Possible Lupus?

[pancake123]

Hi everyone, I have Rheumatoid Arthritis and have had some issues over the last two years. I have had gastro issues and problems with my skin (rashes on my face that come and go) and a soe up high inside my nose which is said to be harbouring a staph infection but it is resisting the naseptin cream and two lots of antibiotics so now being referred to ENT. My question is that although I without doubt have RA could I possibly have Lupus? I have had Some bloods for this a couple of years ago and bloods anti Ro and anti Lo and my Rheumatologist said they were normal. Could I have another autoimmune disease without it showing in my blood work? Many thanks

[Georgie-girl]

In my opinion yes you can. I was sero negative sjogrens for years and even now only have borderline antibodies. My RF though is extremely high. A good rheumatologist will diagnose on a combination of things and not just blood work so hopefully you have a good one. Maybe ask him to repeat your bloods again now as things can change over 2 years.

Good luck and let us know how it goes

[pancake123 in reply to Georgie-girl]

Thank you. My Rheumatologist is not interested at the time of the flare up of numerous issues I was hospitalised and told by my GP’s and Gastro that it sounded like a systemic illness so reluctantly my Rheumatologist did the tests but there is no way he will repeat them as he was reluctant to do them in the first place. He will and does only concentrate on issues with my hands and feet. He just tells me to see my Gp. I luckily have a good GP who has said he thinks I am right in feeling all the issues I am having are related to one another and he said he will refer me to another hospital for Rheumatology and for ENT and possibly a biopsy on my nose. As it seems nobody looks at the bigger clinical picture..........so frustrating. Thank you again for your reply!

[Georgie-girl in reply to pancake123]

I'd ask my GP for another referral to a different rheumy. You are entitled to a second opinion and the one you've got doesn't sound like he's doing much at all.

[pancake123 in reply to Georgie-girl]

Yes my GP said he will write a new referral to a different hospital so I hope I am not jumping from the frying pan into the fire.........can I ask what your Sjorgen’s symptoms are? I feel that this is what I could possibly have alongside my RA. Have you ever suffered from upper abdominal/rib pains? Had scopes done upper and lower and Ct with contrast at the time and all my internal organs liver/pancreas/ lungs were all good but it did show that despite not eating and opening my bowels I had significant fecal loading. They said at the time I had an unidentifiable virus but this was the start of the continuing symptoms. Thanks again!

[Georgie-girl in reply to pancake123]

My symptoms? Don't know where to start. Apart from the usual dryness everywhere and arthritis , it affects me neurologically. My nerves are the most affected. Vision, hearing and balance; bladder and bowels and swallowing, breathing irregularities caused by small airway inflammation as well as aches and pains and muscle and jpint issues. The list is endless. I get numb patches all over and have trouble controlling my own temperature. Lots of autonomic issues and small fibre neuropathy.

[pancake123 in reply to Georgie-girl]

Thank you Georgie girl, that sounds familiar. I have been having tingling and numbness in my hands which wakes me up from sleep although I had some nerve conduction tests and they were ok. Who knows what’s going on with me............at least I am now being listened to.

[Georgie-girl]

That's the main issue isn't it. Getting someone to listen and believe you're not going nuts. That took me a few years. The tingling is really annoying and sounds very similar to me. My nerve tests are still ok though and I'm told that the nerves are not necessarily damaged but just aggrevated and that's why the tests are normal.

[pancake123 in reply to Georgie-girl]

It’s also really good to hear others who have had similar issues with diagnosis because when the tests come back negative even I start doubting myself!

[Fennella02]

I think it's possible to have any number of auto immune conditions going on simultaneously or sequentially. Lots of us here have a cocktail of symptoms.

You can see another rheumy for a second opinion without losing the original one if you don't want to.

Do some research and find a rheumy who comes recommended for thinking out of the box.

Sorry it's brief - school run time xxx

[pancake123 in reply to Fennella02]

Thank you that’s really helpful to know! I did worry that I may see another Rheumatologist and they may be worse then I would be stuck!! I have plumped for Addenbrooke’s Hospital as I have heard good things about their Rheumatology department. Xx

[Hidden]

Hi there Pancake. I was initially diagnosed with seronegative RA in 2011 on strength of stiff, swollen, painful joints in hands, wrists and knees and high fluctuating inflammatory markers. After a few years the inflammatory joint pain went away leaving no erosive damage but plenty of OA.

