Hi everyone,
If you missed our Live Virtual Seminar, "Understanding Lupus Blood Tests" with Dr Arvind Kaul on Wednesday evening, you can now watch the recording in the 'Video on Demand' section at lupusuk-virtual.org.uk
You can now also register for our next virtual event, "Diet & Nutrition in Lupus" taking place from 6pm (GMT) on Thursday 25th February 2021.
Hi Hidden ,
You'll first need to register and log-in to the site. Once you're logged in, there is a menu on the left-hand side where you'll see 'Video on Demand'.
The site is closed for bew registrations😐. Will it be open again soon?
Thanks Paul, it was a very informative presentation. It provided an insight on how many rheumatologists are very rigid in terms of blood tests and symptoms. I know from personal experience my very first rheumatologist who diagnosed me with sle used to think outside the box and would look at the symptoms and the effects on my lifestyle. Current rheumatologist goes by what bloods say and is keen to get you out of the door even when I've been in a flare the response was bloods don't indicate a flare. Bloods don't pick up fatigue and brain fog!
I feel more assertive knowing what the blood tests mean and I am ready to stand my ground for my next appointment, whenever that may be.
Hi Hatelupus ,
I'm so glad that you found the seminar so helpful. I'm glad it has left you feeling more empowered and confident to stand your ground.
I can’t wait to hear this presentation! I agree completely that the effects of nausea, fatigue, and headaches have to be taken more seriously. Yes, the drugs have toxic effects but so does inability to work or enjoy life.
It is only in recent years - and input from a new neurologist who thinks outside the box - that I am allowed to take medication as needed.
I am unable to access the site. That should get resolved soon and I can listen to the presentation on blood tests.
Do you mind sharing how your first rheumatologist handled symptoms and if you were given more control?
Agree you will be able to be more assertive now.
The first rheumatologist actually listened to how the symptoms affected me. At the time I had a 7 month old baby, and things were very difficult. The joint pain was excruciating to the point that I was using crutches, headaches,fatigue and constant low grade fever were a regular symptom.He ran some blood tests,for my second appointment he discussed ALL the tests, what the antibodies did in terms of symptoms (the only consultant to ever explain this to me) and gave me options for my care. He did advise me not to have anymore children as there would some major complications (anti rho +) which in hindsight he wasn't wrong (ended up in ICU whilst pregnant)
He would make a care plan but he expected you to have major input. You were given options of which therapy to try so you were in control. It felt like you were part of a team trying to figure out what's best for you. You would give them details of your struggles, the Dr along with the nurse would try and find solutions that would work around you.
I think a lot of consultants go by the bloods and offer no alternative other than what they suggest. When I complained of fibromyalgia and chronic fatigue I was told I need to exercise,err I'm struggling to get out of bed and you want me to exercise. Ive lived with sle for 16yrs, I know how my body works however most drs think we're either hyperchodriacs or exaggerating our symptoms as the bloods don't indicate you're in a flare.
I really hear the difference. You were quite seriously affected if you were on crutches and your fatigue was probably intense. You are a perfect example of when a doctor has to look at the whole picture. I love your former rheumatologist’s approach.
As you said, you know what works, and your new rheumatologist should discuss the options and risks with you.
The blood test issue is huge! We with UCTD think it is just our milder illness. We have learned rheumatologists are strict (rigid, maybe) with medications whether you have classifiable lupus or not.
I am like you. I used to have constant low grade fever with rash and normal labs most of the time. Then I would feel great and get called to repeat hematocrit. Crazy, right?
If the drugs were so toxic, we would all be on mega doses!
Hi Paul , i missed the live seminar , so watched it today , I found this to be so interesting and answers so many nagging questions and answers I needed , appointments are always limited , and sometimes your told only the very basis of information if any at times , I have found this site a very useful tool in understanding more about my conditions .
You are so professional and genuine .
I feel less isolated with this very lonely ,painful journey .
Keep up the good work
🦋❤️
Hi Willow1414 . I'm so glad that you found the event helpful. It is definitely our aim to use these events to cover questions and topics that you wouldn't usually have time for with your consultants. I'm really glad that this site has been helpful for you.
I watched the seminar live and, though I had some understanding of the full blood count stuff, didn't understand any of the other blood test stuff, the major tests they do before diagnosis. I've never had any of it explained, don't know where I am within ranges or what aspects are better/worse than others. If I ask my rheumy any questions I'm effectively told I don't need to know, because he knows what he's doing.A few days ago I saw the rheumy nurse for instructions on how to use metaject, which I'm trying to see if it makes any significant difference before changing to mycophenolate. We got chatting about my medication - I'd never seen her before so she didn't know me - and I was saying that I'd really like to get off the prednisolone (it's badly affecting my mood which I only realised when it was last stepped up before Christmas - I'd assumed the lowness was all covid/shielding related before). I told her what people on here had said about reducing slowly, at say 1mg per month, rather than the 2.5mg every 2 weeks that I'd been told, and failed miserably, going up and down constantly. She was very understanding, listened and understood and said she would speak to the rheumy about it but that "he doesn't like being told"! She phoned me later that day to tell me he'd said no to the idea. I don't have any other options, living rurally, and now I'm a bit concerned.
Sorry went off at a tangent, like I do. Anyway, I'm going to watch the seminar again and see if I understand any more second time round. It was very thorough but, if anything, it made me realise just how little I know and understand about my condition.
It was very interesting. And the doctor was very good with how he explained regarding what is expected with the blood test.
Hi Hidden ,
To access the 'Video on Demand' section you will first need to log-in to the website. If you have previously registered for any of the events, these will be the details you used to sign-up. If you've not registered to the site, please register for the next event (you're under to obligation to attend) but it will then allow you access to the full site.
LUPUS UK Live Virtual Seminar - Getting the most from your medical appointments - 6pm (BST) Monday 10th May 2021 (World Lupus Day)LUPUS UK 2021 Supporter Survey - OPEN NOWJoin us in ONE HOUR (7.30pm GMT+1) for the World Lupus Day Virtual Quiz on YouTube LiveLUPUS UK, BBC Breakfast & the Virtual London Marathon
blood tests negative- what now???
