17 but negative ANA at hospital test so seeing rheumatologist on 27/3 as I’ve already had pleural involvement now the membrane of my heart is involved. Let’s hope we all get some news and put on right path to diagnosis and treatment.
Hi Wendy! I hope rheumatologist can offer you some good news. I would like to ask mine (to be seen in July) as well, I had some weird coughs that come and go, if my lungs could be checked. Everything just takes a lot of time be done and is so overwhelming. Good luck to you and much support xxx
It’s the breathlessness that’s most debilitating for me currently, I’ve just had to stop anti inflammatory medication hospital put me on because they severely affected my stomach and now my breathlessness is starting again so waiting a callback from doctors to see what can be done. I’m hoping rheumatologist may suggest something but really they should speak to my gastroenterologist but they never do and a lot of medication irritate my stomach which can cause pancreatitis. Hope you get sorted hun, it’s the waiting that’s the worst.
It’s nice to find people in a similar position, although I’m sorry you’re struggling also. I have lung involvement and suffer with pneumonia regularly. It has left me with daily pleurisy pain, but nobody seems to care about it 🤷🏼♀️ I’m not sure whether I should be trying to get referred to all the different departments? It’s all so confusing and you’re right waiting is the worst! Currently been knocked out with Sinusitis again but thankfully I have an ENT referral pending. I wish I could take anti inflammatorys but it irritates my asthma. I really hope we all get some relief soon. Really fed up of health management! Xxx
Never had a breathing problems, this sounds very frustrating. My cough was annoying, I can't even imagine how much breathlessness affects you. Do you have any gastro diagnosis as well? I go private to rheumatologist (2x/year) and he normally asks NHS to do blood for me. On my recent results (increased thrombin time but negative lupus anticoagulant), my GP contacted him directly to help with result interpretation. So I am happy and grateful that they established kinda connection. Also, from now if I don't understand or know, I ask. I am trying to lose that fear of asking, in a respectful way of course. What I wanted to suggest maybe is if you see private gastroenterologist once, he will probably contact your NHS specialist on what kind of medication you could take to avoid pancreatitis. But of course I understand private doc are expensive and if you need to go more then twice per year it gets crazy expensive. Keep fighting Wendy <3 and same suggestion goes for Tonkie, stay determined <3
Hi Tonkie.Just to add that given your urticaria and angioedema symptoms, it might also be worth asking your new rheumatologist to run a blood test for the anti-C1q antibody. It can quite easily get overlooked and is not a test that GPs are able to run.
I was diagnosed with urticarial vasculitis syndrome when I came back positive for this test. Many of my symptoms, particularly the angioedema and urticaria, match yours.
I also had low C3 &C4 levels before treatment with Hydroxychloroqine, so also check they have tested your bloods for complement levels.
This is really helpful Thankyou. Im currently waiting for thermography and I thought they might see Vasculitis as my hand is blue and many rheumatologists look at it with alarm and say it’s not Reynaulds. I’ll read up on the blood test you mentioned and see if my new rheumatologist will do it. I don’t think anyone has done that one. I’m not very assertive and I find it hard to ask doctors for things. Thanks again for your advice x
Even those if us who are ordinarily assertive struggle to be so when sat before a medical professional feeling absolutely dire and worrying about being disbelieved or trivialised.I found it helpful to list any questions and key symptoms on a sheet of A4 paper and either read from it or give it to the Dr.
Brain fog always bad for me in a consultation and as well as the paper aiding memory, you can also pass it over and ask it to be put with your medical records. Then there is a paper trail that might encourage otherwise reticent medical professionals to actually do something!
Thankyou this makes me feel much better. I struggle to get across what I want to say because of the fog. My memory is so bad now. I think I’ll have to take paper with me from now on. Was it the vasculitis causing your angiodeoma and hives? X
I think this vasculitis syndrome is the cause of the angioedema and hives, but like you I struggled to get answers and further treatment from the rheumatologist who diagnosed me with it and associated inflammatory arthritis.The rheumatologist has never acknowledged the angioedema but a specialist looking at my eyes at Moorfields said the swelling was due to the anti-C1q antibody. The level of that antibody is within normal parameters since the Hydroxychloroqine, but the facial and eye swelling has continued to grow steadily worse.
