u/IndependentDare8420

Does anyone else have this symptom? I’ve noticed that when I breathe through my nose it often feels like the air entering my throat is icy cold and dry, even when I’m somewhere relatively warm/humid.

I presume the nose is dry and not hydrating the air so it feels cold and dry when it hits my throat.

I have eye and mouth dryness which I kind of manage, I find pilocarpine helps. But nothing helps much with this unpleasant feeling in the back of my throat when nose breathing. I feel as though people don’t complain about this, just dry eyes and mouth. Am I going crazy?? This drives me nuts because sometimes the air entering my throat seems so dry it triggers coughing fits. This means I tend to breathe through my mouth but obviously that’s not great for the mouth dryness.

Keen to know if anyone else experiences this. Is it normal for you to feel air hitting your throat when you breathe? I’ve had sjogrens for 10 years so I don’t even know what’s normal anymore.

Keen to hear from anyone who has done Tepezza / teprotumumab while there TED was inactive / in the chronic phase?

I did orbital radiation and steroids 2.5 years ago. They helped massively and stopped disease progression. But my eyes are still a bit bulgy and my face looks quite different. I also have sjogrens disease so deal with severe dryness that my proptosis, though mild, makes much worse.

I may have found a way to access tepezza for free/as part of a trial and am wondering if I should do it. Obviously I’m concerned about side effects but if it could help me I’d be keen to try it as I really don’t want to do something like decompression surgery which has its own risks.

If anyone has done Tepezza late in their disease process or post radiation / steroids please let me know your experience!!! ☺️

My immunologist prescribed prednisone for a month. He thought it might settle my dryness which he thought might be made worse by acute inflammation. Has anyone else used it?

Ive seen a false narrative out there I want to correct. The new CGT changes are NOT hurting long-term growth investments. If anything, they are probably GOOD for those who invest in shares long-term.

The old CGT system probably UNDER-compensated persons who owned shares long-term (<10 years). This is because over long term the discount you get from taxing only real value (not inflation) is greater than a blanket 50% reduction.

For example, let’s say you buy 10k in shares one year and then ten years later you sell for 20k. Now let’s say inflation ran hot during that period and accounted for 60% of the increase. Under the new system, you pay tax on the real increase in value ie 4k. Under the old system, you get a blanket 50% reduction on your 10k profit so you pay tax on 5k. In other words you are BETTER OFF under the new system. That is accurate with respect to the last 20 years and considering where inflation is now will probs be accurate for the next 20.

If OP plans to buy shares and hold them for a while (which IMO is the only sensible way to invest in the share market as a young person), then this budget is probably a net benefit to him. Different if he wanted to buy a house, renovate it, and sell it 12 months later at an inflated price, but OP wouldn’t be doing that with just 16k.

Don’t listen OP to people who say this is bad for long-term share investing; the only ones who say that don’t understand the policy.

Sincerely,

A young person who doesn’t own property but owns <$1m in IVV, ARG and some other Aus stocks and has no plans to change my investment strategy post budget.

Finally got a seronegative diagnosis! Not by lip biopsy but by a quick and non-invasive ultrasound…

After all-negative bloodwork, I asked for an ultrasound of my lacrimal (tear) and salivary glands.

The first radiologist said the saliva glands looked normal but the lacrimal glands showed severe damage consistent with sjogrens. Unfortunately, because I’ve also had Graves’ disease, that could also explain by tear gland damage, so it wasn’t a slam dunk.

I then got a second ultrasound of my saliva glands with another doctor. They said the first radiologist was wrong and that my saliva glands also clearly showed some mild damage to the saliva glands that could only realistically be explained by sjogrens. Given that a positive ultrasound is almost as specific as a lip biopsy, that confirms the diagnosis - and my immunologist is treating with immune suppression on that basis.

For anyone interested, the first ultrasound was through imed in Westmead (Australia). The second was with royal north shore hospital. I used the same referral for both places without any issues, because I felt a second opinion was a good idea.

I encourage others with seronegative disease to pursue this as a diagnostic option to avoid a biopsy. Also, if one radiologist says there isn’t any damage it’s worth getting a second opinion as my experience shows.

Already on Pilocarpine, but considering another systemic medication as I can’t stand the dryness anymore! I know these drugs don’t help everyone with that, but I’m curious to know what has helped others

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Just had a ‘normal’ salivary gland ultrasound (although my lacrimal gland showed some damage it could be from Graves’ disease). My rheumatologist is now saying I don’t have Sjogren’s despite terrible dry eyes and mouth. Do I now need to do a biopsy? My rheum said the biopsy won’t be positive probably unless there’s damage on the salivary glands on ultrasound, so no point.

Have others had normal ultrasound but positive biopsy?

What do others think? My main (and really only) symptom is bad and worsening dryness. Should I bother with systemic treatment?

Curious if anyone has tried a hydroxychloroquin a d leflunomide combination before?

According to the below double blind placebo controlled study it was first clinical trial to show clinical efficacy including an ‘unprecedented improvement in saliva output’.

But for some reason most rheumatologists don’t seem to know about this? I know it’s used by some rheums (see link below) but in general I feel most have never heard of it? But it’s literally the ONLY available treatment to show these improvements in a double blind placebo controlled study. Have others tried it??

https://www.the-rheumatologist.org/article/how-the-experts-treat-sjogrens-disease/2/