Bloods sent away to test for Lupus. Been put on Pregabalin. Worried about Sjorgens. Any advice?

Hi everyone,

Its been a while since I posted- my last post was that I had been sent for generic blood tests, which came back with vitamin D deficiency and I had slightly raised liver enzymes.

A liver profile test was then done which showed everything as normal.

However, I have had terrible pain in my back and feet all over the Xmas period up until now, constant mouth ulcers and a flare of the rash on my face. I went to the GP last friday and demanded autoimmune blood tests as the next step, as I've had enough.

He was very sympathetic about getting to the bottom of this and I think having a book listing my symptoms and flare ups made the difference. He has requested the following:

- C Reactive Protein - Connective tissue ANA screen - Rheumatoid factor - Coeliac (Tissue transglutaminase IgA)

I will get the results next Wednesday unless the hospital contacts me before then.

He also prescribed me with 2 x75mg/daily of Pregabalin for the pain and anxiety (I am off work until 7th February and only getting statutory sick pay so it's been a stressful time) but it doesn't seem to work very well for the pain. Was anyone else prescribed this for pain? How did you find it?

He has suggested that if the results come back negative then I have Fybro instead. I'm not sure what I think about that- I belive I am suffering with Lupus and Sjorgens. I have every nearly every symptom. I'm not sure what to do if the Ana doesn't show.

How would I go about getting tested for Sjorgens too? I have a constantly dry mouth no matter how much I drink, gritty dry eyes which my optician picked up on and receding gums. I didn't mention this to my gp as I felt I was pushing my luck with my 10 minute appointment as it was.

Can I still request a referral to a Rheumatologist if my results come back negative from the bloods?

Thanks in advance guys 😊 x

12 Replies

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  • Hi Nat , i have primary sjogrens and i have been taking pregabalin for muscle pain-it didn't help my joint pain so much , but it has helped the muscle pain . I increased very slowly to 100 twice a day and ive been lucky as I haven't noticed side effects. I also take plaquenil and i am on second course of rituximab. In answer to the rheumy referral , the answer is Yes ask for an immediate referral as it the only way to get a proper diagnosis. Wishing you all the best, I hope you feel better soon 🌷🌷

  • Hello nat

    Am glad your gp is being supportive & working this hard on your behalf...but those symptoms are hard to bear, I know

    Can't add much to weathervane's reply...but maybe this link to a popular recent discussion here about diagnostic criteria could help:

    healthunlocked.com/lupusuk/...

    This link makes it clear that official diagnostic criteria include blood results as much as clinical signs & symptoms. Some gps & rheumatologists don't seem to be as aware of this as they could be πŸ˜‰

    Am sure others will reply with more re official Sjogrens diagnostic criteria, but this link has helped me:

    hopkinssjogrens.org/disease...

    There is also some good stuff to help with self assessment & appt prep on another website..I may have given you these links before, but, in case not, here they are:

    you can download a v useful lupus checklist PDF:

    usinlupus.com/tools/lupusch...

    and also an appointment prep guide PDF:

    usinlupus.com/tools/appoint...

    Both of these aides have been equally helpful re my Sjogrens and my SLE consultations

    Please let us know how this goes

    πŸ€πŸ€πŸ€πŸ€ coco

    PS...hang in there...so far I'm seroneg for both SLE & Sjogrens, but, even so, am diagnosed with both because my case meets other official criteria and has responded vvvv positively to SLE & Sjogrens treatments since these began 6 years ago. really expert immune dysfunction & connective tissue disorder consultants tend to be more ready to make provisional diagnoses while starting the treatment process...then they gradually refine diagnoses as they learn more about your version of autoimmunity over time

  • Hi. Firstly I'm sorry that you are struggling. I'm not sure which antibodies your GP will have taken beyond the first traunch - RF, ANA etc. There are more specific autoantibodies for RA, Lupus, Sjogrens and Scleroderma. I think usually these are requested by a rheumatologist. It's only if these first ones are positive that the next panel is ordered - called ENA. If everything is negative and your CRP isn't high (this measures inflammation in your blood) then they may well try and tell you that you have Fibro and Pregabalin is all you will be offered. The only way to test for Sjogrens with negative bloods (and usually the ANA or Rheumatoid Factor have to be positive even in seronegative Sjogrens and Lupus) is by taking a biopsy of your salivary glands from inside your bottom lip. They will look for clusters of lymphocytes destroying your salivary glands - if there are enough of these then Sjogrens is conclusive - (but not specifically primary or secondary). So if your eyes and mouth are very dry they should be treating these topically now anyway with good preservative free drops and gels and special toothpaste etc. This is important!

    And it's worth knowing that most people with Sjogrens take years to get a diagnosis unless absolutely positive bloods or lip biopsy - and even then very few qualify for treatment beyond the Fibro treatments and Hydroxichloraquine. So many decide not to bother with lip biopsy for this reason.

