I was wondering if anyone here has been diagnosed with both? I have lower back pain, but never had any X-ray that shows any degenerative changes. My rheumatologist mentioned last Thursday (over a phone appointment) that he thinks it is osteoarthritis in my lower back.
I have significant morning stiffness of my ankles, knees, and left middle fingers in the morning. But never does any X-Ray show any changes in the joints. He has mentioned poly arthritis to me several times.
The last blood work I had, he says they don’t any active inflammation, and that is great! But I was feeling really good on the day it was taken. I have more of the same bloodwork in three months , and every 3 months for the next year.
I am just tired of not knowing what is going on. One minute it is this, then something else, then it back to what I was told in the first place. It has been 30+ years that I have been in the dark. I have been told by the rheumatologist that I have lupus with a blood clotting disorder. (He was assigned to me while I was in the hospital, and told me I had 8 of the 11 criteria for lupus - something I had never heard of before my sister and aunt had kidney trouble because of it.) The other specialists don’t get along with this one doctor, so they tell me, really, what I have is “ bad luck”. I am ready to give up. I have had 9+ pulmonary embolisms in the past year and a half. I have had new clots on blood thinners and while wearing thigh high compression socks every single day! Bad luck?
Sorry. I don’t usually vent about this or talk about it to anyone, but I have just about had it. I am seriously at the point of just stopping all my medications. Blood thinners, Plaquenil, pain meds etc. the pulmonologist I see was saying he doesn’t even know why I am being given Plaquenil, because the rheumatologist is giving me such a low dose ( I take 200mg in the morning, and 200 at night). Ok fine. I have researched it all and none of these drugs are prescribed for bad luck. 🤷♀️🙄 So, yeah, why take them?
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Willow7733
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Bad luck - I don't know where to start. I think the worst of your luck is crossing paths with doctors that don't want to look outside of the box. Also, as far as osteoarthritis, it shows up on x-rays, MRI, etc. So my thinking is your pain is more lupus related, but some others may know more. I know that my rheumatologist gives a form to fill out and specifically says not to include any back related pain which I don't understand at all. Your blood issues are really concerning. Have you seen or consulted with a hematologist? Also, I don't think your dose of Plaquenil is so low.
I am going to vent a bit myself here for all of us. I am thoroughly disgusted with how so many doctors just brush patients off if they don't know the answers in the labs they've run or films. I have appointments this week and am already dreading them because I will most likely leave and feel no better if not worse afterwards. Even if they don't know, a little compassion would be so helpful. Wishing you all the best and will keep you in my thoughts.
It is a beautiful day out today and I went for a walk. I am in a much happier mood now. I promised myself not to let all of this of the past year bother me so much. I guess I am just tired after so long and not having any concrete answers.
I have a problem with chronic anemia. So, they recommended that I get a hysterectomy last October. And this week, I find out my anemia is back and worse than ever. It is just so frustrating.
I agree completely about doctor these days. My team (since having the blood clotting issues) are pulmonologist, rheumatologist, hematologist, gynaecologist, and vascular surgeon. The pulmonologist leads every thing because my lungs have been hit the hardest with the clots. He told me in his office that my blood work shows no hereditary markers and so no lupus - the blood tests and x-rays are negative so not possible. Maybe he means APS? But is saying lupus for both disorders? I read that no one blood test can diagnose lupus. I have a strong positive ANA (1:640 speckled atypical). 🤷♀️
I have never seen the results but my pulmonologist said it was negative. I have high c- reactive protein and sedimentation rate. That and the ANA was positive . I have always had high ANA (since I was 16), C-reactive and sed rate. Maybe that is why the pulmonologist said it is bad luck and not lupus?
Do you not ask to see them ? Bloods are usually documented in gp letters which I get a copy of here in the UK.crp and sed rate can be elevated in lupus .whilst people with lupus have a positive ana result a percentage of the population have a positive result without having lupus 🤷♀️ x
In Canada you don’t get a copy unless you go to the hospital and ask for it to be mailed to you. Most of the time, you get tests done and see the doctor and they tell you what is what.
