After 4 years I still don't really know what I have.Initially diagnosed with Undifferentiated Inflammatory Arthritis, then discovered by accident that it had changed to Connective Tissue Disease and Lupus.
I also discovered only yesterday that at some point I tested positive for ANA which I've never been told.
So I have confirmed anti b2 glycoprotein 1 Igg, positive ANA and have for at least 3 years had low platelets.
No one can seem to tell me what this all amounts to.
I really don't feel that I have symptoms of lupus like rashes or fatigue although i do get easily tired especially when doing something new or out of theordinary. Ive also been a migraine and cluster headaches suffere for decades for which I inject fremanezumab (Ajovy) once a month. To complicate things further I get clear watery stuff leaking from my nose every time I bend forward and they're finally looking into it. I also have a small hole in the roof of my mouth called Patent Nasopalatine Duct and I can't help but wonder if there is a link to the migraines. The vomiting during an attack is so violent I feel as though I may have blown a gasket!
At a dermatology appointment recently (got a actinic keratosis on nose) the specialist nurse also looked at the red and purple spots and petechiae then at my notes and said " oh yes that's because of your ITP." I'm not a doctor but does having slightly low platelets really mean I have yet another condition?? And why has no one told me?
I get mouth ulcers and in the nose but they're not constant and even though they are sometimes painful they are mostly short lived.
I've been on hydroxychloroquine for 4 years, my main symptoms are joint pain, really bad feet and Raynaud's with finger swelling, red purple spots and ulcer on fingertip. All on right hand.
I also get petechiae and purpura in random places, regularly on the backs of my hands.
Most recent blood test also shows high haemoglobin MCH and asking GP about it is like trying to get blood from a stone.
Next rheumatology appointment has been cancelled several times but they rang yesterday and offered me one on Tuesday. I want to ask all the right questions but am beginning to feel that I sound a bit deranged.
Bloods being repeated with thyroid check on Monday. B12 very good last time checked.
Thanks for reading xx
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Brychni
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oh hun I really feel for you . It’s so blooming muddled isn’t it ? Left hand 🫲 doesn’t know what right hand 🫱 is doing , no one communicates properly with each other and we’re left trying to function 😏. Am I right I’m thinking you don’t see same rheumatologist each time ?
Your migraines sound horrendous I’m so sorry 😞.
. I suppose the million dollar question for Tuesday is “ would my symptoms improve on a different medication ? . Like you I’ve done 4 years on hydroxy and several courses of pred when things kick off .
I’m sorry I can’t be of much use but I wanted to just say I understand and it’s pants . Big hugs xxx
Thank you Tiggywoos for your reply. Yes, you're right; there isn't much joined up thinking although I do see the same rheumatologist lately and she is very thorough but doesn't explain much and when I ask questions she often says somethign alarming that I don't really understand and then I just scurry off without another word. I also have to get printouts of my blood tests I have had a the GP surgery because she can't always see them. (?)
I think they hydroxychlororquine has 'modified' whatever disease there is and I too take prednisolone when things are unbearable and it works like magic. Generally I am a lot better off than most.
However, my life is ruled and has been ruined by migraines. For 2 years I have been on the fremanazumab injections and they have changed my life for the better; I am working full time but I still get the occasional migraine and wake up most days needing to take some sort of painkiller or a sumatriptan injection if it's full blown, and I hate it. I am so tired of feeling like crap most of the time and so I am always looking for the 'underlying cause' like the antibodies - I don't have full blown antiphospholipid syndrome, but the anibtody I have is the worst one, that causes blood clotting and I take an aspirin every day (when I remember) however I have also been told not to take ibuprofen or aspririn because of the ITP - I'm sorry but I just don't believe I have ITP! I know my platelets are low but they're not that low. Apparently all these things can cause migraines and so I naturally want to get to the bottom of them.
Regarding the hole in the roof of my mouth; I finally met a GP who knew exactly what it was and I was so happy to be able to discuss my concerns about it without being looked at as if was insane! My main concern is that the fluid that comes through it is the same as the fluid that comes from my nose and also that if stuff can come down it can probably also go up into the cavity, or whatever it leads to. I once had a bit of oat cracker husk stuck in it and was so panicked I made an appointment witht the dentist to get it out becasue every time I used my tongue to shift it, it was going further in! Perhaps TMI. Anyway, eventually it came out and I didn't have to go to the dentist. I am so tempted to pay for a private MRI of my head because there is so much going on with the nose, obital bone pain wise that I can't imagine there is't something wong in there that's causing the migraines.
