[melrose]

:rotfl:It has been a long time since I have posted here. Dxed with Lupus in 1995. Very sick for a couple years. No organ involvement until 9-07. Pulmonary doctor performed all the necessary tests concerning my shortness of breath. Scans, PFT, chest x-ray, oxygen levels in blood etc. Ends up telling me it is pulmonary fibrosis, nearly the same as interstitial lung disease. One great consollation was it was not pulmonary hypertension! Thank God. The prognosis of that is worse than with the fibrosis. Can someone shed some light on this terrible condition? Does anyone have experience with this? I need encouragement big time. I knew my breath was getting shorter on exertion for about a year and a half before I went for tests. She started me on 10mgs of prednisone immediately in 9-07. Cut it back to 7.5 a couple months ago. Was already on 2.5 since about 2003 for low platelets. Of course that was helping keep the joints in control. No joint problem now for sure. Taking 400mgs plaquenil also for years. I wonder if we need to be more AGGRESIVE with this lung problem. I have been trying to bury my head in the sand about this and I believe the shortness of breath may be getting worse quick. She says the lower 2 lobes are already scarred. I need to ask her to show me the scans and give me a better idea of how far gone the lungs are. Once the scars are there, too bad for me. I guess I am dealing with fear and I have not shared it much with my family. My 21 year old daughter has been to all my 3 month appts with me since Sept at the pulmonary specialist. Maybe she is having fear also and doesn't want to talk about it. Maybe the doctor hasn't expressed the prognosis too boldly to us. I just need some input from you good people that know about this. I have faced death 3 other times with all my diseases and syndroms but my good Lord and Savior Jesus has decided to spare me those times. I live alone. Have another daughter 27 years old and 2 beautiful grandsons, 8 and 5. Sorry this is so long. Maybe I need immune suppresive treatment? I probably do need all the major blood work up to see the complement levels to show the inflammatory process at this time? I only have medicare and I feel they don't go all the way when I don't have any other insurance to help out????? Thanks for all your input. Mel I have always been very positive about all this mess for years but seem to be letting this all bog me down to a degree. Help!!!:wink2:

 

[Katharine]

Hi Melrose,

It is incredibly scary when your breathing gets gradually worse. I have had slight breathing problems for years and recently, when the rheumy reduced my pred dose, they got very bad and I couldn't breathe even at rest. The docs suspected ILD but, for the moment, it seems there is no scarring so they are leaning more towards weak pulmonary muscles due to polymyositis involvement (overlap). I am now OKish so long as I don't decide to do anything even remotely physical. I still get mild "attacks" if I'm tired or there's a lack of air for whatever reason. My chest hurts constantly. Only time will tell us really which theory was right.

The lung specialist I see said that the best treatment is, unfortunately pred he is the first doc I've met who was delighted I was on it and that the dose had been increased due to those problems.

Immunosuppressants can be helpful too and I'd say that if the rest of your disease is not fully under control then that would be a very good question to be asking. There is a specific immunosuppressant which for some reason has been shown to be beneficial to myostis sufferers with ILD (Tacrolimus) but, as I say, that was for myositis sufferers. I don't know if it is useful for lupus patients too.

Whatever happens, treatment is very important so as to prevent the disease going any further. Normally, once tissue is scarred it doesn't repair easily (though my Mum did have that chance). If you are not happy with the follow up you are getting, I would seek a second opinion as it is a very serious matter.

sorry I can't help more. I'm still on a learning curve on this one
Katharine

 

[Joandublin]

Hi Melrose

Im sorry to hear about your lung problems :worried: I think Katharine has given you some good advice and from what you have written it is time to have a good conversation with your specialist.

I dont have any direct experience of ILD but keep checking your post as there are members here who have experience and they may be along to share their knowledge.

You need to get more information on how far your lung condition has progressed and also to get a picture of how your Lupus activity is at the moment. Treatment for ILD is dependent on the type of disease and how much inflammation is present and certainly in some cases cyclophosphamide is used along with prednisone. There are other therapy options to consider as well which are aimed at supporting lung function (like oxygen) but this would be dependent on how far advanced the condition is. Each case is different and its important to find out exactly what is the best treatment right now for you.

I can only imagine the worry you must be going through with all of this. Best of luck with talking to your specialist.

Take good care
Joan:rose:

Im

 

[Joandublin]

Hi again Melrose

I forgot to say make sure you get your annual flu and pneumonia vaccines as they are recommended for people with ILD to help prevent infections.

Cheers
Joan:rose:

 

[Jirel]

Melrose, I'm sorry I don't have any personal experience with this disease, but I did find a yahoo group that is a support group that as I understand it is made up OF people with the pulmonary fibrosis. If you are interested, here is the address:

http://health.groups.yahoo.com/group/Breathe-Support/

 

[MichelleAnn]

:hugbetter: I too suffer from extreme shortness of breath at times. I have told my rheumy doctor and my general doctor and they feel it is just muscle weakness. Ive never been tested for anything else but I do get scared and panicked when I cant breathe and the heaviness on my chest. I do not wheeze like with asthma but I cant seem to get enough air into my lungs. I feel like Im suffocating. Ive tried my daughters asthma inhalers and they do not seem to make much diffference. Im so sorry you are going through this. I can imagine your fears. I dont have many words of wisdom....except I am thinking of you and care!! I would get another opinion if possible on treatment and do some research on the internet. I know insurance is a big problem. Hugssss to you!!