My rheumatologist told me in the hospital that ANA is high and that with the meeting so many of the criteria, points to a diagnosis of lupus and that I probably had it when I was younger, it just wasn’t diagnosed. 🤷♀️
We can asked to be copied into letters here.pity your rheumy isn't your primary consultant.i have lung issues and see a chest specialist i also have lupus nephritis but my Rheumatologist is still my main consultant xx
It would be great! I just am going to live my life (like I have for the last 30+ years) and accept that sometimes things have no concrete explanation. 🤷♀️ Bad luck it is. ☺️
Good luck with your bone density. I have osteoporosis and have been on multiple meds. I have had fractures - some from falls and a car accident and a few not sure why. Another thing to deal with.
Polyarthritis is common in lupus and isn't degenerative like other forms of arthritis. I was diagnosed with it in 1996 after going stiff but wasn't diagnosed with lupus until 2018.If you Google Polyarthritis and lupus there is info from John Hopkins. I agree with pumpkin that your hydroxy dose isn't low I've been on 400mgs a day for a few years now.it is often calculated on body weight.
I don't think any of it is bad luck or coincidence and I understand the frustration regarding meds but the meds could well be protecting your organs from further damage. SmL xxx
Oh I have degenerative bone disease, osteoarthritis, poly arthritis, rheumatoid arthritis, and thyroid plus parathyroid issues! My bones kill me in the cool/damp/ cold weather. I also have stage 4 kidney disease (that causes lower back pain)
If they aren't checking your kidney's I'd see if they could run basic blood test to check them.
Also 400mg per day of plaquenil is a regular , not low dose. Although it also depends on your weight. The pulmonary embolism does sound like your original diagnosis of blood clotting disorder so if I was you I would just worry about that as it seems like the most serious symptom you have.
I would imagine a lot of us have OA too, I'm allied health care and, if I remember rightly, something like 60% of the population has some sort of OA somewhere in their body by age 40. Mostly wear and tear..... terrible bad luck if you've got loads of it, I'd see a good physiotherapist who can give you exercises - really important so we don't get stiff(er)!
Hi willow, I really feel for you. This sounds just like the crappy discrepancies you get here in the uk. I have the same pain as you in many joints and been told by my rheumatologist I have Polyarticular arthritis/osteoarthritis and I’m being checked for lupus sjogrens ra CREST ETC but my ana is always negative and my inflammatory markers are up and down like a yo-yo. So my gp/primary care says it’s an zero negative auto immune disease of some kind but the arrogant rheumatologist says it’s just menopausal as my blood work isn’t positive. So fed up with old boys network of consultants. Take care and make sure you’re ok with coming off your meds. We need to keep strong and fight for answers against the institution. X
Me to,I am menopausal and have same Ana negative,lupus blood clot disorder,raynauds,erosion on toe joint.They think it is mixed connective tissue disease.sending hugs.
Hi Willow! I’ve been diagnosed with both. Osteoarthritis in my lower back along with RA , Lupus and APS. Plus fibromyalgia just so everyone is invited to the party 😁. First it was fibromyalgia, then I had RA, then Lupus and then APS. It’s a spectrum and we can get some of all of it.
I would say that osteoarthritis is actually my biggest pain problem right now.
About 6 years ago I felt pretty good. Remission like good. And I stopped everything. It was during this time my diseases were still silently damaging and I ended up with blood clots, hearing loss, brain issues including memory loss etc. These can be insidious and I had know idea it was happening.
I completely understand how you feel. It’s been 30 years for me too. I can only encourage you to continue to advocate for yourself. Bad luck is condescending and has no place in a serious conversation by a Doctor.
FYI. Plaquenil has also been found to be helpful for blood thinning too.
I know you were just venting and I think we can all understand why. I just wanted you to know you are not alone.
Thank you. Yesterday I just had enough. It all hasn’t bothered me much until now. I don’t know why, but thinking about it all just really got to me yesterday. ☺️
Same I have the blood clot disorder and in between ra and lupus,some blood works show up.Now have bone erosion on little toe and before told I didn't have ra,I have been suffering withjoi t pain since 16 now 49.Also going through menopause so I think hormones make raynauds worse.Hope u get sorted.
I really don’t know what to think. I guess just go with the flow? The past year, it has been one thing after another. I think I am premenopausal, or in it, because I just had a hysterectomy in October for trouble with anemia. In October, they did an abdominal hysterectomy to try and solve the problem. I have one ovary left. But this week, I was told my anemia is back. 🤷♀️ I guess that wasn’t the problem? I don’t know. More bad luck I guess. 😁☺️
Hi Willow, I have been diagnosed with Lupus and this year have been diagnosed with severe osteoarthritis in both hips , although my right hip is worse. The osteoarthritis appeared very suddenly and progressed very quickly .
Really? I have been having trouble since I was 16. I am 48 now. I have been going through all of this on my own - my family were very against any kind of complaints medical wise. It was always “oh, and do you have cancer? No? Well then we don’t want to hear it!”. I later was told I had “rheumatism “, whatever that means. 🤷♀️
I am pretty sure if I had caught this a lot sooner, I wouldn’t have had all the other joint problems or anemia or blood clots in my lungs.
My understanding from everything you said (including the essential positive ANA that is currently required) is that you do have SLE.. mind you I'm not a Doctor... haha.
Have you done the new BILAG test and with you rheumy? I wrote about it the other month I think, but here is the link.... some of your other doctors sound pretty awful.. so sorry... I can empathise with some I've met! academic.oup.com/rheumatolo... The link to the test is within the article.
I'm glad you've got your head round it ie not letting it get you down too much. Took me a while after my rheumy took away the SLE diagnosis he'd given me for 3.5yrs to "lupus like syndrome" after I pressed him re the neg ANA bit again... due to my feelings of imposter dooda! Fool! Anyway.. at least he's now made proper diagnosis of Sjogrens after my positive lip biopsy from 5 yrs ago was incorrectly marked as "negative, just sailadinitis" by a former colleague. My severe symptoms for it also made it rather obvious.
Hope you are able to do your Bilag test yourself - and satisfy yourself plus go through it with your rheumy at some point (or email it to him?) that you are defo SLE. The other docs would have to go with that, surely...?
Omg thank you! (For the information and the laugh - some doctors are pretty clueless on how to deal with people, aren’t they?). I will do the test and see what my rheumatologist thinks! I actually have a face to face appointment in August!!! And he told me if my lower back continues to hurt to call his secretary asap and he will see me right away. I can take this test with me! He is very up to date with things though! He suggested a low red meat, low dairy, and low sugar diet. Some doctors don’t even look at that connection. I was pretty impressed he was suggesting this. My face is a mess. As soon as he saw me in the hospital he said he noticed the rash in my face first thing. If anything, I wonder if I could ask him for a referral to see a dermatologist to see what I can do now that masks are no longer mandatory. People can see my face now. lol So embarrassing.
Aha well yes. I was born with all this - and in fact my Rheumy stated that on his post assessment letter ie "had SLE from birth"... I was in a right state since a babe in arms but sadly my rather odd/strict father was anti othodox medicine and would not take me to see a doc. My mother was powerless... you can imagine the rest.
Anyway, what he DID do was change my diet to the most clean, nutritious he could. So definitely NO sugar, and definitely no additives etc. It really really helped. The skin really improved (I was a crustacea of rashes and bleeding scabs all over, I kid you not... very poorly) and the mouth full of ulcers, and whilst it couldn't change the bone deformities and heart conditions etc, at least I looked a little better.
He was into naturopathy - and these days that's a normal diet for those into ultra healthy fare. He also put in one of the first water purifiers form the US at source...so everything I took in and also put on my poor body plus washed clothes in was so much better than the vile water we had before. Also he got one of the first juicers from the US and I was made to drink all manner of concoctions such as people have now. I can only advise that you really give your diet a big ole overhaul and drink 2.5 litres of water (not coffee etc) a day. This will really make a lot of difference to you, I'll be willing to bet!
Those who know me on here have heard me bang on about this happening over and over................. but it's because I care so much that others might be going through things they needn't as badly as they are that I repeat all this. the change to many on here who did a week's test of increasing water intake to 2.5 litres a day ( on top of their tea etc) was quite remarkable. It's so essential. I have a brilliant water purifier by Nikken - the Pimag Waterfall... but my friend found it hard to get. It's not cheap... but it made such a difference to just my enjoyment of water. She got a Virgin contraption in the end... and having been with her for a week or so recently, I can say whilst it's not quite as fab as my Nikken, it's much much better than yucky tap water. And the difference a properly hydrated body has on the joints and skin is immense..... My friend has (had, pre methotrexate and big change of diet and huge increase of water each day) very bad rheumatoid arthritis... was making her bedridden. These days she has (and drinks) a pint glass of water with lemon in her hand all the time... glugging at least 3 litres a day. She's a changed woman... walking and swimming, always active. And all the rashes have gone.