The diagnosis of these autoimmune diseases is complicated, right? I do think the rheumatologist can explain how you evolved from undifferentiated connection tissue disease to lupus.
Most of us start out with a few symptoms and positive blood tests but then we progress. It sounds like you progressed in ways that put you in the lupus category such as low platelets and anti-phospholipid antibodies.
Have you ever been on steroids for your low platelets? There may be a range of severity. I know a young woman with low platelets who is watched but has never needed medication but I have seen a patient hospitalized with severe ITP.
Hi Kay - I'm not convinced that my mildly low platelets amount to ITP - there is a referral to haematology in the pipeline but a long way off and no one seems to be able to answer the question about wether or not the levels can go up and down perhaps be causing the bruises and petechiae.
I was wondering why the nurse used that term. She may have just been rushed. Sounds like you are doing well in that area. Good you have the referral to hematology.
Good question about whether the symptoms are caused by your mildly low platelets. Your GP should be able to answer that. There are probably people here who have low platelets and could let you know there experience. You might want to start a new post and ask.
So much going on for you. Hope you get answers soon.
I totally understand what you’re going through, it took about 10 years to finally get diagnosed for me. I had a lot of weird and not so wonderful illnesses throughout this time, very high ESRs and been in hospital with inflammation markers through the roof. I’ve had rashes but never had them. long enough to get biopsies till last year I was in so much pain with my hand I had an urgent appointment to see my Rheumy, it was then she saw my rash and thought it looked like a lupus rash, I was seen by a dermotologist within a week and had a biopsy which confirmed it was that, she is now joining the dots up, it was always MCTD she said I had but it was only when she had students in that I asked her in frustration what is wrong with me,, she is a stickler for blood results but mine never showed much apart from high RF. I’ve had lymphoma which could be a complication of lupus but my Rheumy did start taking me seriously after I had that. I’ve been on hydroxy for many years with quite a lot of steroid jabs and oral tablets. Hang in there and keep a diary of everything that affects you. Hope your appointment is a good one.
Hi Lizard28 - I have read that there is quite a strong link between lupus and lymphoma also a low platelets and blood cancers. I worry about that a lot as blood cancers run in my immediate family. I told the rheumatologist and her cryptic reply was 'another good reason to stay on hydroxychloroquine.' Iasked her what she meant and she said something along the lines of it helping to modify diseases of the blood. Did she mean like blood cancers, I wonder. Has the lymphoma gone away now?
Hi,I had been already on hydroxy for years before I was diagnosed with a rare type of lymphoma, my Rheumy didn’t give me a straight answer when I asked her if it could be connected. I did have chemo which did work but I found another small lump about a month after and it was biopsied and it had came back. It’s fortunately a slow growing cancer so I couldn’t get more treatment at that time but I’ve been on watch and wait for five years now and it’s not got worse thank goodness. I get bloods checked every 6 months and see my haematologist every six months so I just have t live with it. I will know if it gets worse this time.
I'm guessing you see a neurologist re. Migraines. When I was on a neurological ward after my brain haemorrhage there was a lady with a leaky nose which was brain fluid. Not saying this is your situation but a test of your nose fluid would be good I would have thought. If you are leaking brain fluid you would get horrendous migraines. Anyway a neurologist can easily swab you I would have thought. I was getting awful migraines a lot and headaches but since being on a higher dose blood pressure tablet they are greatly reduced. Apparently blood pressure meds work well for headaches. Hopefully you can see a neurologist and discuss a plan as I know headaches and migraines really affect your life so much. Take care xx
Hi dg - amazingly I have only seen one neurologist face to face about 18 years ago and the appointment was a massive waste of time. He was rude and dismissive and not even a suggestion of medication was forthcoming. In the intervening years I have relied on sumatriptan injections when I have an attack and then some horrible drugs which I had to prove I had tried: pizotifen, some sort of blood pressure thing which I shouldn't have been prescribed becaue of the Raynauds and finally Topiramate and HRT. None of them worked.
After my third hopsital stay a neurologist finally put his foot down during a phone consultation and got me a referral to a migraine clinic outside of my health board and I have been injceting a biologic once a month ever since. It really has changed my life but I still get headaches on a daily basis and thye just make me feel crappy.
The nose fluid thing I think started about 5 or 6 years ago. Soemtimes I wonder if I have ruptured something while haveing a migraine and vomiting. It's so violent that I get bruises around my eyes. I find it hard to imagine that such violent and painful retching doesn't cause any damage somewhere.
