I paid privately for another ANA test and awaiting the results which should be with me today. I have Hashimotos, B12 Deficiency with positive Gastric Parietal Cell Abs but no diagnosis of Pernicious Aneamia. For the past 8 years I’ve been back and forth to my GP with mainly pain in my lower joints, I have a lot of busrsitis, muscle weakness, nerve pain. Have tried all sorts of medications but nothing relieves it .I had 3 steroid injections in my right hip and they didn’t work. Was told I needed a full hip replacement last year. Paid again to see a private Orthopeadic surgeon who said I didn’t need a hip replacement but I had tendonosis and bursitis and he planned a steroid injection with X-ray and dye into my hip. 1 week later I went down hill rapidly, I can barely walk. I walk with a stick or Walker and I’m 55!! I have reoccurring mouth ulcers in the cheeks and roof of my mouth, sensitivity to light, nose and cheeks red, need to wee frequently, both legs are painful but right more so. Both knees hurt and feel swollen, below knees also hurt and ankles and side of feet. Forgot to mention just before Xmas, my thyroid was out of sink, I had a GFF test for my Kidneys and it was abnormal level 54. I had a repeat blood test thyroid back to normal and EGFR level had rose to 74, so GP had no concerns. In desperation and in so much pain, I phoned the Doctor and spoke to a new GP. He listened to me rant, I told him Tramadol wasn’t easing the pain amongst all the other Meds I was on Naproxen, Codeine Phosphate etc and demanded I needed some pain relief. He gave me Prednisolone 6 tablets taken at once, they have helped but I’m still in serious pain. He’s referred me to a Rheumy and I’m hopefully going to make an appointment today. Does this sound like Lupus, as I feel totally alone with this right now?
ANA Positive 1:80 Nucleolar pattern 2013 and ongo... - LUPUS UK
ANA Positive 1:80 Nucleolar pattern 2013 and ongoing pain. The last 5 weeks I can barely walk.
Sorry things so bad for you. I have same nucleolar ANA and it is a more unusual pattern pointing most to scleroderma. Scleroderma is much rarer than lupus but with nucleolar ANA you may want to look it up along with Myositis just in case. But basically symptoms of all these autoimmune connective tissue diseases often overlap and some of these diseases like scleroderma, lupus and Myositis can overlap in disease called Mixed Connective Tissue Disease/ MCTD. So it’s worth reading up and keeping an open mind. Hope you see a good rheumatolgist who can help. 😊
I had bursitis of the hips about 18 months ago (am 43 this year). I had twice weekly physio for about 4 months and then once a week for another two months, had to ice thrice daily for that period, use topical pain relief if required, do 30 mins of muscle strengthening exercises twice daily, and then start yoga twice a week at the end as I stopped my physio. I have been pain free for the last 3 months now. I had tendinitis of the shoulder before that and did the same process over about 6 months also and also have no issues there. Key is regular physio to start you off, then regular icing and muscle strengthening exercises followed by regular yoga. I think yoga is for life now... am doing one on one online with a wonderful woman who seems to understand the body beautifully and be able to cure any minor muscle pain that occurs through focused stretching.
Thank you for your kind reply. Im walking my 3 little dogs and every step I take I’m in such excruciating pain. I rub anti inflammatory gel into my hips legs and knees, it’s a 12 hour lasting one. I’ve been doing hot and cold treatments and when ever in my automatic car, I put on the hot seat. I had Physio but it made the bursitis and tendonosis worse and that’s when they decided to inject by X-ray the hip joint. I try and keep active even though it takes a lot of effort right now, as much as I can take. Private Rhuemy Appointment has come through and not till the 25th June 🙈😢 kidney test and thyroid blood tests next week and steroid injection into tendons on the 10th May, so I will just have to grin and bare the pain.
At risk of being contrary here (sorry😉) - ANCA is actually associated specifically with Vasculitis. Certainly when I’ve had suspected Vasculitis it’s my ANCA they test.
The specific antibody for MCTD is called U1 RNP. If ANA is positive and symptoms match but there are no specific autoantibodies or other histological evidence to confirm a full blown connective tissue disease, then it’s usually classed as undifferentiated CTD/ UCTD
If you have more than one full blown CTD then it’s called Overlap CTD now.
