CVID and COPD, getting worse

[Carolina]

Dear Sjogrens Friends:

Does anyone else have COPD?  If so, how are you treating it?

My COPD is getting worse.  I now have wheezing, most noticeably at night.  I have CVID, which is highly associated with my form of COPD, Small Airway Obstruction

My Immune System is not only deficient, it also attacks the organs and systems of my entire body.  My immune system seems has been rampaging for the past month, causing myalgia (body pain), brain fog, raised temperature, fatigue, depression, all the fun there is.

This so sucks.

Some background info;

I've had IVIG every four weeks since diagnosis with CVID in  2013.

Recently my Immunologist increased the IgG in my infusions from 35gm to 50gm, because my IgG started declining.

I was also diagnosed with Small Airway Obstruction (which occurs in about 25% of patients diagnosed with CVID) about 2-3 years ago.  Small Airway Obstruction is a form of Chronic Obstructive Pulmonary Disease (COPD).

My Immune system has attacked and damaged the nerves in my legs (Peripheral Neuropathy) and 2 of three major nerves are 'dead' (unresponsive on testing) and the 3rd is severely damaged. My legs are atrophying terribly.

I have Small Fiber Neuropathy in my skin, which makes me feel as if my skin is on fire.  I take 3600 mg Gabapentin daily to control the burning, stabbing pain.

My bladder is damaged (Interstitial Cystitis). As a result, I have uro bacteremia, which means that the bacteria (e-coli, for example)  causing UTIs are always in my bladder.  Antibiotics don't make the bacteria go away!

My gastrointestinal system is damaged, both esophagus and small intestine.

My moisture producing system is severely damaged, affecting my eyes, mouth, vagina and rectum.

I have Polymyalgia Rheumatica, which is very painful and treated with methylprednisolone.  I've been treating PMR for almost 3 years, and trying to withdraw from the steroids (which have damaged my skin terribly).

When my Immune System is actively attacking me some or all of my problems get worse, and new ones develop.

I am exhausted now.  Must walk with a walker and wear braces.  I just got a power chair, which I use when I have to walk very far.

I wish I had some good news.  I'm basically an optimistic person, but right now I'm feeling overwhelmed.  I worry that I'll end up on oxygen, just another thing to deal with.

Love, elained

[SjoDry]

Elaine,

I don't have COPD, but am in the process of docs trying to diagnose my current pulmonary condition. My pcp thinks I have Scleroderma. My lung (I had 2/3 of r lung removed at 14)..is now greatly involved. I had a vasovagal syncope event in July. Just had pfts that are irregular. My cardiologist says he thinks it may be the beginning of pulmonary hypertension. I have a desaturation test on Nov. 4 to see if I need oxygen. My oxygen is dropping when I walk.

I am constantly short of breath, coughing with chest pain. I feel like I am reliving my childhood. It just never seems to end.

On the plus side, I have now established some great docs.
I hope you (and I both) can avoid the oxygen for awhile.

SjoDry

[meirish]

Both of you gals deserve a metal for perseverance as you just keep on keeping on.

Elaine, I am so sorry to hear that you are being so overwhelmed with all these ailments. There is nothing about autoimmune disease that is fair to any of its victims. So hard to keep up spirits and to keep trying to live a somewhat normal life. Some of us become high maintenance patients and we are always thankful for the good doctors that keep on trying to keep us comfortable.

So glad that your doctors are working with you. Just the fact that you sent this post shows that you still have some spirit in you. I am glad that you are in such a good living facility that helps you with these issues. Please get the rest you need and I hope that you have some decent pain control so that you can sleep at night. Know you are in my thoughts and prayers. Hugs meirish

[meirish]

SjoDry, Like I said above, both you and Elaine seem to keep on going in spite of it all.

Sorry that you keep on having all these issues and hope they can figure out the possibility of pulmonary hypertension and get some help for your issues. Then possibility of scleroderma is something that certainly needs to be evaluated. As with most AID the testing can often be ongoing and difficult to identify.