I've had less hives on my body, but have gone on to develop periodic facial rashes that weren't there until last April (I was diagnosed 2019) and almost daily burning of the facial skin even when the rashes aren't visible. So the Hydroxychloroqine alone hasn't been sufficient to control the disease.
My neurologist, who retired suddenly 2 years ago, thought I needed to be on low dose immunosuppression (mycophenalate) but my rheumatologist ignored him and refused my requests to try it. Not good practice!
I've recently changed rheumatologist and am starting a 3 month trial of steroids soon, then mycophenalate depending on how the steroids help (or don't).
You might find this vasculitis site helpful, I did, and they have helplines you can ring staffed by absolutely lovely people. John mills was the main guy, but sadly passed away last year.
Thankyou Hoofprints for sharing your experience. This has been not only helpful but very comforting as I don’t know anyone else who suffers with Angioedema. It started during the pregnancy with my first son. My face was blowing up and I ended up getting stuck on steroids for 5 months as each time I weaned off them my face would blow up again. That pregnancy ended in Fetomaternal Hemhorrhage. My son lost 70% of his blood into me. Thankfully he survived (most babies don’t), but he has cerebral palsy now. It’s a very rare pregnancy complication and my hospital get 2 cases a year usually caused by car crashes/blood incompatibility. Neither of those happened in my case. However, recently I found a link between SLE and fetomaternal hemhorrhage when you are not treated. I went on to have two miscarriages afterwards also. All of this time I thought that pregnancy triggered a lot of allergies but now looking back, I think I’ve had an autoimmune disease for quite some time. I’ve had joint pain since my teens and always been fobbed off by GPs. I was having steroid injections into my thumbs in my twenties as I couldn’t write for Uni. I developed Osteo in my feet at 25 because I have a lot of issues with the tendons in my legs and walk funny. I’ve had terrible reactions to the sun since I was a child, with huge horrible blisters no matter what I do, huge hive like responses all over my legs.. my hands have been swelling up for years I don’t even remember when it started, and I just assumed it was Osteo too.. just been so stupid and ignorant. But the last year, since my hand turned blue, I’ve noticed a huge change in my joints. I’m freezing all of the time and I’m struggling to move. They’ve tried to get me onto vascular meds but I’ve reacted (I’m allergic to all antibiotics now too bar one) .. they tried Viagra too but I had two bad reactions and ended up in hospital bleeding from my bowel the second time. There’s just so many problems and I don’t know where to begin to fix any of them. My family need me and I feel so useless, the smallest task wipes me out now. I don’t know what’s happened to me. My mum is about to have a hip replaced and I can barely look after myself most days. And when I push too hard I ended up with either pneumonia or sinusitis and a 40 degree temp to boot!
I am so so sorry for this huge random rant. I’m just so fed up with it all. Especially the last 7 years, every family occasion has been ruined by either infections or swelling or pain. My partner has to give me so much support now and he’s struggling.
Thankyou for the information, I am willing to try anything to fix some of these issues I’m sick of being so limited and having to hide away all of the time looking so diseased. Like you, my rheumatologists didn’t seem interested in the skin stuff.. only the psoriasis on my scalp really. I’m sorry you’ve also come across communication issues between departments. I really hope the new meds give you some respite from it and Thankyou so much for the link I’ll check it out now. I didn’t even know there were helplines and given the length of my reply I think I do need to talk to somebody 🙈
I just wish this capillary testing thing would come through. I’m being sent to a sclerosis expert or something? But I’ve been on the waiting list for ages and not heard a thing. How did you get Vasculitis diagnosed? Was it just by the blood test?