However the neuropathy and ENT/ Sicca problems continued as did severe allergies to drugs, rashes, nasal sores and bleeds, dry cough etc. Then I stopped sweating, couldn’t swallow well or smell and had a consistently foul rancid taste and burning lips and gums. By this time I was on Prednisolone and my very RA focussed Rheumy bid me farewell when I relocated saying he’d referred me on to the rheum of my choice (special interest in Sjögren’s supposedly) as having inflammatory arthritis and other unspecified autoimmunity.

Rheumy 2 dismissed connective tissue disease out of hand because by then all my antibodies were negative (i was still on steroids though!) and queried his colleague’s RA diagnosis, ruled out Sjögren’s because of normal Schirmers and not dry mouth. He couldn’t account for the very widespread and painful small fibre neuropathy or my autonomic GI problems at both ends or my high inflammation makers and evidence of a systemic process in brain MRI and spinal fluid. But he said these not his bag - adamant that normal antibodies meant no connective tissue disease.

Last year I relocated again to neighbouring county and new hospital. Once clear of all meds my ANA showed very positive and other high IgGs so was offered lip biopsy - had numb tingly lips and gums and face anyway so nothing to lose! Had 100% positive result for Sjögren’s.

The neuropathy is still my worst problem as Sicca just ongoing and I’m under neurologist and rheum, waiting to see gastro, respiratory and OT for severe fatigue and balance problems caused by numb feet and ankles (no tendon reflex), dietician and my oral consultant.

It is my belief, and no one contradicts this so far, that I’ve had Sjögren’s all along and since I was young along with Hypothyroidism. I’m now paying the price in my jaw (roots and old cavities) and face and my autonomic and peripheral nervous systems and vascular too. My BP fluctuates all the time which is causing early kidney problems and I feel vindicated for pushing for rediagnosis although Sjögren’s is much more hopeless and untreatable than RA. And of course it’s very possible to have both - the idea that secondary Sjögren’s is milder is a myth. You could have your RA well controlled but there are no targeted meds for Sjögren’s so it can just progress regardless. And RA and Sjögren’s are the most common pairing - they just call this secondary Sjögren’s because RA is more treatable and gives you access to the best drugs.

Hope Addenbrookes serve you well.

[pancake123 in reply to Hidden]

Thank you Twitchytoes your reply is really helpful! I was diagnosed with sero negative RA initially as bloods were negative but body scan highlighted inflammation and érosions consistant with RA. My bloods eventually showed positive after a few years I am also anti ccp positive so my consultant said that I have RA but because my disease pattern right from the beginning has not fitted with the usual RA ‘pattern’ (not symmetrical joint involvement and knuckles joints rather than the top joints. I have swan neck deformities in a few fingers. I have I believe nerve issues and a dry mouth and dry nose. I have odd red bruises that come on my hands and feet (only a few not a rash) that appear during a flare and then disappear the next day or so. I have a constant vibration in my left foot and a this tingling or the best way I can describe it is the feeling of having butterflies in your tummy but in your hands?! And it wakes me up from my sleep. I have TMJ which causes me an indescribable amount of pain and I am frightened sometimes when it flares that I will choke as I struggle to chew my food. When my RA is well controlled my jaw is also much better. My RA consultant is not interested. I am much more positive now I have been referred to Addenbrookes for a second opinion as if I do have any other autoimmune disease going on they are the ones who will find it hopefully! I am on Benepali at the moment which is a biological and I have on the whole felt much better. I have also been on Sulfasalazine, Methotrexate and Hydroxychloroquine. I may ask for Hydroxy to be added back in to the mix as I felt that had a positive effect. Thanks again for taking the time to reply xx

[Augustus-6]

I have ra and i have similar symptoms to a friend with lupus. I wont take dmards or biologics ive had it 15 years. I used to have shots of steroids in the early years but for past 2 years i take prednisilone 5 mgs tho i increase to 20 mg with a flare. Ra is horrendous and has a side effect could be heart disease which i have but there are plenty with heart disease who dont have ra.

[pancake123 in reply to Augustus-6]

Thanks for your reply, I am on Benepali which is a biological drug and I have failed two dmards. The Benepali has been a life saver for my RA I don’t know how I would manage without it. I have been unable to take it for a couple of weeks as I have an infection in my nose and I am struggling already! I think we have a higher risk of heart disease with RA due to the RA itself and the medication we have to take. Good luck!