Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Hello Marie, Sorry if I alarm you but unless things rapidly improve but.. From your description I would not let matters rest and wait and see.... I am a retired doc and while this area was never my field from your symptoms I don't think your primary's suggestion to 'just' ride it out is appropriate unless he/she knows your blood oxygen sats etc are fine.. Infection is only one possibility. Pneumonitis (from inflammation ) would be another, but it does sound that for whatever reason your lungs are struggling to get enough oxygen transferred into your body at the moment. The scan could give good info but don't wait on it: if things don't improve quickly, contact your doc urgently or better still perhaps go to the ER. The body only has so much 'reserve ' in these matters, and you sound as though you are not responding fully to your steroids and inhalers, so you may need other help. Best wishes retired doc UK From: Marie Miley- <mrussell@...> Subject: [ ] RA and lung problems Date: Thursday, 4 September, 2008, 3:05 PM Is there anyone here with Rheumatoid lung disease? After having what has been dx as bronchitis for three weeks and still unable to breathe well on 10mg prednisone and inhaled corticosteroids, my rheumy has ordered a CAT scan and xray to rule out Rheumatoid lung disease. (This is after treatment with antibiotics, two breathing treatments, an 80mg depo medrol injection followed by 20mgs of prednisone a day for four days and 10mgs for another 20 days, and three different kinds of inhalers). There is a question as to whether or not I have pneumonia (I was on Enbrel) as well, but I have not had any fever at all and very little in the way of a productive cough. I have a dry cough once in a while, a lot of wheezing and tightness, some pain in my lungs, and once in a while I am extremely short of breath (nearly blacking out). Even on a number of different inhalers, I am needing my rescue inhaler 2-3 times a day after nearly three weeks of treatment. My primary thinks I just need to ride it out at this point, but my rheumy says if I am not breathing well on 10mgs of prednisone something is wrong. I have had asthma in the past, but it was very, very mild and required the use of a rescue inhaler perhaps once or twice a year. Has anyone else had a similar experience? ~Marie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 and group; I am so sorry you have suffered with your breathing and lungs hon. I have lung problems to. Not due to RA I guess anyway. I do have RA. You sure have went through a lot. gentle hugs Clora @...> wrote: > > Is there anyone here with Rheumatoid lung disease? After having what has been dx as bronchitis for three weeks and still unable to breathe well on 10mg prednisone and inhaled corticosteroids, my rheumy has ordered a CAT scan and xray to rule out Rheumatoid lung disease. (This is after treatment with antibiotics, two breathing treatments, an 80mg depo medrol injection followed by 20mgs of prednisone a day for four days and 10mgs for another 20 days, and three different kinds of inhalers). > > There is a question as to whether or not I have pneumonia (I was on Enbrel) as well, but I have not had any fever at all and very little in the way of a productive cough. I have a dry cough once in a while, a lot of wheezing and tightness, some pain in my lungs, and once in a while I am extremely short of breath (nearly blacking out). Even on a number of different inhalers, I am needing my rescue inhaler 2-3 times a day after nearly three weeks of treatment. My primary thinks I just need to ride it out at this point, but my rheumy says if I am not breathing well on 10mgs of prednisone something is wrong. I have had asthma in the past, but it was very, very mild and required the use of a rescue inhaler perhaps once or twice a year. > > Has anyone else had a similar experience? > > ~Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 and Group; I am so glad you commented on this matter chriss. I am not a doc but I thought he/she was being a little laxed about her condition. gentle hugs Clora > Hello Marie, > Sorry if I alarm you but unless things rapidly improve but.. > From your description I would not let matters rest and wait and see.... > I am a retired doc and while this area was never my field from your symptoms I don't think your primary's suggestion to 'just' ride it out is appropriate unless he/she knows your blood oxygen sats etc are fine.. > Infection is only one possibility. Pneumonitis (from inflammation ) would be another, but it does sound that for whatever reason your lungs are struggling to get enough oxygen transferred into your body at the moment. The scan could give good info but