    I had it done last year and it was a very clear positive but then I was previously diagnosed with seronegative RA and had very high CRP and ESR so they knew something inflammatory was occurring - and my ANA is clear positive now.

    See how your bloods come back and if negative you could request a trial of Prednisolone oral steroids to see if it helps as this method is sometimes used to distinguish between Fibro and a connective tissue disease. I hope you get clarity from your bloods and a referral to a rheumatologist. Let us know how you get on and best of luck.

  • Hi everyone,

    Thank you all so much for taking the time to reply and share your knowledge with me. It's a such a long journey to get answers and it's quite complicated too.

    Unfortunately my blood work has apparently come back within normal parameters, or so the Secretary told me yesterday when I called for the results.

    I feel disappointed- of course I don't want there to be something wrong with me, but at the same time something is definitely not right- I feel like I'm trapped in the body of an old lady and can't remember the last time I had a pain free day when my body didn't ache and I didn't have to force myself using sheer willpower to get up and get things done by fighting through the exhaustion and pain barrier.

    So I'm back to square one with no answers. I'm so fed up :(

    Do i make an appointment and request a referral to a Rheumatologist? I can't live like this for much longer. X

  • Am v much relating to your disappointment. The diagnostic process is often a long hard road for most of us, sad to say! So anyone reading your update will be feeling for you greatly.

    Courage though: you can get there if you're determined....best, I guess, to hunker down & persevere with this....the health system will respond to your determination, and we'll do all we can to support your campaign for diagnosis & treatment

    When you've recovered enough from this disappointment and feel like getting ready to try again with your gp, why not download the checklist in my first reply, above, and use this checklist to log your signs & symptoms, both as they've existed up till now & also how they are currently. Meanwhile take photos of all visual symptoms. Maybe you're doing all this already

    Then you'll have a solid supply of important background info re your multisystem signs & symptoms. This is the kind of info your gp should document on your records....you can give him a copy of your completed check list...and tell him you don't want to have lupus or sjogrens, but you do have these multisystem signs & symptoms greatly reducing your quality of life & ability to work etc, so you do need to understand the underlying cause/es + get effective treatment. Being given this sort of info in 'hard copy' can make it harder for gps to block referral to rheumatology on the sole basis of blood results NB do keep a photocopy of any written info & photos you give your gp (with dates noted)

    And, of course, you can always try a different gp

    Hope something in that helps

    Take care

    XOXO

  • You've been given excellent advice from Barnclown so I've not much to add. You never mentioned that your ANA has been tested? Mine was never tested six years ago - only Rheumatoid Factor and inflammation markers - which all came back raised. Later on my RF turned negative and it took a while before my ANA was tested and then it only came back equivocal -until last year when it became clear positive. If it had been tested prior to all the medications I was given I think it would have told my story better.

    So this is an important autoantibody and if it hasn't been done then I would certainly request it now. Also I would ask gp receptionist to give you printed copies of all your results so you can keep a watch yourself and get to know your own inflammation levels i.e CRP and ESR.

    Some people's inflammation levels are always within normal range but tiny fluctuations are significant for them - where others like me have high levels all the time but sometimes these soar to reflect pain or infection or lack of moisture in my blood. Lupus often doesn't show up in CRP or Rheumatoid Factor at all so if these are the only tests you've had then they won't be useful for excluding Lupus. ESR and ANA are the more relevant tests plus kidney and Liver function as part of a full blood count.

    You should also make sure your Vitamin D and B12 levels pus thyroid panel have been checked by your GP.

    If you read up about Fibro but don't think it's a good fit with your symptoms then I suggest you request a referral to a rheumatologist. If your GP is tricky about this then make it clear that you know about seronegative autoimmunity and explain that you would prefer that this diagnosis came from a specialist. GPs aren't actually qualified to diagnose Fibromyalgia or exclude RA, Lupus or Sjogrens. 40% of those with Sjogrens are seronegative and 30% of those with RA are too. You could easily be in this category so please be polite, friendly but FIRM about this.

    Best of luck!

  • Thank you once again for your very informative answers to my post.

    You have been so helpful and I if it wasn't for the help given to me on previous posts I doubt I would have even made it this far.

    I am quite positive that I am suffering with Lupus and perhaps Sjorgens- I have another post where I have listed all my symptoms and they really are quite a perfect match for the condition and would explain so much.

    My main concern in getting a diagnosis is that I don't want any organ damage due to having an undiagnosed condition for years. Lupus is such a scary disease that can cause so much damage.

    I have downloaded your check list Barnclown and have a diary where i have each symptom in a list and next to every symptom i have recorded flare ups, hospital visits associated with the symptom and how long it has been going on.

    I also have about 10 photos showing a butterfly rash on my face and a rash i get on my chest.

    Twitchytoes- the blood work included an ANA screen.

    I had generic bloods done which showed that I have vitamin D deficiency and had raised liver enzymes. They sent me for a full liver profile a month later but it came back within normal levels and no sign of the raised enzymes.

