Are you having the same problems?

I relate to all you are saying. I don’t know what symptoms that I have had are worse than any other. I think the lack of tears and saliva is the worst. I started my illness with huge joint pain. I take plaquinil and was in remission until my brother died. So yes, I’m in a flare. Gonna get out of it though and so will you. I relate to your pain. It is awful.

I thankfully have never owned a voodoo doll and won’t. You made me laugh and I thank you for that. I  am sorry you are feeling so sick. Me too. It’s horrible.

I feel your pain and frustration! I am currently using EVERYTHING and still, it's a struggle to see from one moment to the next. Even though the eye doctor says my eyes are better than they were, they don't feel better or work better,  ugh.  I know all this stuff is outrageously expensive but I did come across a very reliable online pharmacy where I get some of my supplies at a fraction of the cost, maybe it can help you. it's called ReliableRxpharmacy ...I am not affiliated with them at all and don't receive a discount. I stumbled across their information on another site trying figure all this stuff out. Hang in there you are not alone. Hey, I also use a gel solution at night which helps with the morning dryness.

Hello Amkoffee,

It can seem at times that everything is coming at us.

With Bronchiectasis I'm very aware of the first sign of a respiratory tract infection and get off to the doctors asap to get antibiotics. Three weeks ago a sore throat developed into a raspy trachea so off I went to see a doctor on a Saturday afternoon. Took antibiotics for four days but with my cough getting worse, lots of wheezing and coughing I went to my regular GP. She listened to my chest and panicked. Put me straight onto continuous nebulisers and called an ambulance.

It seems what she 'heard' was a 'silent' chest. Well I thought a silent chest was a good thing except I didn't feel very 'silent' with all the high up wheezing going on. However what it actually meant was that she could hear NO air entry into my lungs at all and felt I was obstructing - meaning the upper airways were blocking off and preventing air entering the lungs. Well after five days in hospital and plenty of antibiotics and nebulisers I was almost as good as new.

Thankfully, thankfully, thankfully the infection didn't actually affect the Bronchiectasis this time, as it was all in the upper airways. I still felt bad enough but not like when the infection actually reaches the bronchiectic lungs - then it feels like a bus is driving over your chest and breathing becomes ....well I don't need to tell you!

My eyes have taken a big nosedive in the past ten months and require constant vigilance with drops and ointment. For the nine years prior, (since the onset of SjS in 2007) my eye problems were fairly inconsequential but now I do not mess with them!!! 

Hmmm a # vertebrae!! Sounds painful. I hope I never get one although with osteoporosis due to lifelong steroid use I don't like my chances. Last week I had  spinal xrays to see if I have had any silent (non symptomatic) vertebral fractures, so will find out the result next week at my Rheum appointment. Joy oh joy!

So yes, SjS does throw up slings and arrows we neither desire nor deserve but need to withstand one way or another, like all trials and tribulations......but can we just vent a little bit today? 🤣

 

I sympathise entirely with the eye problem. The vision in my left eye really is deteriorating on a daily basis now. I put up signs in my living room and stand in the same place on the other side of the room to read them every few days, so I know it's not my imagination.

I don't know how much of this is due to dryness and how much to the cataract I know is encroaching on that eye. To be fair, friends who've had cataracts tell me that when they start spreading it goes very fast. However, they also tell me that when a cataract starts obscuring the vision in one eye you see a notable change in colours - losing the blue tones in the affected eye - and I see no trace of that as yet.

It all seems pretty much academic anyway as I've been told I can never have a cataract op on either eye as it wouldn't be safe on such dry eyes. The eye surface specialist I saw a month ago sounded slightly more optimistic. She said I didn't have totally dry eyes (as her boss had said) but because of conjunctival scarring, of unknown cause, I wasn't producing any oil at all in the left eye, so couldn't maintain any slight tears I did manage to produce, which basically amounts to the same thing.

I know from my own tests that my sight in the affected eye has deteriorated in the month since I saw her, so I dread to think what it will be like when I go back for my next appointment in two months' time.

In the meantime I keep trying with the OTC Syst ane drops she suggested, but I'm not getting on with them at all in the bad eye as they only increase the constant pain and sensation of some sort of lump under my lower eyelid. I therefore tend to resort to the old Thea loz drops, using them at least six times per day. They do help a bit. I'm also using the heated eye mask she told me to get for about 15 mins every morning, to try and get the oil glands working again, though that too seems to increase the pain and discomfort in the left eye. The only thing that gives me any real relief (though without improving my sight) is washing out my eyes with those one-dose saline solution containers - also suggested by the ophtho.

Still I suppose I should be grateful as I don't have any other very serious problems. My sympathies to all who are coping with deteriorating vision as well as other conditions.