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Medical Forum / Diseases and Disorders / Arthritis / March 2008Rmeum,,, lung update
my lung specialist has had a chance to compare 3 years ago to a fresh scan,,,, lots of lung lost it seems. I had a good reason to be running out of breath when doing something. It also seems that my RD will be treating me for whatever we can do to save the rest of my lungs. I called the Rd's office and got a newer appointment than the one I had. I do not know anything else I can do. Lost lung usage is gone. You do not get that back. Its hell to get old..... I have lost over 45 lbs. Most of that was muscle. You know the old saying,,,,, use it or loose it..... Shingles do not let a person use it without a great deal of pain. Will update at a later date about all this,,,, sort of down now. Harv ((((((((((((((((((Harv)))))))))))))))) I am so sorry that you are having to go through this pain. I am thinking about you and you will be in my prayers this weekend. What is your lung damage from?? I am sorry to ask but I can not remember. Would it be necessary to do a PET or MRI test ??? > my lung specialist has had a chance to compare 3 years ago to a fresh > scan,,,, lots of lung lost it seems. I had a good reason to be running [quoted text clipped - 8 lines] > > Harv > ((((((((((((((((((Harv)))))))))))))))) > I am so sorry that you are having to go through this pain. > I am thinking about you and you will be in my prayers this weekend. > What is your lung damage from?? I am sorry to ask but I can not remember. > Would it be necessary to do a PET or MRI test ??? My RD and I have to talk about this. It seems that there are three ways they can take a sample. Two of them might mean hospital time. Rheumatoid lung is what the specialist thinks and why my RD will be treating me for it. I gave the lung guy two MRIs and an old X ray and a new one. They are going to have to get a sample to find out anymore. Harv Ok then That does explain things.. sorry about the shingles thing.. I was hoping that it would be gone for your sake. Yeah.. I would be down too.. dang I wished you had better news and that you were feeling a bit better. >> ((((((((((((((((((Harv)))))))))))))))) >> I am so sorry that you are having to go through this pain. [quoted text clipped - 9 lines] > going to have to get a sample to find out anymore. > Harv hi harvey as someone who has been down this road [ 40% loss], i hope your dr is able to find the combination that will work for you - i've been stable [lung damage] for over 10 years now and have every intention of staying that way! [ #!*&! 'will' behave!] > > ((((((((((((((((((Harv)))))))))))))))) > > I am so sorry that you are having to go through this pain. [quoted text clipped - 8 lines] > going to have to get a sample to find out anymore. > Harv > hi harvey > > as someone who has been down this road [ 40% loss], i hope your dr is > able to find the combination that will work for you - i've been stable > [lung damage] for over 10 years now and have every intention of staying > that way! [ #!*&! 'will' behave!] Like I said, my RD and I are going to have to get together. My last visit with him, he mumbled something about big time steroids and I did not draw him out on it. Is that what they used for you, Paul? Harv steroids and hydroxychloroquine - this was before many of the newer [better] dmards available today at the time i was still on mtx and it wasn't doing the job so they switched things up - can't reverse the damage, but got the progression stopped. i'll take that! > > hi harvey > > [quoted text clipped - 7 lines] > him out on it. Is that what they used for you, Paul? > Harv > ((((((((((((((((((Harv)))))))))))))))) > I am so sorry that you are having to go through this pain. [quoted text clipped - 14 lines] > > > Harv I am sad to hear of your problems Harv and I hope the future outlook is brighter than you expect. The older we get, the more difficult it is to recover quickly. I have had gut trouble for the last month. I guess that the NSAIDs are catching up on me after 30 years. I have an appointment with a GI specialist next month, but am going away for a few weeks, so I can't see her before. Just to wish you all the best luck with your health. I haven't been posting for a while, but am around and read your posts whenever I can. Peter > I am sad to hear of your problems Harv and I hope the future outlook > is brighter than you expect. The older we get, the more difficult it [quoted text clipped - 6 lines] > > Peter Thanks Peter,,,, with food my friend, with food and a couple of hours before bedtime. Harv {{{{{{{{{{{ Harv }}}}}}}}}}}} Harv, sorry you are having to go through all of this! I know just how scary it can be, as I have struggled with rheumatoid lung/interstitial lung/pulmonary fibrosis since 2000. The most important and vital thing is that your RD and your pulmonologist work TOGETHER to help you from losing more lung function!!! They both play an important role in dealing with this all. There are certain meds that can help deal with the remaining lung function and to help control the RA's attack on the lungs. Two of the most common meds they use are prednisone and imuran. Both specialists will also need to watch carefully for any worsening signs such as dry cough with no pneumonia or anything, etc. you will also need to be hyperviligent in letting them know if you feel more short of breath, have a dry cough, or any time you feel like you are coming down with some lung thing! You can't just blow it off and say it will get better! Trust me, I did that and just made things worse! Keeping you in prayers my friend and hoping that your doctors will work closely together to get this better controlled for you!!! Hugs, . . . . Donna . . . . 