I think I wouldn't give up and if you are still having nose fluid and headaches every day I would ask for a neurology follow up. I am guessing you had an mri etc on the brain? Hopefully that would have shown up any issues. I have also had a doppler scan on my neck just to check that nothing was blocked from spine to brain. I think at the least a check of what the fluid is coming out of your nose would be good too. I always think if something is better but still not right and it affects my life too much then go back to the specialist or gp and push to get checked again. Good luck. xx
Hi Brychni, have you seen a neurologist for your headaches, I’m assuming you don't have a root cause for whats causing these? also possibly ENT to see if its sinus involvement and what is happening with hole in the roof of your mouth?
when you see the rheumatologist you could ask; when i saw you last you said i had ??? but i forgot to ask what is that exactly? and hopefully you'll get the answer you're looking for or like my rheumy will say, thats not my remit you need to see (whichever consultant he thinks it should be)
Hi Chris - see above 😅. Re the duct and dripping nose I have managed to get the GP to take it seriously. she discussed with senior GP and decided that I should try some steroid nasal spray as ENT will want me to demonstrate I have. she agreed it was pointless, but good to just see.
I think it is happening more now that I am in a routine since going back to work full time. It's pretty gross at work when I am with customers/patients. It's always when I have leant forward and started moving. First thing in the morning when getting up, bending over to put socks on, goign into the basement at work and bending over to get things off a low shelf, gardening. It's very different to the runny nose you get with a cold; it doesn't crust and drips from the tip rather than the bottom of the nostril. It drives me nuts. For a while I thought it might have something to do with the Raynaud's but it happens in all temperatures!
Hi soul22 - I read that too. The GP said my b12 from 2 years ago was a good level and apparently they won't test again on that basis - however, I agree that it's unlikely. I eat really well. On the other hand again - in spite of a really healthy diet i was very low for ferritin a few years ago.
Hi - I have most of your same symptoms. The anti b2 glycoprotein in my case was Antiphospholipid Syndrome. APS is a problem with blood clotting - you clt too much. Mine was so severe im on warfarin for life. However anti b2 glycoprotein can also be present in lupus. One way to determine if you have APS is to take a prothrombin time test (INR) if you are low then you probably need to be on blood thinners.
My official diagnosis is mixed connective tissue disease and APS can be a nifty “bonus” that some of us get with that. I also have lung involvement. I take 400 mg of hydroxychloroquine a day.
You need to definitely see a rheumatologist. Your ANA increasing can be a sign of higher disease activity.
Interesting - did you have any of the other antibodies for APS? Also, I wondered too about the ANA 'increasing' as I am pretty certain that ANA wasn't there with the antibet2 at my first ever appointment with rheumatology which, menas that it has been found during subsequent testing and no one has made me aware of this development.
And back to the sticky blood: I'm supposed to take an aspirin but not sure I should be doing so if I really do have ITP. and if my migraines are caused by sticky blood then I woul like to really give it a go with the aspirin to see if it helps with the daily headaches.
Oh well - I'll be bombarding the rheumy with questions on Tuesday!
Just write it all down, photos as well, take it a step at a time, keep breathing. I have many of the symptoms and conditions you have so can empathise. It is hard, I wouldn’t be without hydroxychloroquine but that is a personal matter.
Hi Swimwoman - pictures! My phone is full of them! 🤣 I do get flustered during rheum appointments though. I end up waffling while trying to get it all out or I say nothing.🙄 This visit is mainly about the weird sore that developed on the tip of my finger and wouldn't heal. It started by bein tender, then the skin went really hard and I could see one of the familiar purple spots quite deep inside the skin and then it kind of started to look a bit like a mouth ulcer and then the purple spot seemed to come to the surface and left a red hole. Took about a month to go away. At the same time there was what looked and felt like a chillblain on the side. also at the same time the area above the nail on my little finger went red, got redder and redder until I put some hydrocortisone cream on it (from my bulging medicine cupbard! prescribed for something I can'e even remember ). It sorted it out but all my nails on that hand grew out with lines and dents in them. Fingers swell a lot too. Weird.
Oddly your post chimes chords for me too even though I have systemic sclerosis and Sjogren’s rather than Lupus. For years I’ve been under rheumatology and neurology in several hospitals and it took 12 years to get diagnosed unequivocally with systemic sclerosis (limited cutaneous but diffuse internally) as well as Sjogren’s. Initially I was diagnosed with Rheumatoid, then primary Sjogren’s now associated secondary to Scleroderma. I’ve had very similar issues to yours on off and been treated over years for headaches caused by degenerated discs in my neck and lumbar spine.