don't wait on it: if things don't improve quickly, contact your doc urgently or better still perhaps go to the ER. The body only has so much 'reserve ' in these matters, and you sound as though you are not responding fully to your steroids and inhalers, so you may need other help. > Best wishes > > retired doc > UK > > > > Is there anyone here with Rheumatoid lung disease? After having what has been dx as bronchitis for three weeks and still unable to breathe well on 10mg prednisone and inhaled corticosteroids, my rheumy has ordered a CAT scan and xray to rule out Rheumatoid lung disease. (This is after treatment with antibiotics, two breathing treatments, an 80mg depo medrol injection followed by 20mgs of prednisone a day for four days and 10mgs for another 20 days, and three different kinds of inhalers). > > There is a question as to whether or not I have pneumonia (I was on Enbrel) as well, but I have not had any fever at all and very little in the way of a productive cough. I have a dry cough once in a while, a lot of wheezing and tightness, some pain in my lungs, and once in a while I am extremely short of breath (nearly blacking out). Even on a number of different inhalers, I am needing my rescue inhaler 2-3 times a day after nearly three weeks of treatment. My primary thinks I just need to ride it out at this point, but my rheumy says if I am not breathing well on 10mgs of prednisone something is wrong. I have had asthma in the past, but it was very, very mild and required the use of a rescue inhaler perhaps once or twice a year. > > Has anyone else had a similar experience? > > ~Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Hi Marie - Sorry to hear you are feeling so bad. I pray the doctors are able to get to the bottom of it. When you said you have been on Enbrel, it reminded me of an article I saw on the Florida Today website this morning: http://hosted.ap.org/dynamic/stories/F/FDA_ARTHRITIS_DRUGS? SITE=FLROC & SECTION=US & TEMPLATE=DEFAULT & source=nletter-breakingnews I don't want to scare anyone, but it is definitely something worth looking into if you are taking any of the four Arthritis medications that are mentioned and are having lung problems. Keep us posted, Marie. Best of luck and prayers for a speedy recovery....Doreen > > Is there anyone here with Rheumatoid lung disease? After having what has been dx as bronchitis for three weeks and still unable to breathe well on 10mg prednisone and inhaled corticosteroids, my rheumy has ordered a CAT scan and xray to rule out Rheumatoid lung disease. (This is after treatment with antibiotics, two breathing treatments, an 80mg depo medrol injection followed by 20mgs of prednisone a day for four days and 10mgs for another 20 days, and three different kinds of inhalers). > > There is a question as to whether or not I have pneumonia (I was on Enbrel) as well, but I have not had any fever at all and very little in the way of a productive cough. I have a dry cough once in a while, a lot of wheezing and tightness, some pain in my lungs, and once in a while I am extremely short of breath (nearly blacking out). Even on a number of different inhalers, I am needing my rescue inhaler 2-3 times a day after nearly three weeks of treatment. My primary thinks I just need to ride it out at this point, but my rheumy says if I am not breathing well on 10mgs of prednisone something is wrong. I have had asthma in the past, but it was very, very mild and required the use of a rescue inhaler perhaps once or twice a year. > > Has anyone else had a similar experience? > > ~Marie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Abby, Did you ever get to talk with the nurse? Sweetie, I hope there is some way that you can get in to see the doctor. I sure don't want it to get worse. It sounds pretty bad with the fever. Let us know. I pray that you are better soon. Shirley > > Ugh. I've been having a deep cough, occ. fever and fatigue for the past 3 > weeks. I figured it would go away. No luck. I called my PCP office today and the > receptionist told me I had to come in to be seen- I can't. there is no way. > " Well they can't prescribe over the phone. " I had told her i wanted to talk > to the nurse. Just get me the nurse. She started triaging me- what color > mucous, etc. I said it was clear---- " well then it must be a virus, it has to be > green or yellow. " Not true I told her, green or yellow is often VIRAL. (i'm an > np). I told her I am taking enbrel (whats that? she asks). Why is she > triaging when she doesn't know anything????? I wanted to talk to the nurse- let her > triage and decide if I should come in or what to do. > > Abby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Doreen, What a article! I am praying