Okay I defer to your experience. I only know that the ENA antibody specific to MCTD is U1 RNP because I have a very similar RNP antibody - but it’s for scleroderma rather than MCTD. People often think MCTD and UCTD (neither of which I have) are used by clinicians interchangeably - but actually they aren’t. And ANCA is not enough to confirm a diagnosis of MCTD as far as I’m aware.
I am being very pedantic here I realise but in reality I am all too aware that many of us don’t fit neatly into boxes. I certainly don’t and probably never will 🤷🏼♀️😉
As soon as my ANA recent test is back, I’ll update you. It should of been back Tuesday, Wednesday this week. I’ll chase it up tomorrow. Hopefully you can point me in the direction of which tests to get next, depending on the titre and pattern. I’ve also got other auto antibody tests down with that one, so again I’ll take a copy and put them up and hopefully someone can shed some light .
Definitely although I’m not always on here so feel free to message me. I have had a nucleolar ANA showing for about 7 years now and several specific nucleolar related antibodies for scleroderma have shown up more recently - now one is highly positive and is specifically associated with Nucleolar ANA pattern and systemic sclerosis. I also have seronegative Sjögren’s.
Thank you- will do. You’ve been a great help 😀
Results are in and the pattern has changed to Speckled? Do you know what the best tests would be to order next?
Speckled is more common than nucleolar. Your rheumatolgist will run them but if you want them done privately first then order a full autoantibody screen for connective tissue diseases including RA, Lupus, Sjögren’s and MCTD. Look at lab tests online website for more info on the more specific ENA panel - labtestsonline.org.uk/tests...
“Antinuclear antibodies (ANA) – this test is positive with a variety of connective tissue and autoimmune disorders; ANA are present in about 95% of those with scleroderma, typically with a speckled, centromere, or – more rarely – nucleolar pattern test result.”
Thank you, I’m going to try and wait till end of June for my Rheumy App. Would my GP be able to trial me for Methotrexate for the pain and is so would it play with the ENA blood tests? He’s been very good and given me 30mg of Prednislone a day until Rheumy App but it just isn’t enough. It’s day 9 of taking it.
To be honest I don’t think your GP would or should trial you on methotrexate until you’ve seen your rheumatologist.
Ten years ago I was diagnosed with Rheumatoid Arthritis and my GP did try me on one of this family of meds because he knew I’d have four months to wait before seeing the consultant as I was living in a remote location. It was a disaster because i had an allergic reaction and the rheumatologist was most annoyed with my GP for going it alone. Because I was then given steroids they obscured all the signs of tissue swelling in my blood and joints - so I had to wait a further four months - often in agony - until I finally got diagnosed and put on methotrexate.
And actually with hindsight I think I was misdiagnosed and had a much rarer more complex overlap CTD rather than RA - although I understand why my GP did what he did because with RA an early diagnosis and treatment is more urgent. A lot of erosive damage can often occur in the first 3-6 months from onset.
I know it all seems to take forever when you’re in a lot of pain. But over time you get used to finding ways to manage, experiment with foods, gentle exercise, mindfulness and eliminate possible triggers and use topical treatments such as heat of ice, ibuprofen gel, capsaicin cream etc during the often long waits between clinical appointments.
Rheumatolgy is a often a slow and inexact science and it can take people many years for a rheumatologist to pin down an actual diagnosis. Not what you want to hear of course but there are many on this forum who are still undiagnosed and untreated after years of pain and other debilitating symptoms.
So you really need to find ways to manage pain that are sustainable if you possibly can. You are definitely in the worst stage of onset though I would think. I’m so used to pain now that I don’t take any pain meds - just breathe deep and know that once I’m up and moving around some of it will alleviate. Also keeps journal so you have as much information about symptoms and response to meds including steroid tapers. Gather as much information about your history and location and type of pain, bloodwork (only off steroids and anti inflammatories) and imaging as you can to give them as it all helps them piece the jigsaw. Stuff like how you respond to weather changes, good photos of rashes, discolouration and swollen joints etc are all very useful.
You may not even get a diagnosis at your first appointment - especially if you are taking Prednisolone - which masks the signs of active disease - especially in the blood.
