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.
Hi Millie,
I was diagnosed just over a year ago, my blood score was very high but compared to most people my symptoms are fairly mild but yes I do get short of breath especially climbing stairs and muscle fatigue can be a problem again when climbing stairs and general overall tiredness. I can't take Plaquenil as I reacted badly to it but I can manage the pain with paracetamol and ibuprofen alternatively every two hours. .Just don't panic it may not get as bad as you think, I thought it was the end of the world but my flares are few and far between and I've learned to just deal with the symptoms as they arise, rest as much as you can when you need to, gentle excercise and fresh air helps me and a good multivitimin with a probiotic and anything else that helps the immune system, theres lots available for dry eyes and mouth, I find a hot damp cloth is great when my eyes are sore. Try stay positive and the best of luck.
Thank you so much Brenda. I was just diagnosed but it's been 6 months since the symptoms started and had been trying to find out what the issue was. Im a bit in panic mode and trying not to. My skin is hot to be the touch when the symptoms act up. I have more than just dry eys and mouth. I have fatigue, numbness, cold chills, muscle stiffness. Seems like it's always something. Thanks so much for replying.
Hi Millie
My symptoms stayed at just dry eyes & mouth for a long time ,,, or so we thought then. I had & have tons of other symptoms. I also have lung issues, some or all of which are COPD.
From which I have learned this: when you have ANY lung symptoms, get them checked out, whether it's a dry nagging cough or shortness of breath. There seems to be a great reluctance to get treatment for the lung stuff by folks in the forum. This is, IMHO AND in my experience with serious lung problems, a mistake. Lung function preserved is a good thing, because once it's gone it's gone for good. One might not miss that first 4% but @ 10% loss & more it's noticeable. There are tons of excellent lung meds if a doc says you need one, regardless of whether the cause of the problem is SS or something else.
Hi aitarg,
Thanks for the info. I got my lungs checked before I was diagnosed and came back as ok but Im going to go to another dr to make sure. Thanks
I know this post is 2 months old but this sounds just like me. The shortness of breathe is one that frightens me most as I was told could be scarring .... I'm awaiting follow up results of chest X-ray. I was started on plaquenil 2 weeks ago.... it doesn't disagree with me but I was told could take 3 months for to be effective. By the was I have arthritis symptoms too
Hi Millie,
I was diagnosed with Primary Sjogren Syndrome in 2010, after many years of suffering with pain and fatigue. I was frustrated I felt alone; as no one took my illness seriously... until after my diagnosis. I was relieved when I was finally diagnosed at least now, I know the pain and fatigue I have suffered for years is real and not in my mind, as I was often told. Every day is a challenge; my symptoms have got worse. I was put on Hydroxychloroquine (Plaquenil) for my Primary Sjogren Syndrome but it caused nausea and vomiting so they took me off this medication. As Sjogren Syndrome is not widely known in the UK, there are no Sjogren Syndrome specialists in our rheumatology department. I had to research the disease myself in order to understand what was happening to me.
In 2012, I had pneumonia and pleurisy caused by Primary Sjogren Syndrome, this affected my lungs I now struggle with shortness of breath and sharp pains. I am now experiencing burning sensation in my legs and hands and sometimes through my whole body; no one can tell why. All I know is Primary Sjogren Syndrome has affected my mobility; my joint pains and fatigue are unbearable.
Did you go to see your rheumatologist?
Hi Glenna
That burning, with or without the needles &sharp pains sounds like Small Nerve Peripheral Neuropathy, which can come with Sjogren's. Because it affects small nerves it won't show up on EMG and/or nerve conduction studies. If you've got a neurologist, talk to him or her about it. I use gabapentin.
Hi Aitarg,
Thank you for the information. I will talk to my neurologist about it, but I did mention it to my neurologist. I will also ask her about gabapentin! Does gabapentin work for you?
Thank you again
It's been awhile since you posted Millie1202 and somehow I missed your post first time around.
Lung symptoms and small fibre neuropathy were among my first symptoms. The shortness of breath and coughing for months on end landed me in hospital twice. The first time in 2006 I was quite ill and subsequently referred to see a respiratory physician who kept treating me as though I had asthma, but the treatment didn't work.
The second time in 2008 after coughing uncontrollably for four months, the doctor in the Emergency Department immediately said I think you have Bronchiectasis. He ordered an HRCT (High Resonance Cat Scan) and sure enough he was correct. Widespread bronchiectasis in both lungs.
