Hi there,
Been reading through posts on this forum for a while - it's been an excellent source of information. I'm a 33yr old male from the UK who has been treating various Sjogrens symptoms for 3 years. Started with chronic dry eye that appeared overnight, mouth and nose followed suit 14 months later and I'm now experiencing higher levels of fatigue and breathing issues/dry cough.
Blood test was negative and my salivary gland ultrasound was unremarkable. My schirmer test showed little or no tear reservoir so I've been fortunate that my GP's have been happy to treat as Sjogrens so far. Med wise I take Pilocarpine and prescription eye drops(snotears but by it's new name).
I seem to develop a new symptom once a year at the moment. I consider myself lucky in the grand scheme of things and although the lung issue is a concern I had my X-ray today and will push to get the appropriate tests/treatment if necessary. Dr Google makes lung involvement seem like a 5 year death sentence but having read previous posts it sounds like people just add it to the list of lifelong symptoms to manage!
Not yet on Plaquenil but considering asking to be prescribed at my next appointment. Would people generally suggest a pre-emptive strike or waiting until I really feel I need it? Also re the lung involvement- does anyone just have shortness of breath and a mild dry cough as one of their chronic symptoms due to dry mouth?
I've just started following the Paleo diet as I've noticed some people have seen success eliminating certain foods from their diet. I am highly sceptical as to what difference it will make but I'm more than willing to give it 30 days and re-evaluate. Has anyone had any success cutting out dairy/gluten/grains?
Cheers!
New-sjo
Welcome to the board, New-sjo. I have developed a chronic cough this winter that I'm hoping will go away when spring or summer arrives. The source is not my lungs though, it's itchy throat. Even worse is my itch is lower than where my cough scratches. It's very uncomfortable leading to sore throat and sometimes cough so severely to the point of gagging.
I don't have answer for you about lungs, plaquenil, dairy, gluten or grains. However, I find low to no sugar diet (including no to low carbs) helps reduce joint pain. I don't notice an effect on dryness symptoms, though.
Hello and welcome, new_sjo. I'm glad that your doctor is happy to treat you as having Sjogrens without putting you through a salivary gland biopsy.
I did have a dry cough for the first couple of years of my symptoms, however that seems to have gone away, at least for the time being. Maybe it's worth waiting, however you should of course weigh up any advice your doctor gives you.
Apart from various things that relieve individual symptoms (eyedrops, saline nasal mist etc.), I've never found anything that really makes me feel the SS is going away. But the symptomatic relief does make a big difference to morale.
Personally I have been reluctant to consider Plaquenil in view of the possible side effects, but others here are taking it and could talk to you about it.
Re. diet, I have been vegan for many years, but do eat gluten and grains - I did consider trying to cut out gluten, but as my diet is already rather limited, I couldn't face it!
Welome, new_sjo,
I'm glad you found us since it is so much better knowing you're not alone.
I started my journey with a similar 'diagnosis' of Sjogren's in 2002. I find we all may have different experiences, but the support and information here have help me so much.
Again, WELCOME, new_sjo.
Regards, Elaine
Welcome! It sounds like so far things are pretty much under control. I wanted to tell you how I deal with my dry lungs. I have had symptoms since 1964 and am now 76 years old with lots of issues. I developed asthma in 1981 but it hasn't ben a baad case. I have been on inhalers since then though.
In 2003 I was finally diagnosed with Sjogrens. In 2005 I developed a case of Mycobacterium kansasii. This is a type of TB that is not contagious but can be dangerous if not treated. I had it in my lungs, spleen and liver. I was on 8 pills a day for one year and then cleared by infectious disease. However, I had to pays more attention to my lungs then and was coughing some. I went to pulmonary and they gave me the usual inhalers plus a nebulizer with Albuterol. I used this a couple months but my lungs still hurt like they were bruised and I had a little cough.
I am a retired nurse and the thought crossed my mind that putting the albuterol in sterile saline for the nebulizer would help moisten my lungs. I checked with my immunologist and he said yes and to use 2 ampules of saline with 1 ampule of albupterol. I have been doing this all these years and it works. Sometimes I do 2 times a day and sometimes 1 time a day. It depends on the humidity and how dry my lungs are. This really does the trick for me. I also do something that is really crazy but it does help me. At night I can get dry. Years ago I used a person humidifier but I choose not to do that now. I wear a fa ce mask at night when I sleep. It is the soft green colored on that is rectangular shaped. Can buy a box of 20 at Walmart for 5 dollars. With the mask you rebreathe a portion of your exhaled air and it contains moisture which helps to moisten your lungs when you rebreathe it.
