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Sjorgrens remission

Posted , 7 users are following.

mandy95
mandy95

does anyone know if Sjorgrens can go into remission? Also I will be flying in two weeks time so is there anything that I need to be aware of?

Thx Mandy

3 likes, 10 replies

10 Replies

  • lily65668
    lily65668 mandy95

    Edited

    Very definitely - yes it can! That's one of its few good points! Mine's been largely in remission for six years now. I'm 71, btw. I wouldn't say I'm completely symptom-free, but at the height of the condition, around the age of 60, I was suffering from dry mouth and eyes - with both mouth and eyes painfully cracked and bleeding at the corners - Reynaud's syndrome, carpal tunnel syndrome, rheumatoid arthritis, peripheral neuropathy and various skin eruptions. All I get nowadays are a few aches and pains in muscles and joints - about par for the course at my age anyway - and the odd attack of conjunctivitis. Long may it last!

    The main thing to be aware of when flying is that the air in planes is very dry. You'll therefore need to take your eye-drops, and also mouth spray (if you use one). Drink small amounts of water (not fruit juice or sodas) at frequent intervals throughout the flight - and also while waiting in the airport. I always find airports are hot, dehydrating places too. Avoid drinking large amounts of water in one go as this tends to wash away what little saliva you have.

    If, like me, you have a tendency to sinusitis - also down to the thickening of secretions in Sjogren's - you might also want to take some kind of mucolytic (mucus-thinning) medication with you. I take bromhexine tablets, which are available OTC where I live, but not in the UK (if that's where you are), as I found out to my cost when I managed to forget to take them with me on a recent trip to London. All the chemist could offer me was cough syrup!

    I hope you too get lucky and your Sjogren's goes into remission soon.

    • mandy95
      mandy95 lily65668

      Posted

      Hi Lily,

      Yes I currently live in the UK but all my children currently live in the USA, we are going in two weeks time so I will definitely get some of the medication that you refer to.  I also have sinusitis constantly so always seem to have headaches.  How long did it take for you to finally go into remission? And thanks for the information most useful.  Did you suffer from itchy skin when out in the sunlight?

      regards,

      mandy

    • lily65668
      lily65668 mandy95

      Edited

      Hi Mandy. Although sinusitis is rarely listed as one of the symptoms of Sjogren's, a lot of us suffer from it. I think it makes sense, as Sjogren's tends to dry up all our secretions. You definitely won't be able to get bromhexine off-prescription (and maybe not at all) in the UK but you should ask your doctor or pharmacist about some other kind of mucolytic.

      I don't recall suffering from itchy skin in sunlight, but then I've never liked the heat or strong sun anyway, so I tend to stay well out of it! I believe that Sjogren's can make your skin sensitive to sunlight though.

      My remission started very suddenly and was complete - or at least as complete as it's ever going to be - in only a few months. This followed my realisation that I had some kind of "hot line" to my own immune system and could control my symptoms. I've detailed this somewhat strange episode elsewhere on this site in at least one post so won't go into it again.

      My history started with dry mouth at the age of 50. Over the next 10 years I developed a ragbag of apparently unrelated symptoms. I consulted my GP, dentist, an ophthalmologist, neurologist, dermatologist etc. and no one put them all together. I have to admit I didn't either, though I'm a former nurse (SRN in my day). It wasn't till 10 years down the line that my GP finally thought to order a blood test for anti-salivary gland antibodies that I finally got a diagnosis. It was five years after that, so 15 years after the start of the symptoms, that the remission came.

      Hope you go into remission too. You have to work around your condition, obviously, but my experience has shown me that I mustn't feed it by allowing it too much importance in my life.

    • mandy95
      mandy95 lily65668

      Posted

      Hi Lily 

      thanks for the update it has been most helpful.

      mandy x

    • joanne15371
      joanne15371 lily65668

      Posted

      Thanks so much for this affirming note! I just developed Sjogrens in response to a migraine prevention drug and I keep alive the hope that the symptoms might lessen or go into remission. Did you do anything in particular to help this happen? I eat a healthy diet but I'm having trouble giving up coffee!

      Thanks for any thoughts....

    • Tardigrade45213
      Tardigrade45213 lily65668

      Posted

      Hello Lily,

      I'm sorry but i can't find your original post with details about your remission: could you give the link please ?

      Thank you so much !

  • sally83545
    sally83545 mandy95

    Posted

    Hi Mandy,

    I agree with Lily! Make sure you take everything you need to stay hydrated for eyes, skin, nasal passages. I started using saline spray regularly a few days before flying and while on the plane whether I felt dry or not and didn't have any problems with dryness. One thing that I noticed while flying is that staying seated for too long caused me to have pain in my back neck and shoulders. My knees got stiff as well. So the next flight I made it a point to stand up at the back of the plane when I could. I looked a little awkward at times but it was worth it so don't be afraid to stand up in the aisle and stretch a little. Also make sure you carry on your meds and have them handy especially anti-inflams. Wear super comfy shoes for the walking in the airport. I always take a bottle of water on the plane with me in so I have it at any moment. Force yourself to drink so you hydrate from the inside. And I take my own snacks that I know I can tolerate without problem.

    The skin on my upper arms gets itchy in the sun and it reminds me to put on sun screen. I have always been a sun worshiper and wearing sunscreen is new to me. Since my diagnosis I have been very aware of my exposure and itchy arms helps remind me! 

    I am working hard towards remission I believe in it. I have cut out gluten which helped alot with the pain and digestive issues. I have been on the Paleo AIP for a month now and have experienced even more improvement. Plus I think I am really starting to feel the benefits of the Plaquenil. The more effort I put in to getting well the better I feel.

    Sally

    • mandy95
      mandy95 sally83545

      Posted

      Hi Sally,

      How long have you been taking the Plaquenil? And what dosage are you on? Do you also experience problems with reading while on the medication?

      Thx Mandy x

  • christine26761
    christine26761 mandy95

    Posted

    Absolutely Mandy,  mine did..be blessed, just get flare ups now, have had it for about 23  years ...be blessed..:-) xxx
  • sally83545
    sally83545 mandy95

    Posted

    Mandy,

    I started taking 400mgs of Plaquenil once a day in August of 2014. I have learned to split the dosage into 200mgs in the AM and 200mgs in PM because the side effects are less harsh that way. It had an immediate effect on the terrible pain in between my shoulder blades and the nerve pain in my legs what relief! Over the months I have noticed more improvement in my SS symptoms.  Any issues I have had with my eyes are from SS symptoms. If I look at something too long without blinking often (books,TV, computer) my eyes become dry and irratated. The dryer my eyes become the more blurry my vision gets. I simply cannot stare at anything too long without using moisturizing drops or resting my eyes. While driving or outside I have taken to wearing a type of sunglasses that fits over my prescription glasses. They have made a world of difference with the glare and headaches I was getting from the sunlight. I hear these are also very helpful when used while working on a computer. 

    Sally

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