1.) ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2.) J.K.M.A. Thanks Donna,,, I will try to get them to work together,,,, that's good advice. I am sorry to say that I have found that doctors offices often do not work together and/or share information well. It will be a challenge to make that happen for me and I will. Harv > {{{{{{{{{{{ Harv }}}}}}}}}}}} > [quoted text clipped - 35 lines] > > 2.) J.K.M.A. Harv, my thoughts and prayers are with you Harv and I sure hope you get some good news out of this all. You are due for some good news for a change. Take care and hang in there.  SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > Thanks Donna,,, I will try to get them to work together,,,, that's good > advice. I am sorry to say that I have found that doctors offices often do > not work together and/or share information well. It will be a challenge > to make that happen for me and I will. > Harv Thanks Jo,,,, I just hope that I have caught this in enough time where I can change how I do things and still do most of the things in my life. If not,,,, some things just will not be done by me. Harv > Harv, > [quoted text clipped - 7 lines] >> challenge to make that happen for me and I will. >> Harv Harv, I don't have RA lung, but I have COPD and asthma and I feel so much for you. I know it has been havoc on me so it has to be harder on you with the RA lung stuff. Plus dealing with the Shingles too, it is just too much for you to deal with at one time. I know how you feel about it will not be done by you. I know that hurts too. Just like today the boys and Jim are down at the hospital. But I couldn't go and I feel so terrible not being there to support them. This is his first parent he is losing and the boys first grandparent. So I hate this body really badly right now. But between having to do the nebulizer 4 times a day, eating 6 meals a day to try to get the hypoglycemia under control and trying to keep my bp up it is a terrible thing to deal with at a hospital for long hours so I can't do it. So my heart does go out to you big time. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > Thanks Jo,,,, I just hope that I have caught this in enough time where I > can change how I do things and still do most of the things in my life. > If not,,,, some things just will not be done by me. > Harv {{{{{{{Harv}}}}}}} DeeTee > ((((((((((((((((((Harv)))))))))))))))) > I am so sorry that you are having to go through this pain. [quoted text clipped - 14 lines] >> >> Harv Thinking of you, Harv. Hope things get brighter for you. SignatureNavy Take out the FISH to email me. > ((((((((((((((((((Harv)))))))))))))))) > I am so sorry that you are having to go through this pain. [quoted text clipped - 14 lines] >> >> Harv Harv, Just out of curiosity, did the tuberulosis stuff that you had to take meds for play into your lung stuff at all? This might be something to ask your lung doctor about next time you see him/her. . . . . Donna . . . . 1.) ANGELS EXIST, but some times, since they don't all have wings, we call them FRIENDS...... 2.) J.K.M.A. Hhhhhm, Good question....... I was treated for exposure to TB. I did not have an on going TB infection or condition. By the time I got that all straightened out, I had stopped singing in the choir and taking part in the greeting of new people at church. It is kind of funny in a way,,,, people treated me the same way when they found out I had shingles. They know you can not infect them with what you have but they do not want to take a chance. Changed my life,,,,, hurt too..... So it goes. Harv > Harv, > [quoted text clipped - 16 lines] > > 2.) J.K.M.A. > my lung specialist has had a chance to compare 3 years ago to a fresh > scan,,,, lots of lung lost it seems. I had a good reason to be running [quoted text clipped - 8 lines] > > Harv I'd be down right now too. So would most any sane person. I know you will let that go just so far and then get to work on, now what can I do with what I have. And how can I keep as much as possible. How is the Shingles coming. I know it doesn't seem to want to abide by any timetable. I sure hope your RD is able to come up with something good and effective. It would be nice if you could get at least some of that muscle back. Jo >> my lung specialist has had a chance to compare 3 years ago to a fresh >> scan,,,, lots of lung lost it seems. I had a good reason to be running [quoted