When one has chronic illness for years you come up with some weird ways of dealing with bothersome symptoms. Another trick I learned when I was really lung when I had hay fever so bad is also a little crazy....but blame my Mom for this one. Buy cheesecloth...it comes in a package of around 5 yards at the dry goods (material.sewing department) at Walmart. Sometimes one can find it in smaller packages in the paint departments of hardware stores. You can also buy it at some dry goods departments of the bolt of cloth by the yard and it is much cheaper.
Keep the material in a plastic bag to keep it clean. When needed take it out and cut off a piece of cloth about 12 inches long or so. Put the cheese cloth in the bowl and pour clean water like distilled, etc. over it. Wring it out some and lay down and place it over your nose and mouth. If you are terrible dry this is so soothing and it help you to be able to sleep. I used to sleep in the recliner years ago with this cloth and rewet it as needed. It should be noted that you need to use new cloth periodically depending on amount of use, etc. Kepping your lungs moist with a clean water definitely helps to cut down on some lung infectious.
Good luck. Irish
Welcome to another male.
Thanks for all the responses. Been asked to go back to the GP tomorrow and hopefully getting a referral to the Pulmonologist.
Shortness of breath much the same and I've been experiencing a bit of frothy saliva/mucus which I'm obviously hyper alert to given my usual mouth dryness.
Will see about a CT privately if the X-Ray shows nothing and the GP is reluctant. Seems to be a good idea as a baseline in case I have lung issues going forward from what I've read. Still hoping it's just an infection I'm struggling to shift that will disappear while I'm waiting on tests.
Grateful for all the advice you've passed on. Cheers!
JUST ANOTHER THOUGHT. SO OFTEN WE THING THAT A NEW SYMPTOM IS FROM AUTOIMMUNE DISEASE AND THAT IS NOT ALWAYS THE CASE. WE CAN HAVE OTHER HEALTH ISSUES THAT WE SOMETIMES IGNORE THINKING IT IS JUST MORE SJOGRENS AND THERE IS NOTHING THEY WILL DO. SO GLAD YOU ARE SEEING A PULLMONARY. GOOD LUCK. IRISH
Hi guys- thought I'd post a quick update.
Still having occasional shortness of breath, as well as, rib, chest and between the shoulder blade pain.
Pulmonologist last week did lung function tests and wasn't concerned about my oxygen levels or lung capacity after checking flow and the finger o2 test.
Didn't seem to know much if anything about Sjogrens but he seemed confident there were no issues with my lungs. A full round of bloods back with everything being within the normal ranges from my GP as well.
Think I'll wait out the winter in case my lungs are just dry and see if they improve when the milder weather kicks in. If I get a severe episode of shortness of breath I'll present at A&E.
Cheers!
I have a simple meditation that helps me. I get into a comfortable position and close my eyes. With my eyes closed, I look to the top of my forehead. As I breathe in I think, "I am". and as I breathe out I think, "calm". I try to repeat this for 15 minutes.
New-Sjo,
I had/ have symptoms like you describe and I was diagnosed with asthma. Many people with Sjogrens can develop asthma. If I get any type of upper respiratory infection, it really aggravates it. I try to have a vaporizer going all the time as moisture really helps me.
My sinuses are horribly dry and this causes thick dry mucous which doesn?t help at all. Dry heat, strong wind, and fans really dry me out and make me cough.
I use nasal irrigation?s with Budesenide daily and I actually think it helps. It?s a steroid and you need a prescription but it cuts down on inflammation and the saline nasal rinses help moisturize and gently clean out the gunk. My ENT ordered this for me. I have steroid inhaler too but I try not to use both steroid meds at once as it predisposes me to thrush.
Welcome to the forum. I?m so sorry that this has happened to you but you will learn how to deal with it and minimize the symptoms.
Sounds like you have a great GP.
Kathy
It is good that your lungs sound good and your O2 sat is good. However, I think you are right in your thinking to pursue a CT to rule out anything that might be hiding.....plus give you a good picture for comparison in the future. Also, our bodies are so weird at times and we can show up with things that doctors don't think of. That is just the way it is with people with autoimmune diseases. Good luck. Irish