Sjogrens symptoms

My GP is unable to attribute my symptoms to Sjogrens or anything. I was told I have Sjogrens 3 years ago. I am feeling increasingly unwell, at first the dryness. I also get numbness and a stinging feeling all over my face and mucous in one or both nostrils when asleep at nightime. I do feel extra unwell when these symptoms occur. Has anyone experienced these symptoms with Sjogrens?

[Caspiana]

Hello Hidden .

I have Sjogren's , Raynaud's and Rheumatoid Arthritis that caused my lung disease. Recurring sinusitis, post nasal drip , muscular and joint pain, dry skin, eyes and mouth are all part of my symptoms. What kind of treatment are you receiving? I think I am lucky because my current treatment (Remicade and Methotrexate) seem to be helping my symptoms. These past two weeks I have been feeling as you describe. Just general malaise , but the continuous low grade fever really can slow me down an awful lot.

Cas xx 🌿🌷🌿

[Hidden in reply to Caspiana]

Hi Caspiana, thank you for your reply. I am not receiving any treatment. I was diagnosed with osteoarthritis at the same time as Sjogrens but the rheumatologist said one of the blood test markers did point towards rheumatoid arthritis. The slightly mucosy nostrils only occur whilst in bed sleeping and I can breath with it but feel slightly unwell like I am getting something but the nostrils starting clearing by “popping” after being upright. I am getting this more frequently over the past year or so. I have also had 3 chest infections over the past year, the last one developed into pneumonia which I am recovering from. I dont know if these respiratory probs cld be related to Sjogrens. I appreciate you sharing your symptoms as my GP isn't knowledgeable about Sjogrens. 🙂

[Caspiana in reply to Hidden]

Hello again 😊

I am a bit baffled as to why you don't have any treatment for your Sjogren's syndrome. Usually the treatment is pain management and immune suppresses. How is your osteoarthritis being managed? Does your doctor have a plan? I think first and foremost you need a Rheumatologist who can manage and is knowledgeable about your illnesses. Rheumatoid Arthritis can be a debilitating disease if left untreated, and sometimes even when treated. My lung disease is caused by these autoimmune diseases and now I am awaiting a lung transplant. However, please don't worry, not everyone with autoimmune diseases get lung disease although yes, it sometimes manifests itself in various respiratory symptoms. I can't say for certain if your lung infections were due to Sjogren's, but I must say you've had quite a few bouts of infection and the latest developing into pneumonia is worrying.

I used to have a lot of trouble with sinusitis and rhinitis but had an operation a few years ago and things got better. I would encourage you to see an otorhinolaryngologist. It is so uncomfortable to have sinus issues on top of everything else.

Please don't hesitate to reach out again if you need to talk. *Hug* 🌼

Cas xx 🌿

[Hidden in reply to Caspiana]

Hi Cas

I have eye drops for my dry eyes and cremes for dry skin and the Rheumatologist is monitoring my symptoms annually. I take anti inflammatories when I need to for pain in my knees. The arthritis doesnt bother me too much atm, it is the feeling of unwellness and extreme tiredness by midday, the slight mucous in nostrils, feeling like I could be coming down with something but dont (apart from the chest infections and recent pneumonia) that I have bn concerned about. These have become more frequent so I will discuss when I next see him and I will with my GP. It has bn a wake up call getting pneumonia. I am sorry that you are in the position of needing a lung transplant but I do hope that you continue to feel an improvement with your medications in the meantime. Thank you for talking to me about your experiences, it has helped.

Jas 😌 👍🍀

[Caspiana in reply to Hidden]

Hey Jas, I and so many here can relate to the exhaustion. I know everything is a struggle. And this time of year in my area in Japan it is very, very dry and cold. So the dry eyes and mouth issue becomes very uncomfortable. Please do let us know how you are doing.

Thinking of you. xx 🌹

[Hidden in reply to Caspiana]

Thank you 🌼 🌻 😊

[Georgiab123 in reply to Caspiana]

Hi I suffer Sjögren’s syndrome suddenly my lung show unusual pattern iv got my first appointment at lung clinic next month how long have you had your trouble my lungs were perfect before starting methotrexate 5 years ago

[Caspiana in reply to Georgiab123]

Hi Georgia.

