Has anyone heard of Shrinking Lung Syndrome?
Supposed to be working but my head is full of cotton wool so I thought I would do a little Lupus research instead.
I went to see a new Rheumie last week. In the UK we get free health care which is great and I dont know how I would cope with the worry of how to afford to see a Dr! The only downside is you dont get to have any choice who you see and when you see them so I have seen a different one everytime since being diagnosed in Feb 06.
The one I saw last week reminded a lot of "House" a Dr on TV. V clever I am sure but with no patient manner at all. The last set of bloods are looking really good but I am really struggling with breathlessness.
Since september last year I have had pluresy and never got rid of it. I have aslo had Mycoplasma pnuemonia, Pericarditus and pnuemonitus all at different times. The Rheumie decided I had another chest infection so has given me some more antibiotics but then mentioned something called shrinking lung syndrome. He has sent me for some more tests, chest x-ray, heart Echo, lung function etc but I wanted to find out a little more about it so looked on the internet but I cant find anything.
So now to the questions...
1. Will the pluresy ever go away?
2. Does anyone know anything about Shrinking Lung Syndrome?
Sorry this is so rambling but as I said suffering from major brain fog today! Should stop partying and get more sleep!
Shrinking lung syndrome affects a small proportion of patients with lupus and may also occur in children. It is generally due to the scarring of the lungs due to long standing inflammation decreases the lungs' capacity to take in air. It seems that the lungs can no longer hold normal amounts of air. The main symptom is shortness of breath with exertion but the patients are otherwise clinically well. The chest X-ray does not show any shadow, but the amount of lung available for gas exchange is markedly reduced. The diaphragm, which inflates the lung, also appears not to be working normally in such cases. This tends to be a chronic, low grade problem and treatment is with steroids, but it is not always effective.
Pleurisy is the most common pulmonary (lung) manifestation in Lupus. The pleura is a membrane that covers the outside of the lung and the inside of the chest cavity. It produces a small amount of fluid to lubricate the space between the lung and the chest wall. As lupus activity generates immune complexes, they initiate an inflammatory response at this membrane, a condition called pleuritis.
Pleurisy is usually treated with these medications:
non-steroidal anti-inflammatory drugs (NSAIDs)
However, Pleurisy also may clear by itself with time. It can recur, but generally is releived with medication!
Peace and Blessings
Thank you so much for that Saysusie. You really have put my mind at ease. Where do you find out all this information?
Thanks for all the hard work you put into this site. As many others have said it is a real lifeline.
God Bless ya!
Hey! I'm curious for an answer from Saysusie too! Do you work for AskJeeves.com or what? You are like a walking medical encyclopedia and I am wondering if you would so graciously tag along at my next doc appointment? LOL!! Sunshine 101
I would love to go with you to your doctor's appointment if I could! Actually, I think that we all should have an advocate with us when we visit some of these uninformed, insensitive doctors! But, the best that we can do is to educate ourselves and take our information with us as our advocates.
To answer your question and KTJ's questions :lol:
I do not work for "AskJeeves"..but are they hiring?? I could use some extra cash! (lol). Anyway....part of my devotion to this site is to spend hours and hours and hours researching answers to all of your questions. I am relentless about that and will not give up until I find an answer (because I know that there is an answer out there, somewhere). So, my expertise is actually in the area of research. I do retain a lot of information because many questions are asked more than once, but I am just good at research. That is the only gift that I have to share and so I share it diligently!
Thank you both so much for the compliments and the appreciation.
It means so very much to me!
Peace and Blessings
What would we do without you and your gift of research? You were given a gift that benefits so many - and what a great blessing that is! How great it is that you know your gift - I'm still looking (smile). We are so thankful for ALL you do to keep this wonderful site going. I've been sharing with as many people as I can about this site.
You are truly extraordinary.
Keep on smilin'
Life is good - love is better
Thank You Browneyedgirl :lol:
This site is truly a very large part of me and, although I do not express it to many, it defines who I am and what I feel is important: Being here with all of you and doing all and everything that I can to help in any way that I can!
Hi All, I have been battling pleursy, pericarditis with and without effusion, since April 05. Numerous trips to ER for chest pains...... Have been trying to lower my predinsone, and each time, the chest pain comes back, about 7 times in this time period. I have searched on the net about recurrent pericarditis and found that it can become steroid dependant, and research has found that sometimes the medication Colchicine can help with the inflamation enough for the patient to get lower, or even off of prednisone. Great! I have been on Colchicine for 2 months now, and just lowered my dose again today to 12.5mg pred.- I am feeling very good, no return of chest pains, so far...... I will continue to lower the dose until I get to 10mg, then I will lower by 1mg every 2-3 weeks. (I also take Methotrexate 10mg weekly)
My question is, what other medications do you take?
Good luck to you, hope you find something to help.
Sorry you have had such a rough time Kimb. I get v frustrated at having to go to hospital all the time. I want a life and I dont want to be a pin cushion! Especially the Blood Gases test they do in my wrist! :?
But at least they always take it seriously (Often they are a lot more worried than I am, I have been living with these symptoms for over 10 years, I thought they were normal until people told me they werent and I ended up in intesive care!)
I currently take...
And I am about to start on Fosamax
Last three sets of bloods have now been normal so I am reducing Pred a bit more again hope to be down 5mg by the new year if all goes ok.
Go for a Heart Echo and Lung Function tests tomorrow to see how it is all going.
Take Care Everyone
Keep us posted KTJ.... :lol: