A little help please

A little help please

Hi,  wondering if any of you kind people can give me some advice. I've had arthritis and swollen painful hands for years, along with worsening asthma for about years and on top of this I've developed roseacia in the last year or so. All fine except lately my health has really deterrated. I've had pneumonia 3 times in the last 6 months, almost constant pleuritic pain and constant tiredness and depression. Could this all be a coincidence, as I'm starting to wonder if it might be lupus? Auto immune disorders do run in the family. I've attached a pic of the rash below. Sorry about the mug but currently laid up with pneumonia and pluerisy. 

Tia xx

14 Replies

  • Hi Tia. I don't have a diagnosis of Lupus myself - but I do have RA and hypothyroidism with add ons. Your symptoms sound lousy and Lupus-like to me but also very RA-like. People with RA are also very susceptible to chest infections and rosacea and it usually attacks the small joints in hands first. There is also Psoriatic Arthritis which can make hands very swollen and cause facial rashes too. 

    Have you seen a rheumatologist yet? If not I would ask your GP to refer you to one ASAP. He or she may also take bloods to see if you have positive autoantibodies for Lupus or RA. I had severe eczema and alopecia right up until my menopause and I'm sure they were part of my autoimmune profile. A dermatologist would probably be able to say whether your facial rash is Rosacea or Lupus related if you are already seeing one. I hope your pleurisy and pneumonia ease up very soon. 

  • Thanks so much for the answer twitchytoes. That's interesting as my mum had RA and m yet I never considered that one. The problem is my symptoms are being treated as asthma related only, and asthma doc says the rash is due to all the oral steroids (which they may be). But the constant infections seem wrong to me. Also I'll go through a really healthy patch for maybe a month then stress kicks up (my son has autism) and overnight I'm really ill, like a different person. Sorry about your RA by the way. I hope the meds are keeping it under control for you. Xxx

  • I had similar problems and was told I had asthma but every time I went for annual review they were confused as I didn't fit the tick boxes. I had been tested for auto immune disease which was negative. Four years later I had another bout of pancreatitis and after a lot of tests they announced I had lupus with various other auto diseases and fibrosis...This being the cause of  constant chest infections etc.

    In this day and age I don't understand why it is still difficult for the professionals to work out auto immune disease. My daughter is going through same process. The rheumatologist said he was discharging her into the care of the specialist nurse for hypermobility syndrome and fibromyalgia suddenly a letter arrives from him saying he's changed his mind and needs to see her again as her bloods have come back showing positive on auto immune!

    I forgot to say, i no longer have diagnosis of asthma 😉

    I would ask the GP for a referral to a rheumatologist (if you aren't seeing one)as well as a dermatologist. Sometimes we're given a label and it's too easy not to look at the wider picture.


  • Thanks Chris21, I'm back on Wednesday and will have a word with them. They are talking about arranging a referral to the hospital due to the amount of oral steroids I'm having to take, but that would be an asthma specialist! also, they're talking about making sure I take my meds properly (honestly it's powder inhalers and tablets - how wrong can you go?) funnily enough, they also mentioned the fact that I had no wheeze on my last appt, just fluid and crackles etc! I may need to make an appointment with a doc who's not the asthma specialist I think.

  • Also really Sorry to hear your daughters having a tough time Chris, hope she gets the help she needs x

  • Thanks, she is but it's such a slow process, she started off with depression and all her aches and pains were put down to that! After I stepped in and had an argument with her GP who said what do you want me to do? She got referred to same consultant as me who knows my history and he has been great but it all takes time to get through all the results. Needless to say she has changed surgery too.

  • You definitely need to see a chest consultant that isn't obsessed with asthma. I never wheezed either. Good luck x

  • Thanks - I'm not on any meds now because of severe allergic reactions to four of them. But my RA seems to have been chased off and is non-erosive so far. Apart from killing off many of my small nerve fibres, which I'm told is very unusual. This is why I come here rather than the RA HealthUnlocked because people seem to understand my weird type of RA better on this community. My symptoms are always treated as coincidental or as part of my RA which is supposedly in spontaneous remission so I get very confused by this contradiction. It's annoying when doctors contradict each other and even themselves. I know lots of people with eczema, asthma and RA and also some with Lupus. I think being very allergic can trigger autoimmune diseases because our immune systems are already overreacting be producing too much histamine. But this is just my non-medic's hunch! 

  • I'm glad she's finally getting some help. And I'll try to push them for blood tests and/or a referral next week and see what happens. Thanks for all the advice. 

  • I do get that facial rash with taking high doses of steroids, prednisone usually.  But pleurisy I've had before and it's uncommon in heathy adults so it sounds like something autoimmune for sure!

  • Hi mjm,

    Definitely worth having tests done for Lupus and/or RA. I had very similar problems with my lungs way back (35yrs ago) when I was first diagnosed with Lupus. Having said that, the Rheumatoid Factor didn't show in my bloods until about 5 years ago and it was very obvious that I had it, so a negative result doesn't mean that you don't have the disease! 

    I have both Lupus and RA and my Lupus had been very quiet for a very long time until recently while my RA is proving very difficult to control. Although they are similar, I find a big difference in my symptoms between them both and can easily tell whether its the RA or Lupus that is playing up. 

    Good luck with diagnosis and I hope you feel better soon. x

  • Sorry, I called you mjm - Hi Tia!

  • Thanks all of you. So lovely to get all this advice. I think I might need to see a different GP next week and see if I can them to agree to either run some bloods of refer me to a rheumatologist. My usual GP won't even discuss it despite the fact my mum wasn't diagnosed with RA until she was 60 and had total kidney failure! Xxx  

  • Hi M-j-m1, have you been to a doctor to discuss getting tested or referred? 

    If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

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