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Breathing issues...

Discussion in 'Living with lupus' started by mea, May 12, 2016.

  1. mea

    mea mea

    Wondering how common it is for lupus patients to have breathing issues.

    Ever since onset of symptoms years ago I have stated to doctors that my breathing felt different.Of course all test showed normal and lungs sounded clear, so no problem right. :rolleyes:

    Well this past year the issue has gotten worse,people kept commenting to me on how wheezy I sounded when I laughed.Happen to mention this to gp who said lungs are clear and laughing wheeze is normal...what? apparently i've been abnormal most of my life because I never had it until this autoimmune stuff started,yeah right.
    By late winter whenever I went outside in the cold my breathing got worse,prescribed inhaler which made breathing easier but never got rid of the wheeze.This past week I saw my rheumy who noticed the wheezing right away and asked how I was feeling.Told him about the awful tiredness,on iron meds but don't think it's from the low hem as it's been a lot lower and have not felt this bad.Hair has thinned a lot from last visit and more hand swelling,kidney function still good but liver test are up so he thinks I need to go on steroids again in order to help settle the disease.Starting me on a low dose after chest x-ray.
  2. x_claire_x

    x_claire_x Moderator

    Hiya... it is very common, I am glad he is investigating and starting with a chest x ray; if that doesn't satisfy him he may order a CT scan of your lungs just to be sure all ok. I also wonder if you have annual cardiac scans ? Good care to do so. Also what meds are you on to treat your Lupus ?
    Sorry I am the master of questions !!..........Claire
    wolf1 likes this.
  3. mark176

    mark176 Active Member

    I would also add that it is worth getting a full lung function test done. I had one of these just before xmas, they are very detailed and will show up all sorts of problems. The x ray, the doctors just look at quickly.

    Kind regards
  4. lazylegs

    lazylegs Moderator

    In the event the lungs are clear you might consider having the esophagus checked out. Reflux can sometimes be the cause of a wheeze.

    Take care,
    Fem and wolf1 like this.
  5. mea

    mea mea

    Hi Claire and thanks, no scan but have had an echo done which showed slight leak in one valve but no murmur so they don't think it is a problem..will keep a check on it.He has asked me to go on low dose aspirin for heart protection as we are at high risk of heart disease with lupus as well as my strong family history ( father & brother both have had quad bypass by ages 40 & 50 ),also take metoprolol for high bp.
    For lupus I take anti-inflams, plaq and imuran...also take the imuran for the AIH.Next week will add the steroid after x-ray.Using inhaler while I wait,helps a lot but doesn't fix it.Hope this is not another new normal for me.:fingers:
  6. mea

    mea mea

    Hi Mark, rheumy said we would talk about it more at next appointment after he sees how I respond to treatment.Hope your test didn't show up anything too serious and you are feeling better.
  7. mea

    mea mea

    Hi Lazylegs will keep this in mind as I do take tecta for stomach protection and gerds although have not been having any symptoms like heartburn or reflux.Think this is more lung related as sometimes I have little catches when breathing in deeply or when yawning or certain movements.Think there is a touch of pleurisy on times and anti-inflams do seem to help.
  8. catcove

    catcove Junior Member

    Hi mea, I've been dealing with some similar issues. Mine manifest as hoarseness for over 1 1/2 years. It's distressing because I like to sing and also, I answer phones for a living, therefore I must speak. I do have a hiatal hernia and take omeprazole daily for many years. I may not notice any heartburn, but after seeing an ENT, I was told that I have silent reflux that can irritate the vocal cords. I have taken some of her advice to improve the so-called reflux with no improvement. I'm not actually convinced that this is what is happening to me. I have been told to get a chest x-ray but have not taken the time to do so. My GP gave me an inhaler. Nothing seems to work, I'm still hoarse. I'm investigating the affects of lupus on the cricoarytenoid joint. I hope they figure out what is going on with you. Feel better. Peace, catcove
  9. sheilakdavis

    sheilakdavis sheila

    I have they said anything about sjogrens? I have it and it makes my voice go hoarse at times. I also have hital hernia and acid reflux.

    Sent from my iPhone using Tapatalk
    catcove likes this.
  10. mea

    mea mea

    Hi catcove, sorry you are having this issue.I don't have any hoarseness myself, just wheezing and short of breath with movement or when talking.Have had x-ray done and will start the pred tomorrow.Hoping it helps and I start to feel better soon as I feel drained and exhausted,if not rheumy said to call and he will see me sooner.Hope you get answers and help soon for your problem.
    catcove likes this.
  11. mea

    mea mea

    Update....chest x-ray was normal and started pill pred and steroid inhaler a couple of weeks ago and starting to feel a bit better.Exhaustion has greatly improved, pleurisy stitches have gone and wheezing has lessened as well as swelling in hands and shoulders not as bad.Waiting on lung function testing to see if we can get some answers.:D Glad to be feeling better and up and about.
    wolf1 and x_claire_x like this.
  12. debatat

    debatat Moderator

    I am pleased to hear that you are feeling better, and hope that the lung function tests provide some answers.
    mea likes this.
  13. mea

    mea mea

    So...had my lung function tests done and it showed both an obstructive and restrictive pattern:( , looks like the disease is now also affecting my lungs as I had feared. Now adding steroid inhaler,rescue inhaler and pred to my daily pill diet...Over next several weeks will meet with Neuro ( more ms testing ) and rheumy and the rest of my drs. to see where I go from here.

    Anyone here have both patterns on lung function test?
  14. keebler

    keebler Moderator

    Hugs Mea.:grouphug:
    It's good your inhalers and pred daily pill are working.
    I cant be of help with you about lung function tests.
    Take care,
    mea likes this.
  15. x_claire_x

    x_claire_x Moderator

    I have pulmonary fibrosis and have lost half my lung function...but I barely notice it to be honest so far...due next set of lung function tests in October...not been described as restrictive/obstructive so would be good to know what they mean by that for you .

    Hope they come up with a good plan...take care...hopefully the meds will help a lot................Claire
    mea likes this.
  16. mea

    mea mea

    Hi Claire, sorry you have lung problems as well but good to know it is not causing to many problems for you...Hope your next tests go well. What meds are you taking for the lung problems or is it the same ones you had been taking already for the lupus.?

    Restrictive lung disease is when your lungs can't expand enough to get enough air in ( Pulmonary Fibrosis is one example of this type ) and Obstructive lung disease is when you can't exhale all the air fully from your lungs ( such as Asthma or COPD )
  17. wolf1

    wolf1 Registered

    Sorry to hear you are not well. Hope with the treatment you are having starts working for you really soon.
    Take care
    mea likes this.
  18. debatat

    debatat Moderator

    Sounds a tough disease to deal with, I hope they can help you.

    Take care
    mea likes this.
  19. x_claire_x

    x_claire_x Moderator

    Hi Mea...that makes least the obstructive part can be treated, and hopefully effectively.
    The meds are the same for settling my disease pattern as that is what caused the loss of lung function. It has not moved much at all since being controlled....out of control I lost a whopping 35% in a year-eighteen months.
    I have mctd, Lupus predominating...and many with that mix carry a degree of lung damage according to my Rheumy.

    I hope your appointment is fruitful and they come up with a good action plan to ease things for you....will be thinking of you Mea.

    take care.............Claire
    mea likes this.
  20. mea

    mea mea

    Thanks Claire, good to know it can be brought under control.:fingers: for us both....

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