Sadly because they misdiagnosed me with complex regional pain for 8 months by the time they did find the arthritis and believed me it was an autoimmune disease they weren’t really interested in doing any advanced immunology tests. They just threw Hydroxy and Methotrexate at me and that’s it. They have helped with some swelling and pain. But not taken it all away and I’m still very stiff and struggle with how cold I am all the time.
Anyway sorry again and thanks for letting me vent ❤️
My goodness you have been going through it- I am so sorry. Don't ever apologise for expressing your feelings. Just check out the posts on this forum, mine included, and you will see how we all feel overwhelmed at times. It's normal trying to live with these conditions, but things can get better and more manageable. I just want to say how sorry I am that you have suffered a very traumatic pregnancy as well as two miscarriages. It's hard to make sense of what we suffer, but what is certain is how wonderful it is that your son is here - he made it against the odds and thats to be celebrated.
I suffered a silent miscarriage and am convinced that this undiagnosed illness was implicated. If ever I needed more proof that we know our bodies better than drs, it was when I sensed 'i wasn't pregnant anymore' - those were the words that entered my head suddenly, no physical symptoms other than brief and fleeting breathlessness.
My GP however, was adamant the urine/blood tests showed otherwise and that I was just was worrying (how often was I treated like that). When I took myself to A &E though a scan showed there was no heartbeat and my world shattered. It was an early miscarriage but what I learned was that it makes no difference to the enormous grief you suffer - I'd imagined a whole baby, a whole child, a whole adult and a completely different future. So I feel your grief.
I'm no doctor but wonder if you should (if you have not already) been tested for anti-phosoholipd syndrome (APS)? It can be implicated with lupus and with miscarriage and can cause, I think, small clots. So worth getting checked.
My vasculitis was diagnosed by blood tests - anti-C1q antibody, plus low C3 & C4 complement, together with my symptoms, including the urticarial rashes. It's confirmed by skin biopsy also.
If you look at the vasculitis website you will see that there are lots of different types of vasculitis and that the blood tests/findings are different accordingly.
Also there are different treatments - different people, not just different types of vasculitis, respond to different treatment approaches. Similar with arthritis and lupus. So there are other things to try besides methotrexate, but getting a more precise diagnosis, or at least being able to rule out some things definitely, would help focus the right treatment.
Is it sclerosis or scleroderma you are being referred to a consultant for? Do you know which hospital/specialist you are going to see? I would chase up the referral given your worsening symptoms and caring responsibilities. I know it's hard to be assertive when feeling this ill and depleted, but dig deep, ring those helplines and take whatever help you can, on a practical level too.
The charities I've mentioned might also be able to offer support to your partner. My partner gets very frustrated and stressed at times because he can't fix me, and he has seen how badly I've been treated by some of the medical profession for a very long time. Men tend to like to mend things - I try to distract my man with DIY or practical tasks so he can fix those! 😀 Our bodies aren't so easy to fix, sadly.
It sounds like you have had an autoimmune disease from a young age. Unlikely to have been osteoarthritis in your teens and twenties! There are others on this forum who have been similarly misdiagnosed from an early age, and one lovely lady whose parents decided not to tell her about her diagnosis for a long time. Maybe she'll pop along soon and be able to share some advice and experience. If not, I'm sure there will be others who do.
As regards the angioedema, there is a man at The Royal London Hospital who specialises in it, although I can't remember his name right now. I think he has found a form associated with the anti C1q antibody and I may seek a referral with him if the current treatment plan doesn't help. I have not been diagnosed by my rheumatologist as having it, but clearly Moorfields eye consultant was familiar with it and confident that was the problem.
By the way, the very clever rheumatologust who found the antiC1q antibody very nearly labelled me with M.E. and fibromyalgia again, and surprised himself when he found this antibody.! It's so easy to get stuck wythe wrong label!!
Your not ranting, your sharing, and this is how we all learn, and how we get to take care of one another. Don't give up 💐🍀
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