Really this pain you describe could suggest any number of rheumatic conditions. So I’d taper off steroids well before your first rheumatology appointment as you could just be delaying getting a diagnosis and treatment. Also, in the week prior to your appointment, try to avoid taking anti inflammatories and just stick to paracetamol and perhaps ask your GP for opiate meds such as Tramadol or Codeine or Amitriptyline instead. I know it’s the hardest thing to live with pain and diagnostic uncertainty - but it sounds at least like your GP is rooting for you. So very best of luck. X
Tramadol, amitryptaline, duloxitine, gabapentin, naproxen etc none have helped and what Evers happening, the pain has intensified and made it very difficult to walk. I can’t walk without sticks or a frame and even the mattress or sofa hurts my muscles which is bizarre. What I do find that helps with the Prednislone now is codeine phosphate and paracetamol and 12 hr Voltol rub and getting into my hot tub. I’m trying my hardest to remain positive and reaching out as I know you’ve all been through similar experience and totally understand where I’m coming from. Thank you for helping me understand that the Prednislone I’m taking could mask the next set of blood results. Do Rheumys take symptoms into account t over blood tests as that’s my biggest fear that the next lot of tests will draw a blank. After 8 years with flares this being my worse flare, I’m determined to get to the bottom of it.
Oh dear I really feel for you. Re Prednisolone - personally I would definitely taper off well prior to seeing your rheumatologist because yes the steroids will mask inflammation undoubtedly. But if you make a taper journal then this would almost certainly be diagnostically useful for the rheum. Answer: yes they are usually very guided by certain markers in your bloodwork.
Having an ANA with first nucleolar and then speckled pattern should guide them toward less common autoimmune or auto inflammatory diseases or overlaps. So they would usually run tests for muscle and nerve weakness as well as systemic inflammation. I would say your GP should be very wary about leaving you on steroids for long at all and, once you’re tapered back off, could more usefully be running more tests to save you paying for these.
They can refer you urgently for ultrasounds and MRIs and x-rays which would all be useful for the rheumatologist. A neurology referral (private if you have health insurance) would be useful if you think your large nerves and muscles might be involved in whatever is going on. Testing the muscle enzymes in your blood, CK, might be a good idea too for excluding Myositis.
Checking you don’t have one of the more common types of vasculitis, polymyalgia rheumatica (PMR) is within a GP’s remit usually. Rheumatology is almost as much of an art as it is a science I feel. I have been where you are but you’re way ahead of where I was ten years ago because you’re here asking questions! X
Those are a lot of symptoms, and I’m so sorry that you’re feeling terrible. When you see the Rheumatologist, ask about Spondyloarthropathy. There are a number of autoimmune conditions underneath this umbrella category, some of which match your symptoms almost identically. Specifically, Spondylitis and Enthesitis. But read about them all and see if anything sounds familiar. Your hip pain, bursitis, tendon pains, nerve pain and lack of response to steroid injections are all very, very common symptoms. As is a fairly rapid onset of difficulty walking and joint pain and muscle aches/pain.
Other symptoms you list cross over to a number of illnesses, including Lupus. But they aren’t only Lupus. Keep an open mind and one thing we always recommended write down your symptoms, how long you’ve had them and some initial questions. We all have had the bad experience of suggesting a diagnosis to docs and them not responding well or even elongating the diagnosis process.
Getting an accurate diagnosis takes awhile. I know it sucks to not get answers and relief. One recommendation: pause on more injections. If you have any form of Spondyloarthropathy, injections can make it much worse. Basically, every time you get poked your body triggers a big, painful inflammatory response. Take it from someone who had way too many and then some.
QQ: I’m guessing you’ve had imaging (MRI) of your spine to rule out anything structural that could be causing nerve pain and referral pain to your hips (except the bursitis)
And the biggest question: can you sit without pain in your lower back, hips, butt and maybe the back park of your legs? But mostly your bum and lower back/sacrum.
Thank you for the great advice!! To answer your question- no it hurts when I sit from my lower back, into my bum cheeks and too if my legs. The worse pain is inside of hip and if I try and move my leg, whether walking, lying, going to the toilet to far outwards, I get excruciating pain down my thighs, inside of thighs and below knees. My knees are also swollen with bursitis too. My legs are also very sensitive to touch.
My next question was going to be do you get swelling in your knees and do your legs also swell / have edema. The touch sensitivity is called myalgia, which i would 💯 expect with swelling. Lots of little nerves near your skin being pushed on by fluid, so touch just makes it worse.
