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764912 tn?1322711843

Interstitial lung disease.......lupus,sjogrens

Hopefully I can condense my story.  Their is a strong family history of auto immune diseases & death from early heart disease & blood clots. I have had a small stoke also.

For me about 20 years ago I developed elavated liver enzymes we could never determine if it was Lupus or another Auto immune disease.  The enzymes stayed elavated until 2007 when they changed and indicating issue with the biliary part of my liver.  We did rule out all other hepatitus so assumed it was auto immune.  A biopsy showed my liver to be ok.  

Since that time I have suffered with pain in joints, elavated kidney tests.  ANA is elavated on and off, anti-cardio lipon titers also off & on.  Also my CRP is elavated, and my ESR, but never could we get a dx of Lupus or any other auto-immune disease.  I thought of Sjogrens or Sarcoidosis ?

Recently in the fall, having suffered shortness of breath off and on.....it got worse.  The drs thought it was pneumonia but the xray was normal.  Anti biotics didn't help, a burst of prednisone did help me.  My heart rate is also 90-100 at rest and if I stand or walk 180.  My heart cath was good.  Still short of breath they had me see a pulmonologist.  He suggested it is related to auto-immune issues, and he can still hear the "rales"  He is testing for blood clots in my lungs, Vocal cord dysfunction & also Interstitial lung disease.
We discussed Sjogrens ...I also have Osteoarthritis in my spine.  I have lost 3 pregnancies because of blood clots in the placenta.  The dr have run tons of blood work.  My legs swell so large it  is embarrassing for others to see them.  Also at 6 I had a thymectomy but it did not show MG.

Would you have any ideas of anything more we can do. I am lost and so tired of the limitations.  Plus I fear they will never help me and I will just continue to have problems that damage my organs ect. besides the pain.  Any suggestions are appreciated!
I do take Hydroxychloroquine..which is helping the pain in my feet and hands.
Thanks
Tracy
6 Responses
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Avatar universal
Hi Rudyhorse.
I think this is the Antiphospolipid Syndrome. In fact i am 90 %positive this is.
I think you definately need to rule this out.

I dont know where you are from, but they have a centre of excellence for this condition in London.

You just need two simple bloodtests, which are the ACA, = Anticardiolipin Antibodies.
and, the LA = Lupus Anticoagulant. You only need to test positive on one of the bloodtests, be it LA, or ACA.

Due to miscarriages, this warrants further testing for Antiphospolipid Syndrome, which is actually an auto-immune disease, and can cause problems anywhere in the body.

I see you are taking Plaquenil, which will help but you need a proper diagnosis, so you can be monitored for any further damage. Also to get better,with the symptoms you are having.
I would also advice a lung scan for bloodclots, as you are having breathing problems, also you need a heart scan , to check the valves of the heart.

Good Luck
If you need anymore info on this, just give me a shout.
Nicola
Helpful - 0
764912 tn?1322711843
Thank you all ....it has been a long process....your comments have really helped me.!!
Yesterday the Rhuemtologist took tons of blood and I have more test coming up.  He doesn't think it is Lupus but does think it is something auto immune, he said even if we can't name it we have to treat the problems...so we will see.
Thanks so much....if anyone thinks of anything please let me know.  All of you hang in there too...
Tracy
Helpful - 0
434278 tn?1324706225
Hi there, just a few questions.  Did you mean RF (rheumatoid Arthristis) or RH?

I was thinking that a lip biopsy was pretty conclusive for a lupus dx.  I may be wrong though.  

That is very disturbing to me that every where I go I would have to go throught the whole dx process over and over.  
Helpful - 0
434278 tn?1324706225
Sorry to hear about you going though so many problems.  There are several things that can cause lung problems in lupus:
pleuritis
pneumonitis
chronic diffuse interstitial lung disease
pulmonary emboli
sarcoidosis

Interstitial lung disease: when inflammation in the lungs is chronic, it can cause scarring.  This scar tissue can provent oxygen from moving easily from your lungs into your blood and may cause interstitial lung disease.  The symptoms can include a chronic dry cough, chest pain, and difficulty breathing during physical activity.  I would have to look this up for more info.

Sarcoidosis: can affect the lungs as well as other organs causing granulomas to form in the affected organ.  The lungs are affected in most cases.  It causes a dry chronic cough too.  

I can't believe you are still waiting for a dx.  And then there are others who get a dx and then later have to prove the whole thing all over again.  The whole thing is very frustrating.  

Praying for you, Kara
Helpful - 0
Avatar universal
I have a positive RH.count,but no Rheumatoid arthritis. I do have Osteoarthritis in my neck, spine,fingers,knees,ankles and fingers. I also suffered Septic shock in 1985,lived through it but came out of it with Lupus. Treated on the East coast, moved to the west coast. Did a lip biopsy, and it came back positive. Now in Ms. they say I don't have lupus.I have sjogren"s,fibromyalgia,depression, high liver counts, high para thyriod counts, chronic anemia vit.D deficiency Renaud'sand positive skin biopsy's,along with alot of joint pain This started when I was 31 yrs.old and I'm now 52  ,    
Helpful - 0
Avatar universal
I have a positive RH.count,but no Rheumatoid arthritis. I do have Osteoarthritis in my neck, spine,fingers,knees,ankles and fingers. I also suffered Septic shock in 1985,lived through it but came out of it with Lupus. Treated on the East coast, moved to the west coast. Did a lip biopsy, and it came back positive. Now in Ms. they say I don't have lupus.I have sjogren"s,fibromyalgia,depression, high liver counts, high para thyriod counts, chronic anemia vit.D deficiency Renaud'sand positive skin biopsy's,along with alot of joint pain This started when I was 31 yrs.old and I'm now 52  ,    
Helpful - 0
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