Hi all, I am wondering if anyone can help. I have been increasingly struggling with symptoms that I believe are Lupus for the past 4 years. My main symptoms are severe pain and swelling in my knees and hands (sausage fingers) as well as in other joints (but not as bad), a facial rash and UV skin sensitivity, nasal ulcers and tachycardia. It is also worth noting that I had severely low white blood cells as a child which went undiagnosed and rectified itself. My Mum also has an autoimmune disease. My blood inflammation levels always come back normal or slightly raised. I have had positive anti dsDNA results 5 times (but my consultant says not high enough, even though they are double the normal range) I have also had a single low positive anti-RNP. My pain is so severe that I am in agony every day (my consultant says lupus isn’t a pain condition). I am currently on Hydroxychloroquine (although they want me to taper this) and 15mg Prednisolone (without this I would be unable to get out of bed due to the pain - again they want me to taper these) and daily slow release and quick acting morphine.
My consultant is currently saying that he does not believe that my symptoms are caused by Lupus and therefore not willing to try me on any type of immunosuppressants or any other treatment for my symptoms. My symptoms are so severe that it is ruining my life and I would do anything to get a diagnosis or at the very least some proper treatment to enable me to reduce my steroids and pain relief.
Does anyone have any experience of any really good consultants who appear to have knowledge or expertise in working with those with Lupus who may not show all of the “a typical” symptoms? Or does anyone have any advice or tips on how to get the consultants to hear and believe you more. Fed up of feeling not listened to and not believed.
I am willing to pay privately and travel anywhere in the country (I live in Sussex) to try and get the right help with this. I really am desperate. Thanks in advance. Vicki
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Really sorry to hear this all sounds very difficult. It’s really such a barrier when you don’t feel heard and believed it’s a pet hate of mine with some drs. And often it’s as simple as whether or not you both ‘click’. Can you get a second opinion? I think there are several lupus uk centres of excellence on the lupus uk website might be worth speaking to a different dr. My rheumy was convinced I didn’t have lupus and I’m fact it ended up being diagnosed by a dermatologist before being agreed as lupus by the rheumy. Good luck I hope you get some relief from your symptoms.
Thank you for your reply. The Consultant has referred me for a skin biopsy (Lupus band test) but it’s taking a while. He was reluctant to do this but referred me as I was pretty much begging him. I am desperate for the correct treatment and can only get this with a Lupus diagnosis. I’m going to get another opinion. I was seen once at St Thomas’s after a blood test by GP came back ENA positive. The Consultant then just said that Lupus does not cause pain. From this point I shut down a bit knowing that it was going to be a waste of time. Was discharged from St Thomas’s . Do you have a good Consultant who actually listens? I’m after some recommendations. Is your Lupus under control now? Thanks so much for replying.
So sorry to read of your pain, diagnosis and Consuktant problems Vicki!. You've certainly come to the right place for help as so many of us can relate to your difficulties!.
Your symptoms coukd we'll be indicative of lupus , you've got family history of AID's and i don't understand your Consuktant not accepting your blood resukts as I've not managed to have anti dsdna be positive and yet have better understanding and symptom recognition from my Rheumy .it's all down to the individual Consuktant's attitude and oh boy it varies so much!. There's no one size fits all with these illnesses we can all come up with our own versions that need treating!.
I can see what yours is implying , Fibro , as you have such severe pain and so can I ask does Hydroxy help with the joints at all?. What does he want you to taper it down to?.
As to the steroids 15 mg daily is too high a dose to stay on long term because of the side effects!. I expect he said this to you. You've said they help you get out of bed so there's benefit there from them!. That's important as it proves inflammation!. What does he want you to taper those to?. Usually it's 5 mg now regarded as a safer daily dose!. You coukd just be very unlucky like me in having such stronger pain with your joints. What is important is proving these treatments work so your problems are inflammatory!.
You coukd ask lupus uk for a list of Consuktants in the Sussex area!. Another opinion might well be helpful from a more open-minded Consuktant!. There are so many who are not but it's possible to find the right ones!. I used to live in Sussex, whereabouts are you?.
Hope that's helpful and I wish you lots of luck for finding the right Consuktant!. It can be a long road but you will get there. Xx
Hiya. The consultant just sent a really vague letter to my GP (and copy to me) saying basically to taper. Not what to. I think he wants rid of me to be honest. The letter was not factually correct as in what I told him. The tone was very offish. Hence I’m Looking for someone else. Do you have a good Rheumy? Any recommendations? This group is really helpful. It’s the first time I’ve posted and I’ve been looking through old posts and replies. Gaining lots of useful info.
The steroids deffinatly help and the Hydroxy I do think does. I’ve been in this for 4 years tho since the very first consultant. From the research I’ve done I think Prednisolone and Hydroxy can lower blood results. ANA and DsDNA. Do you know this can happen?
Glad your finding this forum helpful. What did your GP say about the Consuktants letter and tapering!.Is your GP supportive because that helps so much. ?. I would think its the steroids to taper as Hydroxy you can stay on the dose they recommend!. Did your first Consuktant put you on these meds or was it this one?. Did he give you a diagnosis?. It might explain why he was offish as he may not have agreed with your first Consuktant's ideas!. It's good you say that both these medications definitely help as it proves you having an immune illness!. Steroids can mask resukts definitely and 15 mg daily is too high a dose to stay on!.
A word of caution about seeing too many Consuktants!. It can be difficult and I understand why you don't like this one but it can look bad on your records!. You might be able to work with this latest one if you taper the steroids and show him how bad you are.
I changed Rheumy's a few years ago and he didn't agree with my previous ones diagnosis and treatment. I had to spend nine years proving to him how much I needed them and he did change his attitude to me and ironically now I'm back on those meds !. I coukdn't change Rheumy's as coukdn't travel so had to work with him which took a lot out of me!.
I live in Devon so can't recommend my Rheumy dept but I used to live in East Grinstead not far from Worthing. You might well benefit from going to London to one of their lupus centres of excellence if you can travel but bear in mind if you like the Consuktant you'll want to stay so think about if you can go regularly!. Sorry about all the questions but it helps me know the background!.
I’ve not spoken to my GP about this letter yet. To be honest I just feel like they all think that I’m making it up. I don’t feel believed or listened to by my GP or Consultant. My GP was good but since the Consultants other letter saying they don’t think it’s Lupus/MCTD (a previous consultant diagnosed UMCTD with possible Lupus) she seems to think it’s all in my head (my GP) and that the Rheumy has to be correct. I feel like I’m fighting a losing battle to be honest. The GP is desperate to get me off pain relief and steroids. I don’t want to be on them either but to be able to reduce them I need a medication to replace them that actually stops this from happening to my body. It’s all complicated but I’ve been between so many Dr’s & Consultants over the past 4 years that it’s all just got ridiculous. (One Rheumy moved trusts, he was a locum, another one was really rude and arrogant towards me so I refused to see him again, Guys said Lupus does not cause pain and discharged me and this one - well..... utterly useless! The advice off this site is great though. I will deffo be doing my research and finding another (hopefully last!) Rheumy that listens and who will treat my symptoms. Were you 9 years without treatment? It’s bloody awful that people like us are having to fight with what little strength we have to get the correct treatment. Is your Lupus under control now? x
It's awful vickiR that you've had such a difficult time with Consuktants this last four years!. As I expect you've seen on here so many have had similar experiences, me included!. I have also found that gp's take their cues very much from Consuktants letters so it's hard when you get a rubbish one like you've just had. If I were you I'd try to go to a centre of lupus excellence where they are more used to treating the symptoms without the positive blood work although yours is better than mine!.
I have had to prove my need for steroids and other drug treatment twice now which we shouldn't have to but it can be the only way to get the Consuktants on your side!. You may have to reduce the steroids, put up with the symptoms to get bloods done and to show them how bad you can be. Steroids can mask bloods as well !. 9 years ago I was on the DMARDS and I had to come off as I was very poorly in hospital. I also had to reduce the steroids and they were the only drug I was on!. I managed to get down to 5 mg from 25mg and it was really hard but I did it slowly. A mg a month and then 0.5 mg a month. I became really unwell on 5 mg and suddenly my bloods showed something that made my Rheumy act as it was an inflammation marker . Now I'm back on all my drugs again with steroids at 5.5mg . Ultimate aim is to get off them completely because of the side effects. I've been juggling all this for 34 years and was diagnosed UCTD like lupus , like you were!. Luckily my CTD is much better on MTX!. Another point I will also say which is important is that the DMARD level of drugs are quite a step up in treatment because of the potential risks. Consuktants balance risk versus benefit with them and only prescribe when they have to!. You have to show them why they're really needed!.
Hope all this is helpful and you find a better Consuktant soon. There's nothing worse than not feeling believed. If your GP doesn't change you may have to change her too!. Good luck and keep safe. Xx
Consider the London lupus centre at London bridge hospital they have some very good lupus specialists from Guys, addenbrookes and others. Not sure whether they do face to face yet.
The other option is get referred to an NHs specialist in southampton, or london (guys/ UCH)
I’m thinking of trying Southampton or Addenbrookes. Have you had any personal experience of any of these? I’m just looking for someone to listen and take me seriously! Thanks for your reply.
Hi, No but lots of experience of london lupus centre and guys - both i would highly recommend. They got to my wife's diagnosis of Lupus SLE when she was atypical and other rheumys were baffled.
Is the anti dna test not definitive for lupus? I thought it was. What about other bloods? Ana? I would definitely find another rheumy and gat a second opinion. I’ve seen a few rheumys in my time and it’s really important to find one who listens to you and who you feel you like. Good luck x
That’s what I thought - about the DsDNA. Lupus specific. Mine was 72 with the normal range being 0-30 He says that this isn’t high enough? This has happened 5 times in the last 4 years! Do you have a good rheumy? Thanks for your reply.