    When I had the immunological bloods done I wasn't having a flare- just the normal everyday symptoms and pain that I have all the time and I had been on Pregabalin for a week.

    Do you think this could have any bearing on why nothing showed?

    I have looked into Fibromyalgia and I honestly don't think it fits what is wrong with me. I have so many symptoms that Fibro doesn't explain but Lupus does and it worries me that they're not finding it so the longer this goes on the worse it could get. God knows I can barely get out of bed some days as it is.

    I can't get an appointment with my gp until next week but I will take along the checklist, show my photos and ask for a referral to Dr. Christopher Edwards. He is a Rheumatologist who specialises in lupus and runs the Southampton Lupus clinic at the General hospital. He also works privately for the Spire hospital.

    I have been feeling so disheartened about it all, the Pregabalin doesn't seem to be working either though it does seen to help with anxiety if not the constant pain. My legs have been getting numb patches on them which is a new thing- have either of you had this?

    I also had a very strange incident two days ago. I went to go to the loo in the morning and as I turned over and lent on my forearm to stand up my body sort of seized up and I started juddering. It went on for about 3 minutes and my partner nearly called the ambulance. I could hear him shouting but from very far away, my vision was blackened and I couldn't stop my body from juddering and I bit my tongue. When it was over I collapsed back onto the bed in a heap for a while as I was exhausted. It was so horrible and looking back it happened to me once before. Do you know what this is?

    Once again thank you β™‘ I don't know what I'd be doing right now if I hadn't of found this forum and all the lovely people in it. It's a lonely road to a diagnosis but having this is such a help and support. Xxx

  • πŸ‘πŸ‘πŸ‘πŸ‘ I like the way you're thinking

    Numb patches: yes, I have strange numb areas...some are permanent (hands & feet) some flare when I'm flaring (right leg & right side of face). My impression is that my version of this is probably mainly due to early inset sjogrens

    Strange Loo pre-fainting sessions: yes, my version of this is v similar & probably mainly due to chronic dysautonomia, which is mainly due to my connective tissue disorder vascular ehlers danlos syndrome (EDS) overlapping with my immune dysfunction (infant onset SLE etc etc). I no longer worry much about these episodes because decades of this have taught me to crouch or lie down quickly and stay put until I can move safely. These sessions happen to me in the shower, on the loo and at various other times...most usually when I'm relatively more poorly or have been under strain (e.g. Had a procedure in hospital or been less strict at pacing my activities or not taken my daily nap cum beditation

    But numbness & strange pre-fainting sessions can have many causes, some overlapping. So please do record this in your log and mention all this to your doctors

    Am so glad you're here...for all the reasons you mention: it's mutual πŸ˜˜πŸ€

    PS the healthunloched STARS forum may interest you re the pre-fainting/syncope sessions

  • How do I find that Barnclown? X

  • -go to the top of this page

    -click on "my communities" which gives you a drop down menu including Lupus uk & any other healthunlocked forums you've joined, + an offer to "browse communities" ...click on that & you'll be taken to the full HU forums listing

    πŸ‘πŸ‘πŸ‘πŸ‘

  • P.s I am in the process of leaving my job as I can no longer physically do it anymore.

    I have worked as a live in carer for the past two years since I came back to the uk from Spain. I work long weeks away from home and my partner (sometimes doing 14 weeks straight) working with complex needs clients with learning difficulties and dementia. It is very full on and requires alot of bending and lifting. I have already been put on the C1 carer list so that I don't have to do manual handling such as hoisting due to chronic back pain but I still have to bathe and dress my clients and I just can't do it anymore.

    Up until now I've been able to fight through the brain fog, the pain and the tiredness but my last booking just before Christmas which lasted 5 weeks made me realise I just can't do it anymore. It's not fair on my clients either because I just can't keep up.

    So I'm quite unhappy about it as the money is good and im very fond of my regulars but I physically can't do it anymore.

    I've applied for office jobs and got some interviews lined up. Fingers crossed x

  • Hi Barnclown,

    I hope you're well.

    I got a letter in the post this morning from my gp surgery asking me to make an appointment.

    When I called they told me it was about my blood work. I said to the Secretary that it had all come back normal and she said yes but something showed on my bloods they want to discuss but not to worry. She asked if i had been to a&e.

    I was up a&e on Thursday and had bloods taken as I hurt my ankle and they told me it was broken in two places and put a cast on me. The next day I went back as I was in unbearable pain and they took the cast off as someone made a mistake reading my xray's and it's actually a very bad sprain. The doctor up there spoke to me throughly and when I told him I was being tested for Lupus and Fibromyalgia he was very interested and said that if i had it it would explain why i was in so much pain (apart from having a constricting cast on a swollen sprained ankle).

    I wonder if the bloods in the hospital showed something and they instructed the doctor to look at something.

    Very interested to see what he says when I'm able to see him.

    It does seem odd. What do you think? X

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