Author Topic: Lung Involvement due to Primary Sjs What Can be Done?  (Read 1580 times)

Daisy1234

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Lung Involvement due to Primary Sjs What Can be Done?
« on: March 17, 2011, 10:43:06 AM »
Hi I have severe Primary Sjs with many extraglandular complications.  I recently had a CT scan of my chest which showed that I have developed something called Bilateral Atelectasis.  This means my lungs will no longer fully expand on either side.  Several opacities in my lungs were also noted on the CT scan.  This is another new progression of Sjogrens disease for me and wasn't seen on my last lung CT scan which was taken about 9 months ago.

I'm turning to you kind folks for some help and insight as I was just told today that the cause of my Bilateral Atelectasis is a pulmonary manifestation of primary Sjogren syndrome.  My Sjs is quite severe and is attacking many parts of my body at the same time.  Sadly, this is just the latest development of many.

I am wondering if anyone else has been diagnosed with this condition and if so, what treatment did they receive?   I'm also wondering if I will eventually have to go on an o2 tank to help me breathe as my breathing has become a bit laboured now.  


Thanks,
Daisy



« Last Edit: March 17, 2011, 01:26:41 PM by Daisy1234 »

harlin

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #1 on: March 17, 2011, 11:11:02 AM »
Oh Daisy, I am so sorry you are having so much trouble. I guess as people say it is the gift that keeps on giving.

I am having trouble getting over a cold that I have had for 3 weeks and I went to see the GP doc to see if I could have Pneumonia, she said my lungs sounded clear but I was having trouble breathing some. She just told me to take some Clariton. It is not helping. Will wait till next week and call her back.

Hopefully you won't have to go on 02. Take care and get some rest.
blessings, harlin
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cremer

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #2 on: March 17, 2011, 11:36:17 AM »
When I was in hospital with my triple heart bypass, I needed O2 regulary, it's not nice for Sjogrens sufferers as it really dries out your airways, I struggled alot and was pleased when I was able to come off it.

Take care daisy and keep us informed.
Male 47 yrs old
PSjS (Positive SSa & SSb ANA 1:2560, Possible Fibromyalgia and CFS, Triple heart bypass Feb 2011, IBS, brain fog, joint pain, mouth and nose ulcers, paronychia, headaches, and fatigue, Very low WBC count.
Medications : Aspirin, Plaquenil, Bisoprolol, Simvastatin, Vit D, Iron.

ohiolady

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #3 on: March 17, 2011, 11:40:47 AM »
Daisy,

I am so sorry that you have, yet, one more thing to deal with and wish I had some good advice to give to you.  You are in my thoughts and prayers and I hope someone will come along and be able to offer some concrete help and advice.

Sending you a big hug.

Anna
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dbab

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #4 on: March 17, 2011, 01:06:08 PM »
I had some kind of Atelectasis that showed up on my MRI report however I don't remember what type it was.  I did ask the doctor about it and he said that it was PROBABLY from the position of laying down and my diaphram pushing on my lungs.  Doesn't seem like he was really sure but he wasn't scanning for my lungs anyway.  My rheumy wanted me to go see a pulmonologist because I had some SOB and cardio problems had been ruled out a few months ago so I probably will be doing that soon.  I'll let you know what I find out when I do.

Dolly Dimples

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #5 on: March 17, 2011, 01:24:35 PM »
Daisy, I too am sad to hear of this new problem.

                   I think maybe the Docs might try an inhaler before the machine, that is if indeed it comes to that.

                   I have the dry , dry symptoms and at the moment my ribcage feels fit to burst!

                                          and I am rather breathless on any exhertion. I have a review appointment 30th Mar, with my Doc,

                                           It has been a bad winter here (UK) for keeping  the air ways moist.

                                         My BP has been higher of late too, so I am keen to get to see the Doc.
                                         and will do so if I think I need to see him sooner..  Hope you get some better replies to your post. and take care,   Dolly

Daisy1234

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #6 on: March 17, 2011, 05:31:43 PM »
Thank you all for your kind messages of caring.  I am hoping that the viralent nature of this darn disease on my body will slow down soon.  I have an appointment with my dr in 3 weeks to follow up with this new lung issue.  I am expecting to be sent to a respirologist of pulmonologist afterwards.  In the meantime I am still waiting for the lymph node biopsy results that are checking for lymphoma.

Just wish that things were otherwise..... sigh

Daisy

Daisy1234

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #7 on: March 17, 2011, 07:04:42 PM »
Oh and yes Dolly, I forgot to mention that I was just put on an inhaler called Ventolin for the time being to see if that will help at all.  I think this is usually used for asthma breathing issues.  I don't have asthma btw.

Daisy

Pisces24

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #8 on: March 17, 2011, 08:08:21 PM »
I am not having breathing problems but I have spots on my lungs my pulmonologist is watching, He says this is due to Sjogrens. They get bigger, get smaller, come and go.  I had a bronschopy and nothing turned up with that. I never expected my SJS to manifest itself there!!!   He also said I have reduced lung capacity.