I often wonder if the prolonged infection I had which probably caused the Bronchiectasis (Mycoplasma Pneumonia) caused the autoimmune response leading to Sjögrens Syndrome or did I have S.S. prior?
Two years ago I had another episode of shortness of breath and immediately went back to my (new) Respiratory specialist who started me on Azithromycin. He has been monitoring my lung function every six months.
So no, SOB is not something you want to delay seeking help for. Equally you need to be checked out for cardiac issues.
I always thought my shortened of breath was due to being unfit. Several years ago I tried to get fitter but stopped. It did help to a degree. I was anemic so thought that was why. Then u was told I had vitamin D defficient. When I had bronchitis in January my breathing was worse and painful.
So now I know why my breathing was like it was. I'm left with muscle around my lungs painful as I take a sudden big breath in, best I can describe it, making the muscles sore all the time. I will find out more soon as will see specialist. So your not alone and for the first time I know it's not just me so thanks for posting xx
Did you get your vit. D level up?
I am also having the same problem but for pain I am using paracetamo;. I had Brochitus and after xray they found a small amount ofscaring on Lungs, that caused my shortness and pain, I take sudden breath of air, without knowing when its going to happen. Im told I over inflate my lings and that causes the pain in my rib muscles. I am awaiting more tests at the Queen Elizabeth Hospital and hope they ca get to the bottom of my worsening symptoms. I do feel for you, what your going through, infact all that have posted on here and I am so grateful you did.xx
yes I am on Vitamin D still, thanks for asking. I am waiting for a letter which i hopecomes soon as with all the sneezing, my ribs are very painfull- I mentioned. this in an earlier post. its good to chat to others like myself thanks.
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.
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
I was diagnosed with Sjogrens in 2002, which I know I had it long before then. I have an enlarged spleen caused by Sjogrens. I've been having some shortness of breath since 2015, was sent to a pulmonary Specialist, did a MRI and showed my right diaphragm is to high up, did breathing tests and couldn't find the cause of it, said I just need to lose weight. I think this might be from my Sjogrens. Then 3 months ago I started having alot more shortness of breath, it's all the time. I even went to my Cardiologist and had an echo and stress test. They came out fine. She said I just needed to exercise and lose weight. I am only 15 lbs. Overweight. How do you exercise when you have shorness of breath all the time, when the doctors don't know what is wrong with you that is alway their answer. My primary doctor ordered a chest xray, it came out fine. She believes the shortness of breath is from Sjogrens and I needed to try and get in sooner to my Rheumatologist or go to ER. My appointment is the 17th, if it gets much worse I will need to go to ER. She said I don't have COPD. I was taking Evoxac since 2002, however my body got use to it and quit working a year ago. That is when my breathing got worse and so did my sjogrens. I also have Osteoarthritis, Raynauds. Last year I had abnormal lipnoids on one breast, thank goodness it didn't show up this time. I was on Quinacrine for eight years, it turned my skin yellow, so he decreased it to every other day, its a preventive to slow down the Sjogrens. He took me off of it and Mobic cause the shortness of breath.
Carol, I can relate to you. The muscles in my chest are painful everytime I take a breath. Alot of discomfort and tightness in chest. I am going to the ER Monday, cannot wait till my appointment to the Rheumatologist, It keeps getting worse.
Hi thanks for your message. Its been more than year since i was told i had bronchitis and in Feb i thought it was gone, the shortness of breath seems to improved since i can control the pain now with paracetamol only. Still the back of the ribs catch me, when i yawn or lie down or lift something. I had an MRI scan which shows more and reults are better than i thought. Just a small amount and nodules that they are not concerned about. It may help if they do MRI scan for you as a normal xray not as much shows up. It is the longest i have ever been slowed up, also had to have alot of time of work due to it. I have cut down to one morning only now. I am carer for hubby and with shoping, house etc thats enough. Take care Rosanna, hope things improve for you too.
Just noticed this text Rosanna, as for loosing weight yes it is difficult with breathing problems. If you geta chance to ask you specialist about your breathing problem - ask how much scaring is on your lumgs. I asume you are not a smoker. Lots of previous chest infections can cause scaring. As in my case. I have had the pneumonia vacination last year and now having the parnova 13 vacinaction (cobined several types of pneumonia vacines) to help as just the one is not giving me enough imunity due to S. S. hope this helps xx you sound like you've been through it xx