Just wondering ??

[Bazzypants]

Hi has anyone on here suffer from RA have lupus ?? apart from the butterfly mark on face can you tell me any other symptoms and how where you diagnosed. xxxxx

[Hidden]

I believe I had Discoid Lupus when I was younger although it could just have been Hashimoto's Hypothyroidism. I used to get rashes across my face frequently and my hair fell out several times and I struggled with many general health problems - often on steroids for long stretches and had eye and ear problems and palsy/ dizziness on and off at intervals. I have only had RA for four years but saw a connective tissue professor last May and he told me that Lupus generally improves once the child bearing years are over but if I'd had it I would have organ involvement by now so he didn't think my problems were Lupus.

However I use the Lupus UK HealthUnlocked because I have so many problems that people with Lupus also suffer and there are people there with RA and SLE who have taken many of the same drugs as I am being put on now - namely Gaberpentin, Duloxetine and soon to be Azathioprine. My rheumy referred to it as a multi-system autoimmune disorder the other day but he still thinks it is all part of my RA rather than a separate connective tissue disease. I don't really have swollen or painful joints anymore. Instead I have a small fiber neuropathy and TMJD, nose bleeds and sores and upper GI problems with very dry eyes and circulation issues (Raynaud's). All problems that are more associated with Lupus and Vasculitis than with RA.

[Bazzypants in reply to Hidden]

Thank you so very much Twitchytoes, for all that information seems you have suffered a lot over the years and are still now. The reason I was asking about lupus is because I have noticed over the last few months that I get breathless more quickly and I have a similar rash to the lupus one over parts of my body but not on the face. I have had a x ray the other month so I know its not anything sinister in my lungs. I do hope you get yourself sorted soon RA is a lot to cope with but having other illnesses on top is no picnic. xxx thanks again for taking time to respond its nice to hear what others have to say rather than seeing it so black and white. xxx

[Hidden in reply to Bazzypants]

Earlier today I spoke to a friend who has Bronchiastasis and thyroid disease. She said that some forms of lung disease don't show up on X-ray - only on MRI. Paradoxically I was talking to another old friend in the doctor's waiting room yesterday - she has very advanced breast cancer. She told me that they said she was in remission on the strength of MRI of her chest but this didn't reveal that the cancer had spread to her breastbone and lymph nodes - x-ray eventually did.

So I'm a bit wary of doctors ruling things out on the basis of test results rather than symptoms now. I have a "bit of pneumonia" just now and haven't had the results of my chest xray last week back yet and the doctors are all blaming a winter viral infection - despite the fact I had the flu and pneumovac jabs. But even if it's clear I'm told by a friend who has Vasculitis that conditions such as Bronchiastasis and Vasculitis (have you thought about this one yet?) often don't show up - and require experienced specialists to recognise and diagnose them. There are so many possiblities and overlaps with autoimmunity that's the trouble!

[allanah]

I agree with joining lupus uk, they are a wealth of knowledge.

I have been very under the weather feeling ill, unusual bladder problems, pain in chest , rashes that are c shaped, on arms and face , dry skin Andy doc is thinking drug induced lupus.

They check with blood tests but like RA occasionally it can be sero negative so they will go on my clinical findings ., what I look like.

My Rheumy did test me for lupus at diagnosis ANA bloods which were negative then but they think some of my drugs may have set it off.

Hope you get answers soon .

[Bazzypants in reply to allanah]

Hi allanah, I don't think I have ever been tested for it myself I only found out a few months a go that I was RA postitive and I had to ask lol. I didn't even know until coming on here last year that there was such a thing as sero negative and positive RA. I am due to see the RA team soon an I have a few questions for them. Thanks so much for responding all the information people give is so very important. Hope very much that your keeping as well as possible. xxxx

[Hidden]

Hi, I got RA overlap SLE. I was diagnosed with RA in 2009 and in 2014 january they diagnosed with SLE. I do get the butterfly rash, joints pain, muscles pain and stiffness. Last year january I had pericarditis and they did blood test( immunology test) and I was diagnosed with SLE. I had rituximab infusion last year in March and taking MTX 20mg once a week. Afterwards my rheumatologist added Planequil 20mg once per day. If u need any more info send me a msg. Take care

[Bazzypants in reply to Hidden]

Hi amiraalexander, Thank you also for taking the time to get back to me, I am at the moment taking Humira injections and was feeling quiet well until just the other day despite the skin and breathing problems starting a few months ago as I said I had an x ray and that showed nothing on the lungs thank god, but my skin is not right ive sore eyes most of the time and have been suffering with eye infections, sorry I sound like a right moaner lol. Anyway I am very glad in one way that you have a solid diagnosis and have be given treatment I hope that it works well for you. Will write a post when I see my RA team tell you all what they say. Thanks so much for responding ive some info to mull over. Take care. xxx

[Hidden]

I was on Humira before I had the pericarditis, myself I was doing great on it. But just suddenly I developed the pain in my chest and having shortness of breath. They did chest X-ray but could see anything wrong me. My rheumatologist requested EHCO which confirmed pericarditis. But my rheumatologist recommended I stopped the humira immediately. And in March I was given rituximab which treats both RA and SLE.

[Bazzypants]

Hi amiraalexander, You seem to have a very good consultant, not to say that my one is bad but he does not seem to want to test or scan or do anything other than x rays. I find this so interesting and I am very pleased you shared this as they say knowledge is power and sometimes when you go to see them at the hospital you need that info in order to ask the right questions. xxx I do hope the meds your now on help you to do great again. xxxxx