I'm sure you have days when you wonder if you were born with the propensity for all these issues that have escalated through the years. You had a lung resection at a young age that is for sure. And yes, avoiding the oxygen is always on any of our minds when the lungs start acting up. The good thing is the portable oxygen is so much better these last few years.

Please keep us updated on what you find out with the pulmonary hypertension and the scleroderma. Do they think these are related or separate problems?? Hugs to you also and much thought and prayers also for you comfort and diagnoses. meirish

[Judie P]

I have been diagnosed with COPD.  But they can't figure out how I got it.  My regular doctor investigated this years ago and found that Primary Sjogren's can cause COPD.  That is the only thing they can think of.  Never smoked, never around smoke, etc. But this is an intuitive hit that I came up with...

When I get a lot of bloating (gas) in my stomach, I feel like I cannot breath.  I have lots of that on the day of my tests.  I can take COPD medication, and it doesn't do a thing.  Wen you have a lot of gas built up in your stomach, it affects your diaphragm making it feel like you cannot breath.  Otherwise, I am usually fine.

[meirish]

I had done research years ago about Sjogrens and lungs. Doctors were not good about checking lungs back then as they were not as aware that Sjogrens affected the lungs. I was lucky about 15 years ago to find a pulmonologist who knew about autoimmune diseases and their ability to affect the lungs.

I have been seen a couple of times a year or so since then and have breathing tests every time to keep up with my lungs capabilities. I think that being on albuterol and steroid inhalers since 1981 for my asthma has probably helped my lungs plus being on IVIG infusions could have helped also.

I keep thinking that I have read that Sjogrens patients are also high risk for pulmonary fibrosis so need to have a pulmonary doc to help monitor the lungs. Might be interesting to ask your pulmonary doc if there are other issues that go along with the sjogrens that could lead to the COPD. My husband had Celiac disease and I had found articles that referred to lung involvement from pulmonary issues with that AID. From my research I have been under the impression that many or most autoimmune diseases can also involve the lungs. If so, doctors don't seem to be concerned about it.

Hoping that you can find more info on this and also some help. Keep us posted if possible as anything you find out could help others on this site. Have you done a search for COPD on this site. There could be posts from 10-15 years ago referring to this issue. Good luck. meirish

[Deb 27]

Hi Elaine,

Sorry to hear about the COPD. Did they give you an inhaler yet to help that?? Sometimes these auto immune diseases affect us from head to toe. I am sorry that this is happening to you. You have always inspired everyone here with your posts. I admire your spirit and perseverance.

[MarieB]

Elaine, I'm so sorry to hear this.  Sending love and hugs.  Marie 

[Carolina]

I saw my Immunologist in October.  She's the one who monitors my respiratory issues.

I am not getting worse, COPD wise, and my doctor is pretty sure that I won't wind up on oxygen because I don't have any inflammation in my lungs.

So that is GOOD news all around.

I don't even need an inhaler.

I'm in a pretty good place right now.  My worst pain is from my knees which I can't have replaced because of my profound peripheral neuropathy. 

I do exercise most days for over an hour on the NUSTEP machine, which allows me to get in 5000-10000 steps.   

Cheers,  Elaine

[meirish]

Elaine, Good grief girl, you are sure in better shape than I am. All the illnesses I had this year along with my almost constant anemia has made a weak willie out of me. I keep hoping that there is a better day coming.lol  But I won't hold my breath.   I walk the halls where I live. Walk the halls on 3 floors and I counted steps and its just under 1/3 mile. On the days I can walk it. But we sjogies can't give up cause it is in our DNA. Take care. meirish

[Carolina]

Oh dear Irish:

I know you have many many health issues....and anemia is making everything worse, I'm sure.  When I was anemic I could barely move.  Taking iron tablets twice daily solved my problem (I know I was lucky on that count!).  After about 10 years my iron level suddenly increased dramatically and I was able to stop the iron tablets.  My anemia was no 'cause' and so was 'idiopathic'.


I think those of us with Immune Mediated health conditions have so many problems, and sometimes they come and go for no apparent reason.  Mostly they just stick around and attract other conditions, as well.

So GLAD we have each other here!

Elaine