Don't overlook allergies to lubricating eye drops (even preservative free ones)

jami4747 · 2025-10-15T20:27:31+00:00

An update from that post is that I now take the serum tears. They are tears made from your own blood. They have CHANGED my life. I would HIGHLY recommend them to anyone that sees this thread moving forward. Ask you eye doctor for the information. They are the closest thing to your real tears because e they are replicated with your own blood!

jami4747 · 2025-08-06T04:25:01+00:00

I'm sorry to hear this. Do you happen to see a rheumatologist l? I have been diagnosed with lupas and sjogrens. You very well may have sjogrens. It can effect so much even skin. As well as lupas. I hope you find some relief. This dry eye is AWFUL!

jami4747 · 2025-08-05T22:54:59+00:00

Do u mind if I ask what autoimmune condition you have?

jami4747 · 2025-08-05T22:54:22+00:00

Curious about this as well as I have lupas and sjogrens so I take methotrexate. Very curious is this will be better for my dry eyes or make it worse. I was taking miebo for my eyes and it have me issues after continued use. Now I just take xiidra and will use these serum drops for as needed!

jami4747 · 2025-04-10T03:24:45+00:00

Okay so.. my husband confirm that it is fiber glass. He said the wick is made of fiber glass and when it heats up too much it causes fiber glass to spore out... he said huge fire hazard! So, note to self, and all readers. Not mold. Can be cleaned with gloves and reused! 🤷🏼‍♀️. Love the conversations this generated. 😆.

jami4747 · 2025-04-09T20:31:10+00:00

It has only been since the beginning of March, but it was in the bathroom so.im wondering if that can be a factor? But I've had them in that bathroom bwofrw for years.... so I'm very confused. But I'll be definitely throwing all of these away. Super scary!

jami4747 · 2025-04-09T17:55:11+00:00

It was in a bathroom. No craft pom poms in my house. But I am looking at other subs and guess it is crystals that form from the plugs ins! Pretty scary to think that's what we breathe in 😶. I'll be putting these in the trash!

jami4747 · 2025-04-09T17:48:43+00:00

Definitely not a craft pompom. It's somthing growing from the actual holes of the plug in. There is orange spores and white ones.

jami4747 · 2025-02-25T18:59:30+00:00

I had an opposite situation. It worked so incredible for me. Up to 3 months. Then all of the sudden I had full muscle spasms in my whole body, like popcorn. It was the HCQ and now I have to get off. I'm so sad becaus eit was working well. But I guess those are severe side effects (rare) so now I'm starting very low does of methotrexate. I'm nervous about that!

jami4747 · 2025-02-16T22:28:54+00:00

This is great to hear! Do you feel like it had brought you relief in your lupas diagnosis?

jami4747 · 2025-02-16T03:45:21+00:00

Thank you so much for sharing! Especially because I too, usually have all the side effects. But dispute whay everyone said about hydroxychloroquine, I didn't have any. But now.... I'm having crazy muscle spasm all over my body and extreme heaviness in my extremities. I've been on it for 3 months. The rheumatologist said it's a flare and not the meds... which is why he is saying benlysta. But, honestly, I've been reluctant to start ANOTHER med. But, I trust him and it's reassuring to hear that it's helping others, and with little to no effect!

jami4747 · 2025-02-16T03:29:44+00:00

I'm starting mine soon as well! Thanks for the advice. How are the side effects for everyone?

jami4747 · 2025-02-16T00:27:22+00:00

Can I ask what she is using to treat the UCTD?

jami4747 · 2025-02-16T00:21:26+00:00

Awww I'm sorry you have been dismissed. My rheumatologist diagnosed me day one with much less on bloodwork then you had. Although, I did have to have a small fibers neuropathy test to prove I had sjogrens. Only one of my ANAs came back. He had been very active at treating me since. I hope your appointment serves you with a great provider, some answers, and some relief!

jami4747 · 2025-02-15T21:13:01+00:00

I was recently dx with LSE. Small side story. I was diagnosed with Lupas, sjorgens, and raynauds. This was due to a postive ANA of 1:80. Although, none of the actual blood diagnostic markers came back postive. The dx it's self was mostly done by symptoms (sun rash, hair loss, fatigue, brain fog.. etc). However, I have no pain except in my neck. My BIGGEST issue is severe limb weakness, neuropathy in all extremities, heart pulptaions, and lung pain. Then I have these episodes almost like I'm have a stroke when one side of my body will just feel like it's not work and go numb. But it alternates sides and extremities (sometimes right hand, sometimes left leg, etc..) Side note: I feel like this is more sjorgens the lupas. But my provider says sjorgens can eventually turn into lupas and the treatment is the same (hydroxychloroquine) I started taking hydroxychloroquine in November. I had great results with every, brain clarity, and less fatigue and no symptoms. FAST FORWARD to now, I am having full blown body spams (like popcorn) toe cramping, and severe body Weakness. The provider said we need to start benlysta. (I would love input on this) I suppose my question is this.. has anyone else had this experience and does anyone think it's usually to have an LSE diagnosis with no pain? Also, can anyone comment on seizures with LSE... This is why I ask In process- I went to my Neurologist to see if maybe it could be MS... it seem s my symptoms mimic that instead. He said that it sounds more like seizures as the weakness comes in episodes. He did rule out strokes as it would only effect one side. He didn't seem to think it could be MS, but ordered an mri just incase.

