Bronchiolitis and RA - does anyone have experience of this?

purdeyblackcat
purdeyblackcat Member Posts: 7
Hello,
This is my first post. I would really like some help and advice, I hope someone here can help me.
I have had RA for 10 years and have been on Methotrxorate since 2005. In late 2008 I started having breathing problems which have been getting gradually worse. It has taken some time, but finally I have been sent to see a lung specialist and after ordering tests he told me on Friday that I have Bronchiolitis. He presribed an inhaler and I shall see him again in 2 months.
When I got home I looked the condition up on the internet and was shocked and upset to read that the condition is fatal and (on one website) can kill you in 3 years. I know you should not believe everything you read on the internet, but this really upset me and I couldn't beleive that if this was true the lung specialist would have told me about it, or maybe he just didn't want to scare me? I have tried to get in touch with him to ask but cannot get hold of him. I phoned my GP but it seems Bronchiolitis is not a common known condition and the GP couldn't tell me anything about it.
Does anyone on this forum know anything about this condition? I have been worrying all weekend about it. Please tell me, good or bad, if you have had experience of it. Thank you.

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You certainly shouldn't believe everything you read. Bronchiolitis is an inflammation of the bronchioles and it is a self-limiting illness, ie it clears as treatment progresses and the infection is knocked on the head. It is caused by a viral infection, the RSV, which is most common in winter and early spring: it's a virus that is linked to influenza etc. It is more common in babies than adults. That's what I found on the internet, anyway. The inhaler should do the trick (you don't say what sort, my guess would be it's from the ventolin family, a bronchial reliever) and that should help to ease the symptoms. The meth will reduce your immune system, so perhaps you should seek advice about stopping that until the infection has cleared. I am on weekly injected meth and my hospital won't let me have it if I am poorly. I hope this helps and I wish you well. DD

    PS A sudden thought - you may be eligible for a flu jab, if you don't already have one. Ask your GP and see what they say.
  • purdeyblackcat
    purdeyblackcat Member Posts: 7
    edited 30. Nov -1, 00:00
    Thank you DD for your reply. I am not sure if the Bronchiolitis that is caused by RSV is the same thing as I have got, as the lung specialist told me it was either caused by RA or a specific type of asthma, but it is impossible to say which. I have not got my inhaler yet (as the hospital pharmacy had run out) so I am not sure what sort it is yet, but I hope it will relieve some of the pain when breathing.
    From what I read online of the RA + Bronchiolitis (which I know I shouldn't always believe) is that it is a very rare condition. Certainly my GP knows nothing about it, and I can't find any reference to it on any of the arthritis websites. Also when I first complained to my RA specialist back in March 2009 he didn't take my breathing issue seriously at all. So I am hoping I am worrying about nothing.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 20. Sep 2010, 06:17
    I've had asthma for years, and bronchitis is always a risk, hence the fact that I have had a flu jab for years now rather than risk developing that. I really think it is to do with a compromised immune system, and not the RA, which is probably why you cannot find any reference to it. The RSV is, I think, the most common cause of it. If you are really worried, then ring and ask to see him again, so he can put your mind at rest, or check with your GP. YOur rheumatologist has not done well by you at all - he should have listened to your concerns in 2009. Mine always checks my breathing with me but I suppose that could be because of my history of chronic asthma. DD
  • purdeyblackcat
    purdeyblackcat Member Posts: 7
    edited 30. Nov -1, 00:00
    My RA specialist did advise me once not to bother with flu jabs funnily enough. He said as a doctor he was obliged to obey the party line and encourage it, but he personally really couldn't see any point in doing it.
    My family ask every year whether or not I am having a flu jab. They seem to think my GP ought to be offering them as I am vulnerable to infection, but no one at my surgery has mentioned it to me.
    I have been trying to get in touch with the lung specialist to ask him to clarify. I have had no luck tracking him down yet, as he is at different hospitals on different days/weeks. So hopefullt he will answer one of the messages I have left for him.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You have been on meth for five years and yet not had a flu jab? It amazes me how much care advice varies from area to area. My hospital tell all their rheumatology patients to get one done, as we are on such lowering meds. If you had had the flu jab would you have the bronchio (I've forgotten it's name!) now? I know that is a pointless question to ask, but it does make one wonder. What other meds do you take? I'm on humira, meth, oral steroids and sulphasalazine. I have just stopped naproxen as I am fed up with thrush mouth. That's clearing already! I hope you can track him down, purdey. DD (who has PA - or did I tell you that already? Fuzzy with pain today, sorry)
  • helpline_team
    helpline_team Posts: 2,786
    edited 30. Nov -1, 00:00
    Hi Purdey black cat

    Thanks for your posting.

    I see you have had a number of very informative replies from dreamdaisy already.

    The information we have on bronchiolitis comes from the NHS choices website. See http://www.nhs.uk/Conditions/Bronchiolitis/Pages/Introduction.aspx.

    It mentions that it usually affects babies and young children and clears up within a few weeks. You are doing the right thing in checking up with your doctor/lung specialist to see exactly what you have and the most effective medication or way of dealing with this.

    I hope this helps.

    Regards

    Nick
  • purdeyblackcat
    purdeyblackcat Member Posts: 7
    edited 30. Nov -1, 00:00
    Thanks to both of you for the help and reassurance. I managed to talk to the lung specialist this afternoon and he was able to reassure me that the Bonchioilitis I had was NOT the fatal one, which is very rare. So huge relief. I won't go searching on the internet again, I will ask more questions of the specialist in future!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I am so pleased - you poor thing, you must have been going thro hell! Now you have joined the forums I hope we will see you posting elsewhere - we are a fund of knowledge, wise advice, occasionally silly advice (in jest, of course) and we all recgonise the struggles that arthritis can bring. Keep in touch. I wish you well and I hope the inhaler brings relief. DD
  • purdeyblackcat
    purdeyblackcat Member Posts: 7
    edited 30. Nov -1, 00:00
    Thanks Dream Daisy, I never knew about these forums before. I shall certainly be haging around and chipping in if I think I can help. I have been having a read of some of the messages, it seems like a lot people are much worse off than I am with my RA. It is good to know there is a place we can come to to chat and offload.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I only recently found here and it has made such a difference. My arthritis started in 1997, treatment started in 2002 with sulphasalazine, and it wasn't diagnosed until 2006. To find other people in very similar boats was a huge relief and I greatly treasure this place. Everyone here knows what it is like and the help, suport and info one receives is amazing. Stick with us purdey, get to know us and we can get to know you. LWA is for the serious stuff to do with arthritis, chit-chat is more casual, working matters and the others are self-explanatory.

    I meant it about the inhaler: I want to know (cos I is very nosey!) whether I am right about the ventolin reliever type and I also want to know (cos I know how miserable breathing problems are) whether it helps. You take care now. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Well, it's two days later. How are things now purdeyblackcat? Any better? I sincerely hope so. DD
  • purdeyblackcat
    purdeyblackcat Member Posts: 7
    edited 30. Nov -1, 00:00
    Hi DD,
    Thanks for checking up. Yes, I got the inhaler yesterday, only used it 3 times so far (it is Beclometasone Dipropionate). I have been out with my family today and felt a lot better whilst walking around, a lot less pain when breathing, so I am hoping a combo of the inhaler + keeping a relaxed attitude is helping.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Right, beclo is a preventer rather than a reliever, so make sure you take it as instructed. I have both, ventolin and beclo. I am glad to hear things are on the up for you - keep in touch, I will keep asking! Look on the LWA forum tho, I will post there. I wish you well. DD
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    So, purdey, how are things now? DD

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