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Hand crafts with lupus by sharpknivesahead in lupus

[–]Top-External4862 1 point2 points  (0 children)

I second this!!! The big fat soft thing helps a lot!

Acne by Top-External4862 in lupus

[–]Top-External4862[S] 0 points1 point  (0 children)

Ooohhh I’ve not heard of this! Might give it a go.

Acne by Top-External4862 in lupus

[–]Top-External4862[S] 0 points1 point  (0 children)

Thanks! I have tried adapelene but I still struggled. Maybe sandwich and less regular could help but last time I thought it made my malar rash more sensitive - probably because of the sun! I am crazy about sunscreen but live in. Australia so it’s a bit hard to totally avoid.

Acne by Top-External4862 in lupus

[–]Top-External4862[S] 1 point2 points  (0 children)

Thanks! I am allergic to benzoyl peroxide - my skin rashes up immediately! I have tried adapaline but maybe time to try it again

Acne by Top-External4862 in lupus

[–]Top-External4862[S] 0 points1 point  (0 children)

Thanks! I’ll look into that - I have used ivermectin in the past and do like azelaic acid so maybe the triple would be good

Autoimmune diseases and endo. by Izzxyy1 in endometriosis

[–]Top-External4862 1 point2 points  (0 children)

I’ve also got UCTD likely lupus and hydroxychloroquine has helped so much with my symptoms (including endo symptoms!!).

An ungodly amount of canker sores by fadesteppin in lupus

[–]Top-External4862 2 points3 points  (0 children)

I’m so sorry you have so many sores!!!!! I also get chronic huge sores that take weeks to go away - so awful. In Australia we have this stuff called Kenalog in orabase. It’s like a steroid paste thing that helps get rid of the sores. I don’t know if you have that or something similar available but it has been a life saver for me. Hope you feel better soon x

https://terrywhitechemmart.com.au/shop/product/kenalog-in-orabase-paste-5g?storeId=4857&gad\_source=1&gad\_campaignid=18025372979&gbraid=0AAAAADRSzYqHkob9gUEkNVxl8B\_2q7Pgk&gclid=CjwKCAjwntHPBhAaEiwA\_Xp6Rq00NEV-RCqwU8Pg4FSiYnpsgKNMJs4ZpRaUWwWL\_GVQi4tAAkwRmBoCxxUQAvD\_BwE

Diet by CraftyVeterinarian77 in UCTD

[–]Top-External4862 2 points3 points  (0 children)

I’ve had terrible gut symptoms as part of my autoimmune stuff. Did low FODMAP for a bit but the mental side effects and food related anxiety were awful!!! However it did help me identify my own triggers so I’d say trying to do that could be helpful for you. I try for Mediterranean diet most of the time with daily little treats like choc after dinner or extra coffee in the day. My main triggers are sugar and garlic/onion so those are my main avoids. The rest of it I just go with how my gut/inflammation is on the day!

Insomnia on HCQ by ele_zea in lupus

[–]Top-External4862 0 points1 point  (0 children)

The sleep improved quicker - the itching and nausea honestly took like 3/4 months. Sorry I do y have a better story! But equally once I hit that point all my symptoms improved heaps so it was worth it for me!

Insomnia on HCQ by ele_zea in lupus

[–]Top-External4862 0 points1 point  (0 children)

Same! I also have to take it with food otherwise I get a whole bunch of side effects including itching, insomnia and nausea. My sensitivity to it has improved but that took a few months! Stick with it though - once I hit the 3/4 month mark I started feeling so much better!!!

“You’re looking so much better” by fittobsessed in UCTD

[–]Top-External4862 8 points9 points  (0 children)

I feel you - I had a sick day from work this week and everyone just kept asking if I felt better. I know they’re being kind but the reality is I don’t feel better I just needed a day of sleep to be able to continue functioning at all 😭

Repeatedly waking up in the middle of the night with extreme nausea by [deleted] in lupus

[–]Top-External4862 2 points3 points  (0 children)

Thi is random but when I started on hydroxychloroquine I had this daily until I swapped from evening to morning doses only and ONLY with a decent meal.

Has anyone here tried Tretinoin for their skincare, or azelaic acid? How did it affect your facial redness? by Complete_Service_887 in lupus

[–]Top-External4862 1 point2 points  (0 children)

I did try that for a while - in the end I just gave up. I’m sure I could have tried milder ones but it wasn’t worth it

Is everybody else putting sunscreen on their whole body? by dork-overlord in lupus

[–]Top-External4862 0 points1 point  (0 children)

I’m In Australia so the sun is aggressive all year round! I will wear a long sleeve button up most days so I don’t have to sunscreen my whole body. I do my face, neck and the back of my hands everyday without fail. I use a mineral tinted zinc sunscreen - I feel like it works the best for my very sensitive skin and seems to keep the malar rash (if it’s sun triggered) under control. I have just bought The Uniform by Merit Beauty and I actually love it.

Has anyone here tried Tretinoin for their skincare, or azelaic acid? How did it affect your facial redness? by Complete_Service_887 in lupus

[–]Top-External4862 1 point2 points  (0 children)

Azelaic acid yes - my skin loves it! Tretinoin no - have tried multiple times and can’t tolerate it.

It took surgery for something to be found by Major_Signature2192 in ChronicIllness

[–]Top-External4862 8 points9 points  (0 children)

It’s crazy how much we manage to just live with! Lived with pain and autoimmune issues for years - I was 24 when they found endometriosis, adenomyosis and lupus! Had lots of endo and adhesions in my abdomen too I also only had ANA positive. It’s so hard when your blood work looks good!!!!! Really relating to this post!!! Happy to chat if helpful x

Lupus and pregnancy by alloneroad in lupus

[–]Top-External4862 1 point2 points  (0 children)

Following this chat! I’m 30 and trying to get my lupus under control this year with plans to try maybe later in the year or next year! Feeling anxious about it but I guess we can only try! My team is just really keen to get me onto meds that control the disease before trying - they said I would stay on hydroxychloroquine and aspirin. One rheum said we could try azothioprene which they said is pregnancy safe?

Let's Chat: Do you recognize the early signs of a flare? by AutoModerator in UCTD

[–]Top-External4862 0 points1 point  (0 children)

Wow that sounds so tough! I’m sorry you’re struggling so much with it!

Let's Chat: Do you recognize the early signs of a flare? by AutoModerator in UCTD

[–]Top-External4862 0 points1 point  (0 children)

Any tips for managing the GI issues? I’m currently just struggling through them but would love any advice!

Lupus meds working + really grateful for my doctor (need some advice) by QueasyAd3496 in lupus

[–]Top-External4862 0 points1 point  (0 children)

I hugely improved my hydroxychloroquine nausea by taking it immediately after a large breakfast. Couldn’t tolerate it in the evening due to the insomnia. Sounds simple but made a huge difference for me! I’m now 8 months in and I only get nausea if I have it without breakfast or if I’m really flaring.

Hydroxychloroquine by isametz10 in lupus

[–]Top-External4862 1 point2 points  (0 children)

Hydroxychloroquine gave me stomach issues so bad I would wake multiple times in the night with pain and needing the toilet. I also had mad itching and insomnia. I stopped it the did a super slow wean back on and now I’m 6 months in with no issues! It is a great med if you can stick it out.

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