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Sjogrens Symptoms-Shortness of Breath

Posted , 14 users are following.

millie1202
millie1202

Hi. I tested positive not too long ago for Sjogrens. I had a very low score (1.8- Ssb).However, my symptoms dont seem mild. Has anyone experienced shortness of breath? I have the dry eyes and mouth, along with Fatigue, numbness, but I dont see much shortness of breath from other ppl who write about this. Anybody experience this? What about after having started Plaquenil? I started about a week ago. This is all new to me and Im trying to figure things out. Im going to ask my rheumy but wanted to hear from other ppl that have this condition. Thanks.

0 likes, 37 replies

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  • Kristy823
    Kristy823 millie1202

    Posted

    Hi. I was diagnosed a year ago with primary SS and have been on the plaquenil for the past 6 months and not able to tolerate 400 am now doing ok at 200. Hard on the stomach and GI tract but already improvement in the eyes. I can now go into places with ceiling fans and be outdoors with wrap around sunglasses. The SOB just started and I had an x ray which did not show pneumonia which was what we were ruling out but still anxious. I see my FD next week and will ask for a more comprehensive screen. good to see posts from others living with SS.
    • aitarg35939
      aitarg35939 Kristy823

      Posted

      Hi Kristy

      Welcome to our little non-club "club".

      I've had SS many years but am only just now contemplating plaquenil so that was some good info for me and I appreciate you sharing it.

      Aitarg

    • carol09887
      carol09887 Kristy823

      Posted

      Hi Kristy, how are you? Been awhile since i looked on here xxx hope you are copingxx😊

    • Kristy823
      Kristy823 aitarg35939

      Posted

      Thank you for your warm welcome. I don't follow my email every day so it takes me a while to check in. I hope the member having trouble breathing is better. I have that from time to time. Most recently I have had pain in my left side and indigestion. My PCP says "virus" and sadly it is not better so I am going back next week. Trying not to think too far ahead. I stopped all my NSAIDS and the plaquenil and went to a bland diet so I am a little better but still going back. I wish you all well. I am hoping things will resolve and I can take my plaquenil. It was really helping my eyes. Best wishes to you all and expecially would like to know how the lady with breathing trouble is doing.

       

  • carol09887
    carol09887 millie1202

    Posted

    Hi millie how are you these days? My shortness of breath is improved to what it was so wondered how you are managing. Im not on some of the treatment plaquenil as you and otber are. Just using eye drops stystane and clinitas. Hourly suposed to but eyes feel better so go on for two hours. If in the same envireoment. All the best to you xxx Easter here already 😊??

  • tracy79802
    tracy79802 millie1202

    Posted

    Hi Millie. I was diagnosed with primary sjogrens about two years ago and it's scay because not much is known about it. In fact, I use this forum to get a lot of information that is unknownn by most dr's. Also, I live in Oregon, US, and there is a shortage of rheumatologists which makes it difficult to get answers because I'm often told that my symptoms aren't a result of Sjogrens -- when I know it's a contributing factor. They often refer me to my primary who doesn't know much about Sjogrens so I'm working with him to narrow down the issues I'm experiencing by seeing different specialists. I went from never getting sick to getting bronchial issues every 2-3 months. 

    Having said that I experience shortness of breath too and I don't know why but I'm concerned because it has become a common theme. I recently had a chest x-ray done and am waiting for the results. After reading the comments from others it sounds like a good next step is to see a lung specialist. I will take their advice and hope you do too.

    Some of the other comments also mentioned working out as a good way to help and ironically it is. It's difficult to work out when you have shortness of breath but it does help. 

    I'm sorry I don't have more information on the topic but will share what I learn about shortness of breath and other similar issues as I learn more with the hope that it helps others.

    Hang in there and thank you for raising the question. It helps all of us. 

    Tracy.

    • rosanna55577
      rosanna55577 tracy79802

      Posted

      I had my Rheumatologist appt. , didn't turn out good. He tried to tell me that Sjogrens does not cause lung problems, he said I don't have any inflammation according to my blood work. He is saying last time my Sjogrens was getting alot worse, and needing to watch it closer, now he saying it's just the dryness, so I don't know what he thinks he needs to watch. I am getting me a new Rheumatologist. First I'm going to find me a Pulmonary Dr. For my shortness of breath, hopefully they will do a MRI.

    • Megheart
      Megheart rosanna55577

      Posted

      Hello Rosanna,

      Sorry that you didn't have a very good appointment with your Rheumatologist.

      Regarding the association between SS and pulmonary involvement there are many peer reviewed articles available which indicate otherwise. For instance here is just one: 

      if you enter into a google or safari searchline something like "association of pulmonary involvement in Sjögren's Syndrome" you will see a good number of articles come up. 

      Also just a comment about your hope for an MRI. I'm not sure about the merits of MRI for lung scanning but I do know that HRCT (High Resonance Computed Tomography) scans do reveal a number of lung abnormalities effectively.

      Moderator comment: I have removed the link(s) directing to site(s) as it is broken. If users want this information please use the Private Message service to request the details.

    • rosanna55577
      rosanna55577 Megheart

      Posted

      Thanks, after I get a Pulmonary dr. I will see if he or she will order an HRC T.
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