this is not the case with any of our members. I copied and saved for future reference, just in case. Thanks, Shirley > > Hi Marie - Sorry to hear you are feeling so bad. I pray the doctors > are able to get to the bottom of it. When you said you have been on > Enbrel, it reminded me of an article I saw on the Florida Today > website this morning: > > http://hosted.ap.org/dynamic/stories/F/FDA_ARTHRITIS_DRUGS? > SITE=FLROC & SECTION=US & TEMPLATE=DEFAULT & source=nletter-breakingnews > > I don't want to scare anyone, but it is definitely something worth > looking into if you are taking any of the four Arthritis medications > that are mentioned and are having lung problems. Keep us posted, > Marie. Best of luck and prayers for a speedy recovery....Doreen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Abby and group; Awe Hon, I am so sorry. I don't know why she did that to you. I hope you can go in and be seen by the doctor you sound pretty sick. She didn't even know what enbrel was! And she was triaging you. Maybe the nurse was busy I have no idea. You need to see that doctor. My doctor does that to me sometimes. My regular doctor not the RA doctor. I hope you get the meds you need hon. Sorry a receptionst thinks she is a nurse. Where do they get trying that to people. If you can go to the doctor dont let this infection get worse. God bless you sweety. gentle hugs Clora > Ugh. I've been having a deep cough, occ. fever and fatigue for the past 3 > weeks. I figured it would go away. No luck. I called my PCP office today and the > receptionist told me I had to come in to be seen- I can't. there is no way. > " Well they can't prescribe over the phone. " I had told her i wanted to talk > to the nurse. Just get me the nurse. She started triaging me- what color > mucous, etc. I said it was clear---- " well then it must be a virus, it has to be > green or yellow. " Not true I told her, green or yellow is often VIRAL. (i'm an > np). I told her I am taking enbrel (whats that? she asks). Why is she > triaging when she doesn't know anything????? I wanted to talk to the nurse- let her > triage and decide if I should come in or what to do. > > Abby > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2008 Report Share Posted September 4, 2008 Hi Marie, Yes, I have been diagnosed with the beginnings of Rheumatoid Lung Disease. There was also some indication of mtx toxicity in my lungs. Since quitting mtx in late May, my O2 diffusion has improved. I still have some problems, but much improved. My rheumy and pulmonologist have both said that I must go on antibiotics at the 1st sign of any illness. I work in a school so it is just a matter of time. As I've gotten older (46), my asthma has also gotten much worse. I have had the pneumonia vaccine, get a flu shot each year and take Symbicort 2x daily. I'm also on 10mg prednisone, but hope to start weaing myself off of it soon. I wish you the best and make sure you are very proactive with your health. Tammy> > --- On Thu, 4/9/08, Marie Miley- <mrussell@...> wrote:> > From: Marie Miley- <mrussell@...>> Subject: [ ] RA and lung problems> > Date: Thursday, 4 September, 2008, 3:05 PM>> Is there anyone here with Rheumatoid lung disease? After having what has been dx as bronchitis for three weeks and still unable to breathe well on 10mg prednisone and inhaled corticosteroids, my rheumy has ordered a CAT scan and xray to rule out Rheumatoid lung disease. (This is after treatment with antibiotics, two breathing treatments, an 80mg depo medrol injection followed by 20mgs of prednisone a day for four days and 10mgs for another 20 days, and three different kinds of inhalers).> > There is a question as to whether or not I have pneumonia (I was on Enbrel) as well, but I have not had any fever at all and very little in the way of a productive cough. I have a dry cough once in a while, a lot of wheezing and tightness, some pain in my lungs, and once in a while I am extremely short of breath (nearly blacking out). Even on a number of different inhalers, I am needing my rescue inhaler 2-3 times a day after nearly three weeks of treatment. My primary thinks I just need to ride it out at this point, but my rheumy says if I am not breathing well on 10mgs of prednisone something is wrong. I have had asthma in the past, but it was very, very mild and required the use of a rescue inhaler perhaps once or twice a year.> > Has anyone else had a similar experience?