u/TA-iamanonanoniam

I have an extreme case of macromastia (I swear it used to be called gigantomastia but I digress) and a lot of health issues inc Lupus, Sjogrins and more.

Some context:

I previously got confirmed for a BR in my old city in 2020 but while I was waiting to meet the surgeon, I was placed on medication to save my life and my weight spiralled. I came off the medication last year and am finally able to lose the weight and have lost well over half of it. My GP is re-requesting funding permission, but what's niggling in my head is whether or not they're going to correctly assess my case. The main things im worried they'll overlook or outright not consider are as follows;

1. The weight of my breasts is actually making it difficult to breathe and I get significant pain in my chest and trapped nerves in my back. Sometimes the pain in my chest is so bad I have to go lay on my chest and put my breasts way up so I can breathe again;

2. The nature of my conditions is unstable and untreated (thanks nhs for the long term neglect btw but that's another story) and I'm worried that if I don't get the surgery soon, I'll reach an inevitable complication that will result in me being unable to undergo elective surgery;

3. I previously was approved and would've got it if I wasn't placed on a ton of immuno suppressants and steriods to try and get my symptoms under control and left on those for like 5 years. My weight before the medications was stable for multiple years and it's returning to baseline fairly rapidly. I'm worried that, if i have to wait another year with my weight being stable, I'll have an inevitable health concern or medication change that will result in me being unable to undergo the procedure AGAIN, and;

4. I have a very small frame (5 ft 3) and my breasts are a K- I cup when I last bought a bra, and nearly 5kgs in weight, which is incredibly substantial and also makes it even harder to reach their desired weight requirements. (Semi related; is the size of the breasts vs the height of the patient a determined category or is it a broad application?)

With all this in mind, do ICB's consider individual cases and apply the rules differently as standard, or if not, would it be possible to obtain a slight bend to the rules? Or do I have to delay any further treatment for a year after I reach the goal BMI no matter what that does to me?

Ty xo

Hi all!

TL;DR after my latest flare-up of something or other (multiple chronic illnesses) with a host of concerning symptoms, i decided to make my own symptom tracker that could actually track my symptoms well and clearly since every other one doesnt meet my needs. I'd like to eventually make it available for others in need. If you find them useless as well, have a read of my plans, and let me know what you think!

Mods, I'm not selling or advertising this thing for sale at all. I'm really just sick of not finding anything accurate, and for privacy reasons, etc, I'd like to have a physical version instead of on my phone. If I can find a way to help out others in the meantime, I'm down :) please let me know if its not allowed.

So, I've been having issues finding a non-phone long-term symptom tracker, so my incredible boyfriend and I have decided to try our hands at making our own!

I just wanted to know what people felt the ones currently for sale were missing? I dont want to base it solely off of my experience alone, but im mainly looking for insights from people who are a little more symptom-heavy and find the current options unsuitable because of it

For me, I would prefer a 'permasymptom' section so I can document long-term symptoms - fatigue, joint pain, hair loss, etc, and then an acute symptom tracker to monitor flares of symptoms. I'd also like the symptom sections to have more space for writing to add in details for specific symptoms. How many long-term symptoms do you have? Would it be useful for you to have it on every day to refill it, or maybe one at the beginning of every week?

I'd like to have the body image (probably female, I don't know many men with autoimmune disease, but i could make both if demands required it) to colour in, maybe a set of pencils for a colour code in a mini case attached to the book so they can stay together since I always lose my pens. My partner broached having one for the long-term symptoms/usual pain and one for the acute symptoms/new symptoms/flare pain. I think it could be good, but also I could just include a specific pen colour. What do you think is more convenient for you?

I'd like to have a blood test tracker page/s to monitor blood test results over time, which i get a lot of and can never keep them together enough to track. I may make a little book all on its own for blood tests, but in the same breath, i really want to have everything together so i dont forget anything. Maybe i can clip them together. Any opinions?

A pain level tracker is also a must,and a medication list page at the front of the book will be available instead of a daily medications section crammed in. Energy level tracker is a must!

Water tracker I like, activity tracker I like but all of them have huge activity sections which is a little unnecessary. Maybe a section at the front for consistent activities, i.e., work or daily jogging/gym, and then one on the daily sheet for additional activities like going to a fair or going out shopping all day? It should probably have a rest interval tracker attached to see how many breaks have been taken in case that influences pain. Let me know what you think!

I didn't really see the point in a weather tracker- does it help you at all? A stress tracker and pain scale (I'd like a modified pain scale to take into account our higher pain threshold - if anyone has any suggestions for that, please let me know) I think are great ideas. A food diary didn't really make a difference since I dont eat much, but they probably help a lot of people - would a calorie count be useful for you or not?