Due to scleroderma destroying my gut and bowel, I’m now in hospital having just had surgery for colostomy. But day before I was admitted I had a review with my neurologist. It was supposed to be about my neck headaches but I mentioned that I’ve also been getting visual changes with light meaning I can’t see what I’m reading or where I’m going in run up to the headaches and then I become highly light sensitive and have to lie in darkened room. She said this is migraine and agreed that fluorescent lighting or sitting in sun (even with wide brimmed hat and factor 50 mint be trigger. I reminded her that she and a migraine expert neuro I once saw years ago had told me that women in their 50s don’t develop migraine - sufferers start in their teens and 20s so they told me. But to my surprise she said “there are always exceptions and you’re one. Everything you’re describing fits and aura migraine so it’s definitely this - maybe part of your autoimmune connective tissue disease overlap - I’ll tell your rheumatologist but as you’re in for surgery tomorrow I’ll also let them know so they can medicate accordingly”. The main thing I notice now is that they start after I’ve been enjoying sunshine and a good walk but now I’m in hospital, despite the lighting, I’m recovering from this foul migraine week. I can’t see how, given the challenges of ward life ie vomiting, surgery, stoma, catheter and pain, I’m over the migraine but I do seem to be. Good to have a diagnosis confirming it though as all neck related sign no neck pain made no sense. I hope you get diagnostic clarity they makes sense very soon. Having a label to explain symptoms is psychologically very helpful I have found 😊xx
I empathise; it's truly sh**. In my case there are some triggers but nothing to indicate underlying cause unless of course the antibeta2glycoprotein 1 igg or the nose issues! Hence the determination to get to the bottom of things.There's never been a pattern. Sometimes a late night, alcohol definitely but I haven't drunk alcohol for over 6 years and I still got just as many migraines before starting Ajovy. 🙃
It has been literally disabling and I've lost countless days, weeks and sometimes months of my life to migraines and cluster headaches.
hi I’ve just been reading all the things you’ve written and you really are dealing with a lot of stuff.
I’m really sorry you’ve had all these challenges. I have very similar problems with the mouth, hands and feet swelling Raymond’s and sometimes I get headaches, but nothing like yours.
I’ve been taking hydroxychloroquine for probably forty years but now I’ve also had to add sulfasalazine for rheumatoid arthritis symptoms in my hands and feet . This drug has really helped me with the rheumatoid arthritis symptoms and pain but I still have the problems with cold hands and feet and sometimes tightness around my wrist and ankle joints. It might be worth asking if you need to have an additional drug to treat the rheumatoid arthritis. I find that we have more than one condition and reading through other peoples experiences this is very true. There are definitely overlap conditions for instance I’ve type two diabetes as well. UCTD is an overlap condition with rheumatoid arthritis lupus and Sjogrens and recently I’ve been getting very dry mouth and dry eyes which are typical symptoms of Sjogrens syndrome , my advice for seeing the rheumatologist is going with a set of questions and you’ve clearly outlined in this piece above all your symptoms. Good luck.
Interesting I have had high MCH and MCHC for a couple of decades, then when ANA was done in 2021 that was strong positive Speckled.
My CTD diagnosis is UCTD rather than SLE at the moment. Other blood immunological criteria not enough to classify me with SLE using 2019 EULAR / ACR Criteria, although I seem to have most of the 11 symptoms previously used to diagnose the condition.
I am interested if others here have high MCH, as it might mean we are a subset on the Lupus spectrum who can maintain haemoglobin levels, even if number of cells go down. It is a bit like living at high altitude I guess.
I have issues with sinuses and tender scalp, not GCA though, headaches and migraines. ESR does not change massively, usually 3 or 4, once recently went to 16, when I had a bad flare. So, some doctors, because of pathways used, say no inflammation even when there is masses of inflammation.
My lymphocytes go down, and my neutrophils go up when I flare. (I plot neutrophil to lymphocyte ratio when I get blood results, peaks corresponding to severity of symptoms.)
Blood cancerwise. My dad had NHL (WM), CLL also in family.
Not sure why it is being left to patients to figure this out. Science focused on lucrative drugs rather than filling gaps in knowledge.
APS wise found it difficult to get comprehensive bloods done - GP said don’t match criteria needed to test (I'm in my 60s, so not now going to get pregnant, and not had blood clotting.) Comprehensive APS blood tests therefore were never available to me.
Pathways gormless, criteria based on science that is largely unknown, test methods and cut off vary from place to place.
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A long, hot, sticky night in flares, & I don't mean down the local disco for a 70's extravaganza.