Do your joints when they are or are not swollen ever turn red under any circumstance?
Btw - not trying diagnose. But you have a lot of symptoms of a cross over syndrome (similar to myself), so it’s more a case of helping you get the right help to make this process easier.
Spinal or hip MRI? Did you do any sports or have any fitness injuries? Have you been evaluated for any level of osteoarthritis in your knee or hip?
My ankles and feet swell come evening and I’m weeing really frequently. I’ve never had any urine infections but Dec 2020 my EGFR was 54. No urine sample was taken. Blood test 2 weeks later and it had risen to 72, no further action .I’ve requested another blood test for my kidneys, as feet and ankles are still swelling up and I’m still weeing frequently, so having it next week(Tuesday) And I’m going to ask them to do a urine sample too to check for protein.
Yes, absolutely push them for more tests. Never mess around Kidney stuff!
Don’t forget everyone - ANA values can change. Even go to zero and you still are in an active disease state. ANA is the most base level test but it’s accuracy and validity are variable.
Also the whole you have to meet blood and clinal criteria combo thing.
In my recent experiences (last couple years) Rheumy’s start with basics and then almost immediately follow up with much more extensive testing re: blood work, DNA, etc.
Where we all need to push ourselves a little more is actually helping them “exclude”. It’s natural to build a list of things you think you have vs switch to the process of elimination.
A great example is nerve pain, joint problems and mobility. These can be caused solely by a disease, solely by injury or trauma (to that area or it’s referred from another area) or **both**! Both sucks, but after 7 years I can finally categorize each symptom I have and put it into my AI buckets, latent injury bucket or who the heck knows bucket!
It’s just my experience that the more comprehensive the testing and evaluation + second opinion + keeping oneself organized and looking before leaping seems to result in more accurate diagnoses but also treatment plans. God knows it suuuucks being on the wrong medicine or program because of an incomplete or inaccurate diagnosis. It’s also dangerous.
There are some OGs on here, as well as our wonderful moderator Paul who are god sends when it comes to laying out the diagnosis process and how we as patients can help our doctors do a better job. We’re a diverse group and autoimmune diseases are still, honestly, hard for most of the medical community to get a grip on. There are more than 100, many that mimic each other.
So, step 1: establish a good relationship with a health care provider you feel you can trust and go from there.
As far as pain management, I feel ya. Mine pain was so bad (crippling), I actually went out and added a Neuro to my team for that issue specifically. General docs and even Rheumy’s aren’t always the best at pain medicine (techniques and medicine). Highly recommend tracking one down if at all possible.
I hope this helps!
Yes yes & yes!!!!!! I only said to my GP when he referred me to the Rheumatologist, I think It maybe a good idea if I’m referred to a Neurologist too, as I feel it’s complex, and due to my 2 x Spinal Surgeries, I would like to rule out any Neuropathies, as tendons have nerves running through them. He hasn’t as yet but I’m seeing him next week so I’ll ask again. My knees and hips are hot especially at night when resting or after a hot shower. I had MRI 11 years ago on knee and told Osteo/wear and tear. Also had mri of my hip and first told I needed a hip replacement. Saw a private consultant and was told I didn’t and that I had Bursitis of the hip and Tendonopathy. Shortly after I had a steroid injection by X-ray with dye directly into my hip. I’m wondering whether they ruptured a tendon, as 1 week later I couldn’t walk.
You and I have way too many symptoms in common and both have been poked and prodded, too much!! Just swap your spine surgery for my knees. But, like you, I was diagnosed *after* a spine procedure with one ... then three autoimmune conditions over the course of 6 years. My Neuro and Rheumy absolutely agree that trauma to the body (surgeries, too many invasive procedures, and infections) can “awaken” either dormant, slow progressing or asymptotic autoimmune conditions. It simply sets off a cascade of inflammatory responses and our body’s just can’t sort it out. As for neuropathy, it was way worse later on, but when I reflected it was actually one of a small cluster of odd things that were a sign of things to come.
My biggest complication is trying to treat my sport injuries (from 25 yrs ago!) without setting off my inflammatory cascades. It’s an obnoxious balance, but my knees have officially gone on
I def think they really need to dive in and be really thorough to sort this out for you. And find you a pain protocol that works! Chronic pain is just 😞
Pardon all the typos!!