> > ~Marie _________________________________________________________________ Want to do more with Windows Live? Learn “10 hidden secrets” from . http://windowslive.com/connect/post/jamiethomson.spaces.live.com-Blog-cns!550F68\ 1DAD532637!5295.entry?ocid=TXT_TAGLM_WL_domore_092008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Melynda and group; Awe Melynda, I hope Barbara gets better soon. I sure miss her. If you get to talk to her, would you give her a message for me?? If so here it is. (I am on prednisone, I am waiting for my humira to arrive from the pharmacy delivery. I feel great about a number 5. I hope the humira takes it to a 0.) The last time I talk to Barbara I believe i was in a pain range aroud 13 lol. So a 5 is very good. I hope Barbara is healing good soon. thank you so much Melynda. gentle hugs Clora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Abby and group; Awe. I am so glad you got to a doctor. I figured you was really sick. Maybe its time for a new doctor or someone needs to talk some sence into that receptionist. gentle hugs Clora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2008 Report Share Posted September 5, 2008 Abby, I am glad that you were seen by a doctor. Get some rest and I hope you get better really soon. Shirley > > Thank you for the kind words. I went to immediate care. The doctors office > never called me back. My doctor was out. > The immediate care MD took an xray to rule out pneumonia (it was ok) and > said I have a bacterial infection, gave me antibiotics, cough syrup, pain meds > and a note to get off of work. > > Abby Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 I have just gone thru an entire summer of pneumonia (3 times) and wound up having a thoracostomy. The surgeon said no RA Lung- Thank God. But the MTX made my immune system so low that I was never actually able to get rid of the pneumonia. I was in and out of the hospital- and wasnt able to work for 2 months. They did a CAT and multiple xrays- and I was on prednisone and inhalers all summer. Jill On Thu, Sep 4, 2008 at 9:05 AM, Marie Miley- <mrussell@...>wrote: > Is there anyone here with Rheumatoid lung disease? After having what has > been dx as bronchitis for three weeks and still unable to breathe well on > 10mg prednisone and inhaled corticosteroids, my rheumy has ordered a CAT > scan and xray to rule out Rheumatoid lung disease. (This is after treatment > with antibiotics, two breathing treatments, an 80mg depo medrol injection > followed by 20mgs of prednisone a day for four days and 10mgs for another 20 > days, and three different kinds of inhalers). > > There is a question as to whether or not I have pneumonia (I was on Enbrel) > as well, but I have not had any fever at all and very little in the way of a > productive cough. I have a dry cough once in a while, a lot of wheezing and > tightness, some pain in my lungs, and once in a while I am extremely short > of breath (nearly blacking out). Even on a number of different inhalers, I > am needing my rescue inhaler 2-3 times a day after nearly three weeks of > treatment. My primary thinks I just need to ride it out at this point, but > my rheumy says if I am not breathing well on 10mgs of prednisone something > is wrong. I have had asthma in the past, but it was very, very mild and > required the use of a rescue inhaler perhaps once or twice a year. > > Has anyone else had a similar experience? > > ~Marie > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Jill, How horrible. I hope you are much better now. Let's hope you have a better winter. Shirley --- In , " Jill Watkins " <jill.watkins@...> wrote: > > I have just gone thru an entire summer of pneumonia (3 times) and wound up > having a thoracostomy. The surgeon said no RA Lung- Thank God. But the MTX > made my immune system so low that I was never actually able to get rid of > the pneumonia. I was in and out of the hospital- and wasnt able to work for > 2 months. > > They did a CAT and multiple xrays- and I was on prednisone and inhalers all > summer. > > Jill Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2008 Report Share Posted September 9, 2008 Jill, I am so sorry to hear about your awful summer. Take care and I hope you are on the mend now, feeling better! Tammy> > From: jill.watkins@...> Date: Tue, 9 Sep 2008 15:15:14 -0500> Subject: Re: [ ] RA and lung problems> > I have just gone thru an entire summer of pneumonia (3 times) and wound up> having a thoracostomy. The surgeon said no RA Lung- Thank God. But the MTX> made my immune system so low that I was never actually able to get rid of> the pneumonia. I was in and out of the hospital- and wasnt able to work for> 2 months.> > They did a CAT and multiple xrays- and I was on prednisone and inhalers all> summer.> > Jill> > _________________________________________________________________ Stay up to date on your PC, the Web, and your mobile phone with Windows Live. http://clk.atdmt.com/MRT/go/msnnkwxp1020093185mrt/direct/01/ Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.