Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and muscles... The symptoms that distinguish rheumatoid arthritis from other forms of arthritis are inflammation and soft-tissue swelling of many joints at the same time (polyarthritis). The joints are usually affected initially asymmetrically and then in a symmetrical fashion as the disease progresses. The pain generally improves with use of the affected joints, and there is...

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COUGHING...I think it's a Sjogrens flare up

I would have posted this in the Sjogrens group...but no one has been there since December!


I am coughing a LOT (albeit in spurts). The only other time I coughed this much was last year when I was in an RA and Sjogrens flare because I had to stop my meds for C-Dif infection.


The reason I am almost certain the coughing is related to Sjogrens is because when I take my Evoxac which is a medication that helps produce saliva, it stops the coughing and when I am due for another dose, it starts up again... which is exactly what it did when I was in my bad flare-up with both.


Now my meds RA is under control (with Orencia and MTX), but Sjogrens is not which is weird. Usually either they are both ok or both not ok cause the RA meds help the Sjogrens. I'm befuddled.


I've added Mucinex cause that's what the Sjogrens doc prescribed when I was in my bad flare and coughing. 


Always something, huh?


Perplexed.

Replies

WarriorGal
WarriorGal

And I HATE menthol cough drops and hard to find any without menthol!!

Hope I can sleep.
linzsey
linzsey

Hi Warrior

Have you tried Brachs Lemon Drops - I use them - remember I have Sjogrens too- and I don't like taking my Evoxac more than once a day because they make me sweat so bad!!!! I think my Sjogrens is getting worse as well but it could also be because of the springtime, pollen and spores are in the air. The lemon drops help me. Best wishes
WarriorGal
WarriorGal

I take it 3x a day and was up to 4x during my major falre up!

Thanks for the info - where do you get them?
doodlebug25
doodlebug25

Cough is very common on SS. It can be just from dryness in the airway, but also can be from airway reactivity (like that seen in asthma) or inflammation in airways. Then there's inflammation of the rest of the lung tissue too. You have seen a pulmonologist, correct? I think the concept that biologics for RA will help SS is not as promising as we'd like it to be. Hence all the different symptomatic treatments for the eyes, mouth, etc. Unfortunately, SS doesn't get as much attention as some other autoimmune diseases, and primary SS can have significant complications. (Of course there is some debate on whether primary and secondary should be dropped -- like seropositive and seronegative RA)
WarriorGal
WarriorGal

nope. have not seen a pulmonary doc...but do they know anything about SS?? ENTs do NOT!! last year when I was coughing I wa soverdosed on antibiotics because my doctor didn't believe me that it was SS.

all i know is that evoxac and mucinex help.]
depotblue
depotblue

doodle are you a RN or even a doctor for what pays the bills? I enjoy all your posts.

warrior, my pulmonologist who I have seen for decades does not know squat about SS, talk about it, reference it, or interact with my rheumatologist but I have frequent pneumonias, and reactive airway and asthma and I have a lung treatment plan (inhalers, inhalation machine crap like that) and I have sjogrens so I have to troubleshoot across a lot of lines. i can't take the spit pills as I fondly call them more than twice a day - the inhalers are what saves me. hard candy, sugared or non sugared are a good distraction as is welding myself to a water bottle.
doodlebug25
doodlebug25

Autoimmune diseases all have possible pulmonary complications (whether from the disease, or from the medications), though it is not that common. But...it can be serious.
I would suggest you see a pulmonologist and ask about it. I would hope he/she would take the opportunity to educate him/her-self on it. Some of the bigger centers have a pulmonologist as part of the multi-disciplinary team.

And Depot...I am a physician (but I am not a rheumatologist and I do not play one on TV).
WarriorGal
WarriorGal

I am personally aware of the lung complications of autoimmune, having had a pleural effusion and partially collapsed lung that put me in the hospital for a week to drain the rheumatoid fluid!
WarriorGal
WarriorGal

BUT...after my experience with more than one ENT - one of which was scheduling me for sinus surgery when I FINALLY got my SS diagnosis! - I am very leery of doctors who know nothing about SS and will totally misdiagnose and wrongfully treat.
WarriorGal
WarriorGal

AND I think it's a SS flare-up that is also what is causing my fatigue/tiredness.