text clipped - 12 lines] > will let that go just so far and then get to work on, now what can I do > with what I have. And how can I keep as much as possible. Exactly,,, right on the button. > How is the Shingles coming. I know it doesn't seem to want to abide by > any timetable. It is better than it was and my RD gave me some samples of 50mg Predabalin-brand name Lyrica Cv. and a prescription for Valtrex to keep if they ever come back. It seems that he had a bad dose of it himself a couple of years ago and him a coach of his sons little league team and a 3 month out practise. He must be super man. Welllll, he is my super man anyway. :-) He gave me a 3 month supply of that medicine which was turn about is fair play because I have given him two supplies of Enbrel for longer than that for people that just have no way to buy it. Under and down my left arm just will not go away. My chest and back still have red marks but are not near as sensitive, in other words, getting well. The Predabalin is for right now with my nerves to cut down on being so sensitive. Harv > I sure hope your RD is able to come up with something good and effective. > It would be nice if you could get at least some of that muscle back. > > Jo Harv, you're so right in that lost lung usage is surely gone for good. When I saw my cardiologist the day before he stopped his practice here, he asked when I would see my pulmonologist. I said well I had to cancel when I fell, broke my arm and hurt my hip and knee. He said "See him soon". That shook me because he was the one who found the lung problem and sent me to the pulmonologist in the first pace. So I have an appointment for Monday and am anxious to hear what he says now. Gwen >>> my lung specialist has had a chance to compare 3 years ago to a fresh >>> scan,,,, lots of lung lost it seems. I had a good reason to be running [quoted text clipped - 37 lines] >> >> Jo {{{{{Harv}}}}} I can understand why you are a bit "down". The news is not very good, as you indicated. Were you a smoker, or is it another type problem with your lungs? We're here to help "lift you up" again. Nanny > my lung specialist has had a chance to compare 3 years ago to a fresh > scan,,,, lots of lung lost it seems. I had a good reason to be running [quoted text clipped - 8 lines] > > Harv > {{{{{Harv}}}}} I can understand why you are a bit "down". The news is > not very good, as you indicated. Were you a smoker, or is it another type > problem with your lungs? We're here to help "lift you up" again. Nanny Hi Nanny,,,, I stopped smoking in 1983 but smoked for 30 years before that. The CT scan and MRI show the change in 3 yrs with my lungs. As I understand it, inflam.arth. and Methx. both can cause lung damage. When an RD listens to a persons lungs, they listen for a dry raspy sound which is what Methx does to a lung and then there is Rheumatoid lung where our immune system is attacking our lungs which is what the lung specialist thinks this is. It has been more than 5 years since I have taken Methx and that could not of caused the amount of change in my lungs shown by the two scans 3 years apart. We think we are doing pretty well but we do not know how much damage inflam.arth. is doing to our arteries, veins and/or lungs and organs. It well be after March 11 and my RD appointment before I find out more. Harv Ps If anyone has different information, thoughts, experience about anything above, please let me know your thoughts. ((((((((Harvey))))))))) I really hate that you are having such a rough go. Hard to keep upbeat with all of this going on. Know that we are all concerned and care for you. Prayers on the way. Lyn > my lung specialist has had a chance to compare 3 years ago to a fresh >scan,,,, lots of lung lost it seems. I had a good reason to be running out [quoted text clipped - 10 lines] > > >> my lung specialist has had a chance to compare 3 years ago to a fresh >> scan,,,, lots of lung lost it seems. I had a good reason to be running [quoted text clipped - 8 lines] >> >>Harv Hang in there big guy, hang in there. garyz ((((((((((((((((((((Harv))))))))))))))))) I am so sorry to hear this. It has to be incredibly disheartening for you. You have been through so much and have had to deal with so many different ailments the past few years, having this double back up and hit you on top of everything else....... well anyone would be really down about it. You and your docs are in my prayers. May they find the solution to keep some lung function for you for years to come. SignatureNann remove the Gator cheer to email me Simply the thing I am shall make me live --- William Shakespeare Yeah I agree Harv it is hell getting old. We all have lost so much and never will gain it back. I feel for you and hope you get some up days and soon. SignatureLove and Hugs to all Jo the squirrely one I am nuts about you. > my lung specialist has had a chance to compare 3 years ago to a fresh > scan,,,, lots of lung lost it seems. I had a good reason to be running [quoted text clipped - 8 lines] > > Harv
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