I was diagnosed with RA and Sjögren’s syndrome I'd say about nine years ago. My lung disease appeared four years ago. I am also on Methotrexate. My dose however has always been a bit low so the lung consultants I have seen do not think my lung disease was caused by Methotrexate rather they think my autoimmune diseases played a role. I

I hope you get answers at your clinic appointment next month. xx 🙋🌼🌱🍀🌻

[HungryHufflepuff in reply to Caspiana]

Hello Caspiana 🐠🐟🐬🐳 I’m sorry to know you’re not feeling great. I hope things start to improve soon.

My mum has Raynauds and is now seeing a rheumatologist too. She gets hugely swollen and painful fingers. I wonder if you’ve ever used the compression gloves (I’ve seen them online) and if so do they help?

[Caspiana in reply to HungryHufflepuff]

Hi Huff😊. I do remember you mentioning your mum's condition. In the early days almost ten years ago, when my symptoms were all over the place had used a hand brace because of the swelling and pain. It did help. I don't think they were as tight as compression gloves.

Thank you for the wishes. 💕

How is your mum doing? xx

[HungryHufflepuff in reply to Caspiana]

Thanks for your reply 💐

My mum isn’t too bad except for her painful hands, and problems with her ears (though I don’t know if that’s connected or a separate issue?) I’ve also seen compression gloves for oedema, I don’t know if these would work in the same way. The gloves for oedema look as if they’re latex whereas the gloves for Raynaud’s / rheumatoid arthritis look more like cotton and apparently contain copper too. The reason I ask is because the oedema compression gloves have better customer reviews. 🤔

[Caspiana in reply to HungryHufflepuff]

Hmmm..... I don't know which to choose but the latex sounds quite uncomfortable if worn for long periods of time. I wonder if they'd also cause some skin irritation? I think my hand guards are made of cotton. What does your mum think? What issues does she have with her ears? xx 🙋🐕

[HungryHufflepuff in reply to Caspiana]

The latex gloves do look as if they’ll be uncomfortable, in all kinds of ways. My mum will try the cotton ones. The issues she’s been having with her ears is, well how she describes it is they feel numb but also sometimes are painful to the point of making her nauseous, and sometimes feel like she has water in her ears like you sometimes get from swimming. But the ENT (?) Doctor didn’t see anything particular or conclusive wrong with her ears when she had an appointment in November.

[Caspiana in reply to HungryHufflepuff]

Hmmm..... I have no idea, but it almost sounds like nerve pain, maybe damage to the peripheral nervous system which can be excruciating. Is she diabetic? Is it constant or intermittent?

How uncomfortable for her, I am so sorry Huff. It is awful to be in constant pain. And yes,do try the gloves. xx 😊😘

[HungryHufflepuff in reply to Caspiana]

Thanks for your concern 💐

My mum isn’t diabetic and I don’t think she’s been specifically tested for diabetes but has had various tests in recent months and I guess that would have showed up if she was diabetic. The issues with her ears are intermittent 🤔 But, one issue at a time and hopefully the gloves will help with her hands.

[Caspiana in reply to HungryHufflepuff]

I hope so too Huff. *hugs* xx 💜

[Fennella02]

Hi Jasmino. I have lupus and secondary Sjögrens. I also have small airways disease/bronchiolitis as a result. Feeling unwell but not being sure why is a regular feature. I think SS can often be under treated as rheumatologists seem to under estimate how severe it can be.

[Hidden in reply to Fennella02]

Thank you for replying. Yes the Rheumotologist just handed me an information booklet when I was diagnosed, which emphasises dryness to eyes, skin etc but has very limited information. My GP also has limited knowledge about Sjogrens which is why it will be helpful to find out the experiences of others.

[Fennella02 in reply to Hidden]

Have you joined the lupus uk group on HU? Lots of fellow sufferers there. There is also a uk SS FB group x

[Hidden in reply to Fennella02]

Thanks. I will have a look at it 👍