So - have you looked at the Zoe website? It was the one for Covid stuff along with the Government but since the latter has decided to stop funding (humph) Zoe has renamed to Zoe Health or something. On there you'll find tons of info on what foods to eat to maximise your health.. but if that would be a bit of a shock to you (I can understand that!) then just eat tons of greenery, bright coloured fruit and veg etc, plus oily fish, and chicken etc - organic if you can afford, and change your carbs to brown ie wholegrain rice/pasta/quinao etc... no white rubbish which leeches the body of precious Vitamin B.. and maybe take a good Solgar multivitamin/mineral in the morning and fish oils if you don't already? I do apologise if this is all a bit evangelistic........ I still have tons of issues, my hands for one are bright red, swollen and hurting as been typing too much suddenly - but you have to try eh? Gawd knows what state I'd be in if it wasn't for my diet/water/vits etc intake each day. If you read my biog you'll see what I mean. I love your doc for suggesting the changes! Well done him - in my view it should be the first question they ask new patients........... as what we put in our bods is essential to get the maximum out of our lives.. and l limit the grim stuff, especially if we've been dealt rubbish cards health-wise. It could even help your skin.
And.. please don't use any perfumed stuff on your face and body (search the bottles labels for ingredients) and maybe use something such as Eucerin eucerin.co.uk - check out their website as they have tons of stuff for face and body for rashes etc. I know some peeps on here swear by other stuff so have a look... but I know lots of their body and face specific stuff has changed some friend's lives who had all sorts of issues, especially on their face which upset them so much.
And also... only use something unfragranced to wash you clothes/towels/ bedding etc.. such as Boots For Sensitive washing detergent... and ensure your washing machine is rinsing properly... you have to see water without bubbles sloshing around in the last rinse before it's clear of nasty detergents that otherwise you'll be sleeping in, wearing, wiping your face with. I do an extra rinse, and add water through the top compartment until I see water sloshing each rinse.. I have to nurse my new useless water conserving washing machine to make it do it's job! And clean the detergent drawer regularly too - my friend's one was caked with detergent so I gave it a scrub round when she was out at the shops... she is working herself to death looking after her poorly in-laws who live with them plus a full time job.. so it's understandable she'd not noticed... but that was being put in the rinse too... so, er, it wasn't being rinsed.
Anyway, it's a Sunday... I've done my sermon 😆! Forgive me...🙃 I hope it's helpful.. not patronising! That's so not moi!
That sounds great! I am willing to try anything. I have to admit, I don’t drink a lot of water. Of anything during the day really. I don’t usually drink anything with meals! Maybe I have a glass or two of anything liquid all day long! I know I need to hydrate more.
Oh... well you're in for a treat... It'll help your skin so much.. flushing out our toxins... in your skin and your whole body... you'll poop more too.. and sleep better... all of which affects skin. What I suggest (if I may 😆, and is what others did on here to make sure they knew how much they were drinking) is using a litre bottle of something you've used up the contents of, and fill that up (and drink!) three times a day.. but obviously reduce your drinking after 3hrs before bed time as otherwise you'll be up all night weeing (well, I am anyway, but that's another story!). Ys, you'll be in the loo more.. but you'll be so pleased with the changes to the rest of you I'll bet! do let me know how it goes.... I'd love to know. Do the rest of the stuff too eh, especially the skin care and washing detergent/rinsing etc stuff... as all this will really be affecting your skin. All the very best for now! D x
I've been diagnosed with Lupus since 2004 and had been getting some foot pain since late last year. An MRI last month reported that I have osteoarthritis secondary to flat foot. Presumably this means caused by flat foot. I had had an xray about 3 weeks prior to that which showed nothing so it may be that you need an MRI rather than an xray.
My blood tests rarely reflect how I feel, so I do understand your frustration. And 400mg a day of Hydroxychloroquine is not a small dose. As others have said it should be based on weight.
Sorry to hear about all your problems here. I was diagnosed with osteoarthritis in my knees before I was diagnosed with Lupus which took years to diagnose. I have osteoarthritis in my fingers on one hand now as well with some bent fingers. I don't know if this is connected to Lupus or not I'm afraid. I hope you find some answers.
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