So sorry to hear you have such a very poor rheumatologist Vicki...I believe you can have a private consultation with a lupus expert for as little as £150, and then ask for a referral back to the NHS...once you have a good consultant, you can throw the BSR guidelines* in the face of the one you currently have and tell them to have a read...dsDNA is indeed highly specific for SLE and if it's over the lab normal range, it's positive, there's no 'not high enough'...there's lots of very helpful info on getting a diagnosis on the LupusUK website
Fare well, stay safe, and let us know how you go xxx
Yep - I am definitely going to try and see someone privately. I don’t care how much it costs, I’m desperate! Having a look through all of the info online and going to put all it together and take my results etc to someone new. Thank you for the advice. I’ll let keep the group posted on how I get on. I really appreciate the support from everyone. Seems to be a lovely bunch of people on here! Hope everyone is feeling as well as they possibly can! x
Just noticed the link you sent. Had a brief look, it looks like it will be very helpful. About to sit down with a cuppa and read through it - thank you.
Yes, there's a table that lists all the investigations that should be done and another for counting categories to conclude it's SLE. With positive dsDNA and other visual signs (rash, ulcers) all it takes is counting to four. Really, it's that simple if there is tangible evidence. I recall well my diagnosing rheumy counting 1,2,3,4 from his notes and it took a couple of months to figure out what he'd done!
On ANA/dsDNA results, my lab adds a commentary to make it easy for doctors to understand as well as flagging up that's outside the normal range...mine says dsDNA: 'highly specific for SLE' and ANA: 'together with positive dsDNA, highly specific for SLE'
SO it's difficult how some doctors can be so ignorant...all the best with your new rheumy! xxx
I’m sorry but this rheumatologist sounds absurdly ignorant about Lupus and related connective tissue diseases. If an auto antibody is positive even once it should be enough along with symptoms, pain included, to diagnose SLE. Let alone 5 positive anti-dsANAs. I can’t advise but I’m glad you’re looking for a new rheumi. Best of luck 🤞🏻🌻
He really is shocking! The letter he wrote to my GP was nothing like how the conversation went over the phone. Unbelievable. He put I have ‘widespread pain’ which I do not have. I have pain in a couple of specific joints. Knees and hands. We all know where they’re going when they say ‘widespread pain!’ He also said the positive a DsDNA test was not remarkable or classed as positive even though it was double the highest ‘normal’ range. It’s like he’s decided that I don’t have Lupus and he is changing my symptoms/results to match his theory of fibromyalgia. I have felt so defeated but this group is giving me the positivity I need to carry on battling for the correct diagnosis. Thank you all.
So sorry to hear that. I think you are having the same experience as a lot of us have had. Lupus is so hard to diagnose. It took seven years with me, The doctors were all very good in spite of the long time take, you are on the right treatment I tried the other drugs and had to go back on steroids in the end. Have been on them for years but thankfully stabilised at last on low dose.
Yes, I read about the long time it takes people to get a correct diagnosis. Shocking really that so many people are left like this for so long. That’s all I want. Some treatment that works. The Prednisolone takes it off to some degree but I can’t stay on this forever. Do you have a good rheumy?
Been there and was met with ‘Lupus doesn’t cause pain’ from that point I shut down a bit knowing that I was wasting my time. Think Southampton or Addenbrookes is worth a go. Who are you under? Any good?
That's a shame. There were some good consultants there when I went but that was well over ten years ago now. I go to the Kellgren Centre in Manchester, which has been great but a bit far for you!
Yep - just a little! But you know what, if I was going to receive the correct treatment I’d travel the world! Sounds like you’ve got it under control and have a good rheumy. It’s just shocking how long it takes for a lot of people to be diagnosed.
Hi sorry to hear you are struggling.ask for a second opinion you are entitled to do that or maybe consider asking for a referral to a specialised unit like the one at guys and st Thomas.id say lupus was painful.....whilst my joints dont swell i get pain in my hands,feet,elbows,lower back and lungs.its a fight to get a diagnosis mine took 5 yrs but keep going .big hug x
Hi. I went to Guys and St Thomas’s a few years ago. That’s where the first thing he said to me was ‘Lupus doesn’t cause pain’ I was referred there by my GP as ENA panel came back positive. I have thought it’s Lupus for a long time. I think that because a couple of consultants have said no it’s not. Any new Consultants feel that they can’t go against them and say otherwise. Feel totally stuck now. Thanks for your reply. Do you have a good rheumy? Is yours under control?
Hi. I don’t have Lupus but I have Palindromic rheumatism. It makes my joints swell for no apparent reason.
It took me years to convince my GP to sent me to hospital. When he agreed I wrote a detailed description of all my symptoms as they seemed to change nearly every day. As soon as my consultant read it he knew exactly what I had.
I even drew around my fat sausage hands.
I’m now on methotrexate as I became allergic to hydrox....
So maybe look up your symptoms. See if there the same.
Hi all! Just wanted to say thank you so much for the advice! I paid for a Private Consultation at London Bridge Lupus Centre. And on Tuesday this week after 4 years of fighting for the correct diagnosis and treatment - I got it! Finally, finally I feel listened to and believed - I have some hope. He has recommended starting Methotrexate so fingers crossed that it works. The advice you all gave me really spurred me in to carry on fighting. So thank you. This support group really is amazing. Hope everyone is as well as can be. x
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