I'd like a bigger notes section as well, maybe a page/half a page daily to record how everything felt. Would you mind it being a two-page spread? A4 or A5?

As for the layout of the book, the design itself is kinda novel and I'm going to try testing it out, but because it's a new thing I'm coming up with i don't want to put it out just yet! I can say that overall, I want the book to be able to hold data covering a period of at least 3 months, ideally 6 months if I can make it work without being too bulky. I'd love to have all my information in one place spanning as long as possible so no doctor can make the excuse that they missed something! Haha.

Lastly, what things do you think I'm missing? I've probably missed some things that I want to include but have forgotten (thanks, brain fog 🙄) so would really appreciate hearing anything that worked for you that I haven't included, or anything I haven't thought of really. Like I said, if im able to make this a reality and I used your idea, I'd be happy to send you a copy to test/use as a thank you!

Hi all!

TL;DR after my latest flare-up with a host of concerning symptoms, i decided to make my own symptom tracker that could actually track my symptoms well and clearly. If you find them useless as well, have a read of my plans, and let me know what you think! If it goes well, I may be able to send some out for testing in my country for free- well, maybe postage haha.

Mods, I'm not selling or advertising this thing for sale at all. I'm really just sick of not finding anything accurate, and for privacy reasons, etc, I'd like to have a physical version instead of on my phone. If I can find a way to help out others in the meantime, I'm down :) please let me know if its not allowed.

So, I've been having issues finding a non-phone long-term symptom tracker, so my incredible boyfriend and I have decided to try our hands at making our own!

I just wanted to know what people felt the ones currently for sale were missing? I dont want to base it solely off of my experience alone, but im mainly looking for insights from people who are a little more symptom-heavy and find the current options unsuitable because of it

For me, I would prefer a 'permasymptom' section so I can document long-term symptoms - fatigue, joint pain, hair loss, etc, and then an acute symptom tracker to monitor flares of symptoms. I'd also like the symptom sections to have more space for writing to add in details for specific symptoms. How many long-term symptoms do you have? Would it be useful for you to have it on every day to refill it, or maybe one at the beginning of every week?

I'd like to have the body image (probably female, I don't know many men with autoimmune disease, but i could make both if demands required it) to colour in, maybe a set of pencils for a colour code in a mini case attached to the book so they can stay together since I always lose my pens. My partner broached having one for the long-term symptoms/usual pain and one for the acute symptoms/new symptoms/flare pain. I think it could be good, but also I could just include a specific pen colour. What do you think is more convenient for you?

I'd like to have a blood test tracker page/s to monitor blood test results over time, which i get a lot of and can never keep them together enough to track. I may make a little book all on its own for blood tests, but in the same breath, i really want to have everything together so i dont forget anything. Maybe i can clip them together. Any opinions?

A pain level tracker is also a must,and a medication list page at the front of the book will be available instead of a daily medications section crammed in. Energy level tracker is a must!

Water tracker I like, activity tracker I like but all of them have huge activity sections which is a little unnecessary. Maybe a section at the front for consistent activities, i.e., work or daily jogging/gym, and then one on the daily sheet for additional activities like going to a fair or going out shopping all day? It should probably have a rest interval tracker attached to see how many breaks have been taken in case that influences pain. Let me know what you think!

I didn't really see the point in a weather tracker- does it help you at all? A stress tracker and pain scale (I'd like a modified pain scale to take into account our higher pain threshold - if anyone has any suggestions for that, please let me know) I think are great ideas. A food diary didn't really make a difference since I dont eat much, but they probably help a lot of people - would a calorie count be useful for you or not?

I'd like a bigger notes section as well, maybe a page/half a page daily to record how everything felt, worries/concerns, just daily stuff. Would you mind it being a two-page spread? A4 or A5?

As for the layout of the book, the design itself is kinda novel and I'm going to try testing it out, but because it's a new thing I'm coming up with i don't want to put it out just yet! I can say that overall, I want the book to be able to hold data covering a period of at least 3 months, ideally 6 months if I can make it work without being too bulky. I'd love to have all my information in one place spanning as long as possible so no doctor can make the excuse that they missed something! Haha.

Lastly, what things do you think I'm missing? I've probably missed some things that I want to include but have forgotten (thanks, brain fog 🙄) so would really appreciate hearing anything that worked for you that I haven't included, or anything I haven't thought of really. Like I said, if im able to make this a reality and I used your idea, I'd be happy to send you a copy to test/use as a thank you!