I sit at a computer all day and I am sure that doesn't help so I think if I exercise more I can at least help with the lung capacity.
I am hoping I don't develop any breathing problems or the next step is a lung biopsy. Ugh!

lindaneall

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #9 on: March 17, 2011, 08:22:36 PM »
Oh, Daisy. I am so sorry to hear this. I just wanted you to be aware of an excellent resource for help in case you wanted/needed to go somewhere for help with this. A few years ago I heard Dr. Richard Meehan speak at a Sjs conference. He is the co-director of the Autoimmune Lung Center at National Jewish Health in Denver, CO. He had an excellent presentation.  I remember thinking that if I ever had an issue with my lungs, than I would want to go there for help. I saw that he is scheduled to speak at the National Sjs Conference on April 2 (Lung Complications and Sjogren's).

Please keep us posted.


Spartan1

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #10 on: March 17, 2011, 08:29:42 PM »
Hi Daisy,

So sorry to hear about this new development. I have never heard of this. I have had a lot of bronchitis and I end up in the er almost yearly with asthma like reactions to an infection. I do not have asthma. I knew lungs could be involved. I will keep you in my prayers..I hope you start to feel better soon. How do they treat this condition? Why does the sjogren's meds not help?
Spartan1

susanep

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #11 on: March 17, 2011, 09:29:25 PM »
I am also sorry to hear what you are going through. Sjogren's seems ready to attack anywhere. I know when I lay down at night, and first put on my cpap, the rush of air shooting in feels so good to my lungs. My lungs open up more fully. I also need to see a pulminologist.

susanep  :)
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irish

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #12 on: March 17, 2011, 11:15:48 PM »
Daisy, I am sorry to hear that you are dealing with this lung stuff now. The one question I have is if the doctors have put you on a DMARD or if they have added another DMARD or changed your DMARD???

Many times it helps to change drugs or add one of the stronger ones so that you get a stronger attack on the autoimmune attack on your body. One shouldn't just sit and watch this happen. Something needs to be changed. I would hope that your prednisone has been increased. Many times methotrexate is changed to something like Imuran or Cellcept. Sometimes cytoxan is even used if the others aren't working well enough.

I would hope that you are able to talk with your docs about the treatment you are receiving. Did they treat your atelectasis with some antibiotic??? I had some in the upper parts of my lung about 5 years ago and they gave me 10 days of antibiotic to help get rid of the infection that often goes with it.

Have they done a sputum culture for acid fast bacteria to check for unusual infections in your lungs. These can often precipitate the atelectasis also. Also, ask for a nebulizer with albuterol and 2 ampules of normal saline to add to the albuterol. My pulmonary ordered this because I asked for it. The albuterol is to help open up the bronchials tubes so that the mucus can move better.

Our mucus is so thick that after a couple weeks of just the albuterol I asked for the normal saline to add to the albuterol. That really made a difference. It helps to moisten the airways as they are being expanded. This helps to thin the mucus enough that is moves better when we cough. Be sure to keep active physically in some way as this helps to expand the airways and keep the mucus moving also.

If we sit around all the time the mucus just sits and stagnates in our lungs and infection sets in more often. I have a Vest which is called a "Airway Clearance Device". Google this phrase and see what you find. This Vest was invented by the U of MN to treat Cystic Fibrosis patients. The vest pounds the chest and rattles it enough to help move the mucus. I do it twice a day or more at the same time I do my vest. It is really strange. Having mucus that is thick and having sjogrens means there isn't all that much mucus.

However, if I miss my vest even one time a day I can tell the difference. My lungs start to feel like they are filling up and I can't breathe as well. These Vests are expensive and mine was paid for by medicare and my secondary insurance. I am forever grateful to the pulmonay PA who advocated by mail with medicarae to get this vest for me. The main reason I got it is because I have myasthenia gravis and low t-cells which makes me at high risk for infection due to weakened muscles and weak immune system.

It might be worth a fight with your insurance company if you are having increased lung issues. Do not hesitate to fight for the opportunity to get help from some of these other medical treatments.

By the way, the albuterol is 3 cc's in an ampule and the sterile normal saline is also 3 cc's per each ampule. Irish  ;D

Daisy1234

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Re: Lung Involvement due to Primary Sjs What Can be Done?
« Reply #13 on: March 18, 2011, 09:55:42 AM »
Thank you everyone for your kind replies.  I was saddened to hear that many others are also dealing with Sjs related lung issues.  Hugs to all of you and my thanks for your taking the time to reply to my post.  I have however as of yesterday made another appt with my PCP to see if I can get something going to help and you've all given me some good tips of what to push for.

Irish, as always you posted some very concrete advice about what steps I should take from here.  Right now I am on prednisone, but I have not yet seen a pulmonologist and it will be probably a few months before I can get in.  I am currently waiting for a call to tell me when my new appt will be.  I live in Canada and although the medical system is mostly paid for, it is slow going to get in to see "ologists".  No one has prescribed me any anti-biotics so I will bring that up with my PCP right away.  I will also look up the "airway clearance device" you mentioned. 

The last few days, I have felt alot of pressure in my chest, with a dry cough and breathing is sometimes laboured now.  So this issue seems to be progressing. 

Once again though, a big thank you to all of you.  Your replies have helped alot.   :)

Daisy