Typos- What are they 😂
Orthopaedics Hospital Appointment for a week Monday, just called to check I’m coming, which I obviously am haha I’ll show him my findings and he may even refer me over to Neurologist, as I have a private Rheumy Appointment for end of June. Consultant has always thought it was more complex and he was the one that said I didn’t need a hip replacement. Not sure about steroid injection into tendons as the last hip/X-ray worked for a week but then I couldn’t walk. Every day l’s a different day and just open up and talking on here and listening to you lovely people is a help in itself 😀 what you’ve explained about yourself and your surgeries and symptoms? we do seem very similar though! If I can get the right pain management I would say that in itself would make life easier, it’s pointless taking drugs if they don’t work and I think because of the spine surgeries and how much I had to take leading up to both emergency operations, anti inflamortaries just don’t work anymore and not does too whack if Tramadol. Morphine would be good on days of hell but then I doubt they would allow this haha but I remember before spinal surgery, it was just heaven not feeling that awful nerve pain 😅
My first appointment when this got so bad within my hips, especially right hip was to return to my Spinal Surgeon, as I thought it was connected from my previous Spinal Surgery. That’s when he run some tests in 2013 and told me I had Hashimotos and a positive ANA test for MCTD. Spinal surgery was 2004 and 2007. Since then it’s been getting more and more painful until I finally decided I needed something done about it. I’m not surprised at all with today’s result with my ANA as auto immune is mine field and science suggests once you have one you may get another. I really do feel its Lupus but I think you’re absolutely correct in saying to keep an open mind with all that’s going on. I’m very interested and grateful you e taken the time to reply to me and give me some guidance. Thank you so much
angelharley, I'm so sorry you're experiencing so much discomfort. I too dealt with a lot of the same issues. I'm currently being treated for Hypothyroidism. In 2016, I was told I had Lupus or Rheumatoid Arthritis. My C4 labs came back at an 0.11. Normal range in the States run between 0.16 to 0.48 milligrams. It may be different in the UK.
The signs that pointed to Lupus are still there but my rheumy says because I take such good care of myself we may not know for sure what autoimmune disorder I definitively have. I'm very photosensitive to the sun and when I get too much I'll run a low-grade fever and get flu-like symptoms for days. I pay very close attention to the signs and have learned to hone in on the precursors that exacerbate said issues. I used to break out in blisters around my cuticles when the sun gets closer to earth. Usually March/April. I'd wear thin cotton gloves when driving to avoid as much direct sunlight as possible. I've had iron infusions that have left my veins hard to probe with needles. I have one "juicy" vein I point out to the phlebotomist when doing labs. I also ask for their smallest needle and tell them they get one shot.
I used to wake up with so much inflammation in my hands, hips, knees, etc. I'd have to walk myself in an upright position. It'd take me a full 60 minutes to feel well enough to tackle a shower before work. Sleep is imperative if you also deal with Fibromyalgia. If I didn't or don't sleep well I find it very hard to function with brain fog. Inevitably I'd call in sick.
Long story short, (or longer) the pain I have now is mostly in my neck. I receive Botox injections every few months from Pain Management to dumb-down the throbbing I have at the c4-c5 level.
What I'm going to say and share is a lot of the health issues we experience is based on our diet. 5 to 6 weeks ago I got in a program to help heal my thyroid, leaky gut, inflammation, etc. I now wake up with no pain. It's amazing. It's a life altering decision we each have to make in order to be the best version of ourselves. I'm now down to two Tramadol a day. Sometimes one. And they're only 50 mg. If you'd like me to share the journey I'm on for a better healthier way of living please don't hesitate in reaching out.
There is a better healthier way to life. l was tired of being sick and tired. I'll never turn back.
Good luck to you. I truly hope you get well. I know it's possible to change lab results. My thyroid labs are already improving.
Cordially,
A sister from the states.
By the way I turned 59 last Friday. I feel better today than I have in years prior.
Seen Orthopaedics since I wrote this post, more X-rays and put on the emergency list for full hip replacement. Rheumatologist is phoning this evening for 1st Consultation, he’s got most recent blood tests, photographs, urine tests etc and I’ll go through my symptoms this evening with taking hip pain into consideration.
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