Abnormal pulmonary CT

[Kathy57]

Dear fellow Sjogies,

Well I had my Pulmonary CT scan and I now get to see a pulmonologist on Feb 29th.
The CT showed multiple scattered pulmonary nodules and ground glass nodules?  Some of them measuring 11 and 9mm.  Evidently, you don't want any larger than 6mm?

So this is all new to me.  I got a call from the office nurse telling me the results and that a referral was made to pulmonology.  Pulmonology called a day later and now I will be seen on the 29th. 

Meanwhile I'm still coughing up junk and feel terribly fatigued and out of breath on exertion.  Right now I'm on an antibiotic and Breo. 

Okay so I'm nervous.  I don't know what to think.  I'm tired of feeling so low energy.  I'm taking care of my husband who has stage 4 cancer.  I don't have time to be unwell.

I see my new Rheumatologist this Monday for the second time.  I met her NP, earlier this month, who I really liked, and who spent far more time with me than she did!  I spent maybe five minutes with the new Rheumatologist, and I felt kind of upset when I left.  She was flippant and not happy with my previous dose of hydroxychloroquine!  I got the impression she didn't think much of my previous Rheum and she questioned my diagnosis!  I felt like she kind of dismissed me.  She did a lot of lab work and I've never tested positive for the SSA or SSB so I think that was all she was looking at. 

My lab work came back and I was able to peek at them through my patient portal.  Two of them were elevated but I don't know what it means.  I had a mildly elevated RF and anti chromatin antibody.  Negative ANA.  My white count was elevated but everything else appeared normal.  I see her this Monday to go over my lab results and get my Prolia shot for Osteoporosis.

How can I feel so lousy and my lab work be so good?  I just didn't like her attitude. 

I think my lung issues are due to Sjogrens but she said I'd have positive Sjogrens lab work if that was so!!!! 

I don't know what is wrong with my lungs but something is wrong and it's not going away.  I can't imagine having cancer!  Wouldn't that be the cherry on top!!! 

She did say she would continue my Evoxac, and Hydroxychloroquine, but questioned why I was on it!!!  Wanted to know why I didn't get a lip biopsy?  My previous Rheum told me I didn't need to get one for him.  I told her I will gladly get one if she wants.  I feel like it's gonna be a fight for treatment and I'm tired. 

Thoughts?  I know I'm not alone.  I hope our visit this Monday will be more positive.  I've been told that my Pulmonologist has rave reviews and is very good.  I'm glad for that.

Thanks for letting me share my worries in writing. I feel better writing it all down.    At least I know that YOU all believe me.

Kathy

[araminta]

Hi Kathy, so sorry to hear about your latest concerns, and a lot of what you say resonates with me.   I have all the usual Sjogrens symptoms but my blood work never showed anything.

It's not pleasant to have a consultant who seems flippant about your health, it doesn't make for a very trusting relationship.   Is there someone else you can see instead of that one?   In my personal experience in other health areas, the NPs have been more impressive than the consultants, more attuned to their patients.    However it's encouraging that your pulmonologist has good reviews.

After doing a quick search about lung nodules, I get the impression they are very commonly found when someone has an x-ray or CT scan.   They are benign more often than not.   Sometimes they just go away of their own accord.   Often they are simply monitored to check for any possible changes.

I hope you soon get some clarity about what is going on.   I hope the appointment at the end of the month is helpful, and that you can have some confidence in the pulmonologist.  Posting here is always a good way to get stresses and upsets out of our heads and into the open.   Do let us know how you get on.

[Kathy57]

Thank you, Araminta.

 I appreciate your advice.  I'm going to give this New Rheum a second chance.  I'll see her this Monday.
Kathy

[meirish]

I'm so sorry that you are having all these issues. You are right...you don't have time for this but here it is!!!

Glad that you had the lung CT and going to pulmonologist. This visit may help you with your overall diagnosis. You don't need t o have positive tests to have autoimmune disease but some of these rheumies don't get that. Some doctors have to have everything spelled out for them. You may need to get a lip biopsy but if it is negatie you will not have gained anything so it is a quandry that is for sure.

First thing is to get the lung issues taken care of as that can be making you feel sicker than a dog I would think!!! Make sure to ask pulmonary about fungal lung infections as there seems to be a lot of talk about these lately. I did have Mycobacterium kansasii years ago which is a non contagious form of TB and I needed 8 pills a day for 1 year. I had lesions in lungs, liver and spleen and was diagnosed by accident.  You can get this from soil/water etc. More common in people with issues affecting ability to fight off infections. I turned out to have severely low T-cells which were diagnosed after the one year treatment. I got an autoiommune specialist who finally was able to figure out what was wrong with me besides Sjogrens and Bullous Pemphigoid a skin autoimmune disease.

People with autoimmmune diseases can have so many issues that just plain confuse doctors and make for difficult diagnosis. You know that for sure. Hang in there and be thankful for every new doctor you get. Some can not help but odds are that a good doctor shows up now and than and can help. I hope you can take care of yourself some but know that you are struggling with a lot on your plate. Keep us informed on how things are going with you. Take care. Hugs. meirish

[Kathy57]

Irish,

Thanks always for your wisdom and advice.  I saw my new rheumatologist for a second time and I feel sooooooo much better about her.  She really spent time and listened to me this time around.

I see her again on May 20th and she is thinking about adding one of two DMARDS to my meds, but she wants me to get a lip biopsy and to see what pulmonary says.  She agrees that I have lung involvement.

So I'm scheduled next month at the university of Iowa for a lip biopsy.  I saw the pulmonologist and she has put me on Breztri.  I feel much better and am coughing much less.   She wants to repeat my CT scan in 6 months to compare, and she wants it at the same place I got my last one, so they can better compare.  She doesn't think I have cancer because she said I would have one or two nodules then, but I have so many and they are scattered. 

So I'm just so glad to breathe better and I think I see light at the end of the tunnel.

My husband is doing pretty good on new meds.  (Thank God). We go back to MD Anderson in Houston in June to do follow up tests for him.

Babysitting my sweet grand daughter today.  She is two and so sweet! 

Thanks again,

Kathy

[TTSandy]

So glad to hear that things are looking better on all fronts. Have been praying for you and another friend who has been dealing with much the same.  Will continue praying that with new meds and physicians who are willing to listen and follow up things will improve.

Sandy

[araminta]

Very pleased to hear  your latest news, I had been wondering how you were getting on.   I hope the lip biopsy shows some helpful details.   Do keep us posted.