BTW, Doodlebugs, my SS specialist, head of the EastCoar Sjogrens center, says Humira is in the process of being approved for SS. We are all different, but I KNOW FOR A FACT that when I had to go off biologics and MTX for c-Dif infection both my RA and SS flared like CRAZY! There was not enough Evoxac in the world for me!! I was SOOOO dry! And then when I went back on my meds - gone! Back to normal.
doodlebug25
doodlebug25

I think for me too humira helps. Though I only have a few features of SS, when I took a self-imposed medication break last year (stopped MTX and Humira) is when I started having significant issues with my eyes, that led to diagnosis of dry eye syndrome. Like all of these meds, for some they can help more than for others, and hopefully more information on usefulness in SS will be coming. Recent improved classification for diagnosis will help with then getting more research and treatment protocols approved.
I recall your comments in prior posts about serious pulmonary complications you have had due to RA. But SS has a few things not typically thought of in RA, like airway issues.
oceans11
oceans11

I've had an "unexplainable" cough since 2003. It starts dry & then becomes productive with more coughing. Then I get diagnosed with RA in 2013. After hearing more & more about SS I thought, "OMG That must be it"!!! But I don't have any dryness of the mouth or non tearing issues & then found out from past labs that my Rheumy tested me for SS upon my original visit & it was negative, "Love my Rheumy, he's so proactive"! But felt kind of bummed out that the cough is still technically undiagnosed. Maybe I have an allergy to my dog, or maybe it was the 20yrs of smoking (I stopped 10yrs ago).

I do feel it's inflammatory related though. I was once put on a steriod "step down" dosage where it was for 5 days & went 5 pills 4, 3, 2, 1. On the first day of 5 pills I did not cough once which was a MIRACLE!!! Then by the end of the 2nd day (consisting of 4 pills) I coughed once & then everyday after that I started coughing more & more until i was back to abnormal again! Oh well, I live with it.
MarleneJ
MarleneJ

Interesting thoughts about SS. I confess, that other than living on xylitol gum in the day, Xylimelts at night, and eye drops constantly I have never thought much about this autoimmune disease.

I lived with chronic bronchitis for many years, before RA. I have never smoked, but my lungs have been exposed to a lot of second hand smoke, to say nothing of cadmium, lead and asbestos when I was making silver jewellry.

My allergist told me my asthma was allergy based. Allergy shots helped enormously, not needing to go the ER daily, and finally getting over the chronic bronchitis.

I got a bad cold a month ago visiting my grandkids. It turned into sinusitis, which Doxycyline got rid of. But, I was still coughing up a lot of junk, and now, weeks later, it is feeling more and more like chronic bronchitis. My husband took 3 weeks to get over this cold, and usually it is more like 3 days for him. So a bad virus/bacteria or whatever, for sure!

But I am stuck coughing all day and night long. I have had to stop wearing my CPAP because I have a full mask, and coughing into it is a frightening experience. I was just playing my flute, and my mouth and throat got dry. Every time I went to blow on the flute, I started coughing. I was going to stop playing, but took some decongestant and cough medicine in order to finish the practise session.

So, now I am wondering if this hacking is SS based? Well, if it keeps getting worse again, I will have to probably go to the ER, since it is the Easter long weekend. I'll bet no one there has a clue about Sjogren's. Even my dental hygienist had never heard of it, and it was my rheumatologist who diagnosed me who talked to me about dental care and SS. And recommended I get my teeth cleaned more often.

I hope it is SS in a way, because I am just getting my digestive system working after the antibiotics. I really don't want to go another round on them. Or, maybe wanting it to be SS is a bad idea - because I have no idea what would help it. And no, I can't take those SS meds. I am still sweating through 3 changes of clothes a day, and a few at night since I was on prednisone again for the lung and sinus issues. My mouth is so dry, and yet, I perspire like I just ran the marathon.
WarriorGal
WarriorGal

Marlene - my guess is that SS is complicating other issues for you. I was tested for SS and my test came back NEGATIVE. Then I saw the head of the East Coast Sjogren's Center. He took one look at my hands, heard my dry mouth symptoms (my eyes are also dry but they never bothered me so I didn't mention it) and he said: "YOU HAVE Sjogrens! No doubt about it!"

He said he would not put me through a lip biopsy to confirm it, he was that positive, but we did do a salivary gland scan which is non-invasive and it showed that my salivary gland was basically non-functioning.

I am fortunate that I am able to tolerate Evoxac cause it's a life-saver for me. That and lots of sprays and lozenges. Biotene products do NOTHING. I really like ACT dry mouth lozenges.

But a couple of things you need to know if you have dry mouth:

1) You need to be very conscious and conscientious about dental hygiene because saliva contains enzymes that protect us from decay.

2) Use non-alcoholic mouth wash.

Soooo...you definately *can* have SS with a negative blood test for it!!
linzsey
linzsey

Hi everybody - I am sorry I am not able to read all of these wonderful posts - my eyes have been very affected by my RA and Sjogrens cataracts and glaucoma too- and then I have brain fog also i can't follow long posts anymore. Now you all know I am not bright as I once was...but I love to see the activity and lots of posts on here wooohooo!!!

Warrior - I get my Brachs lemon drops from Walgreens, but I think you can get them just about anywhere but any lemon drops will help. and no side effects
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