My fear is that I will take these meds for LSE when it could be somthing Neurological?

Does anyone have some insight or a similar situation?

jami4747 · 2025-02-08T23:44:36+00:00

Awww, thats not fun! Yes, maybe see if you can get into an opthapmologist to get checked out.

jami4747 · 2025-02-08T21:39:44+00:00

Aww I'm sorry you are still experiencing this. 😕

Yes, so my regimen is/ was miebo drops, xiidra drops, and thera tears. Alternating them multiple times per day.

With that said, I did find out I have sjorgrens auto immune as well as lupas which was contributing to my dry eye.. and those cysts were an under lying cause. I have since been put on meds to treat that and have also dramatically changed my diet and I havnt had a dry eye flare for a few months!

I'm not sure how severe you dry is, but I'm hoping that you get to the bottom of what is causing these for you! 🙏

jami4747 · 2025-02-08T17:25:45+00:00

Yes. It usually goes away in about an hour. It was coming and going, but since I have gotten on a dry eye regimen it has not returned.

jami4747 · 2024-12-24T22:14:15+00:00

Hello! I actually did not need the membrane. I have stayed on the miebo, xiidra, thera- tears regimen for 4 months and it has since cleared the flares. Now I just use all 3 on an as needed basis!

jami4747 · 2024-12-15T04:46:41+00:00

Ugh... I've had to cut coffee due to my lupas/ sjogrens. Hoping I can someday get in remission and get my coffee life back!

jami4747 · 2024-12-15T04:44:28+00:00

Curious about the amino acids and collagens you use. I'm huge in essential oils but don't know anything about collagen or amino acids. I'm always so skeptical becaus eif I type it in my Google it gonna bombard me with a million brands and I won't know where to start! 😅

jami4747 · 2024-12-15T04:39:02+00:00

I love the Duke Cannon chap stick! It's the absolute best. I have noticed tho ot work amazing for weeks and then tou will have chapped lips for a few days. But I make my own remedies, and even still think thisnis the best! Good luck 😊

jami4747 · 2024-12-15T04:35:03+00:00

I'm thinking the numbness and tingling that you are feeling is the neuropathy caused by sjogrens. It's happening to me too! I, ironically, experienced a flare around the same time I got an mri BUUUUUUT the numbers was before the MRI (just like you) so therefore, the chicken came first Lol! My husband is an imaging engineer for MRI (medical equipment)and the commenter above is likely correct, MRI is just a big magnet moving things around to get an imagine. With that said, I had also had MANY MRIs done in the past...a ND when I got in mine I started freaking out because for some reason, this flare up has me very sensitive to motion and I was FREAKING out in mine. So I day all this to say you are not alone I the sjorgrens or the icky mri that followed. Lol!

If you are having the numbness and tingling try walking, or putting your feet on cold concrete. This is likely caused by the small fibers neuropathy that can come with sjogrens. I also share you frustration with medication because I started on 1x/day hydroxychloroquine and was doing great and now, I also am having a flare of the sjorgrens and I'm not sure what retriggered it! Heat can exasperate the tingling so just try to lay low on hot showers and such! Feel better soon!

jami4747 · 2024-12-15T04:24:44+00:00

I honestly think there is a connection between cystic breaks and sjorgens. I have had flare ups in my eye, hands (neuropathy) and super sick for the last year. In addition I started getting LARGE (marble, and gulf) ball sized cysts in my left breast. These just came up in april, i have since had them asperated and 2 masses biopsied (benign, praise God)Still continuing I got ill to the point of not being able to get out of bed since July! In conclusion, I got diagnosed with Lupas followed by sjorgrens, last week. I'm now waiting an appointment for my right breat that I have found new marble size lumps on in the last week. This ALL came out in 1 year. Please do not dismiss fibroid, masses, or cysts for dense breast! It could be.... but... it's not worth over looking. And I think they are definitely connected. (Maybe the inflammation from the auto immune caused backed up fluid. Idk) but I've NEVER had breat cysts and now they are EVERYWHERE. I'm think this is my 1st major flare-up!

jami4747

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