Ive been diagnosed for a year and my last rheum didn't explain anything to me. I think im in a flare and I've had some new symptoms, including:

1. My 3rd and 4th toes on my right foot keep going numb

2. I went to hospital a few days ago for a different illness and my BP was 131/80, and today is about 125/77 (both resting)

3. my knees and neck are REALLY hurting. My neck has never hurt this much before. Also, my elbows and wrists are hurting and my muscles feel really weak

4. My fatigue has been crazy, I've barely been up in 3 days. I just always need to collapse onto any seat-like surface. I slept literally all day today

5. It feels like my asthma is triggered- if youre an asthmatic, you know that weird, wet-like, internal itch and slight pain in your chest and throat that signified an oncoming attack? I have that, except it won't go away and my breath is coming a little short/can't take a deep breath

6. Brain fog etc has got crazy worse. I was really struggling to understand and communicate with my partner the other day as well

7. Really really low mood. Ive really been working on improving mental health and have been really good, no depression relapses in nearly a year. Now it feels like I've not done any work. SH urges, low motivation, the lot, and deteriorating pretty rapidly. Is this a lupus thing?

8. Mad hair loss, and the first ever UV activated rash all over my scalp that improved today after being away from sunlight for 3 days and there's suddenly no irritation. Hair loss is still coming out by the handful though.

These are just a couple, but the worse ones. Ive actually slightly improved believe it or not. What can I do to ease these symptoms? How do I know when I should go A&E or is it not really worth it for flares? I'm only on HCQ which doesn't do much evidently. Thanks!

Im in a really bad flare rn and have been for a little while. Ive been suffering from hair loss and its so fkn ITCHY. My whole scalp is itching terribly, almost all over, all the time. There's a couple of small cuts all over my head, but there's big red patches and flaking. Hair loss is diffuse all over my head and at the front of my hairline, but is it meant to itch so bad? Or is that not normal lupus hairloss?? Stuff online is saying there's two types?

I tried anti itch shampoo and it just itched immediately afterwards. I'm currently slapping anti itch cream everywhere and praying bc I know I can't itch it

I am waiting for a dermatologist and my rheum can't see me till next year, and my GP is about a month out so I'm stuck googling answers for now 😔

I have Sjogrins syndrome, which has already led to rapid decay of two previously healthy teeth that i had to get fixed privately. Since then. Ive watched decay grow on my back molars and have been trying everything to slow it down.

I moved 200 miles away from my last dentist and there's no dentists within the nearest 3 towns taking NHS patients for at least 8 months. I cant afford private dentistry anymore and I can't get a credit card or anything to pay.

I need to see a dentist to manage the condition, get any prescriptions for stronger toothpaste etc, but how am I gonna do that? I also can't drive and public transport is p much a nono.

Is there a way i can make them take me on, or get funding or help with private dental care costs?

Sorry that I've been making a ton of posts on here. Ive been diagnosed just over a year and didn't know there were any support groups (i dont have social media except reddit) and I have a million questions that I've been wanting insight for from people who have the same issues as me.

TL;DR- my hair has gone from being my butt length pride to a holey, matted, shedding, frizzy shame that is making me more and more embarrassed to go outside, and it's spread to my eyebrow and one eye. My questions are at the bottom of the post!

My question today is about hair loss. I'm pretty sure i was a missed case of childhood lupus since all my issues inc hair loss have been present since childhood, but in my 20's it's been the worst ever. My hair used to be fairly curly/wavy and really, really thick. I have it long down to my butt and I've always loved it. Occasionally I cut it to mid back and get wolfcut/shag layers cut in when it got too thick.

The past 5 years gove or take, my hair has been really thinning. When I wet it, I can hold it all within my forefinger and thumb which is crazy to me. Its gone crazy brittle, is snapping, and is falling out by the fistful as well as getting insanely tangled, it matts in one day due to hairs lost even though the hairs are also falling out all over me, the floor, and wherever I am. It's also started to go really grey (is that a lupus thing or just a genetics thing?)

Ive done the hair test and the loss is significant.

It's normally diffuse and only on my scalp, but so much has been lost that its started to get patchy (not completely bald areas, but some are noticeably thinner) and my hairline has started receding and looking see through with a ton of baby hairs. I've even started losing my right eyebrow, and some eyelashes on my left eye.

Ive also been getting an insanely itchy scalp, dandruff, etc which is also new to me. My hair texture is the worst it's ever been, too. It's dry no matter what I do, it's flat, it doesn't curl at all except maybe a few at the end of my hair, and it frizzes despite anti frizz conditioner, conditioning masks, hair oil masks, and cold water curly hair washing techniques.

A few months after I first started HCQ, my hair started growing back and I had tons of little baby hairs all over my head. I was so happy!! I also had barely any hair loss which is actually my norm, I used to lose less than a small handful a day which isn't much considering how long my hair is. Now I pull out clumps.

I do everything I can. I keep my hair up most of the time in protective styles, I put an oil mix on my hair of rosemary oil, black castor oil, argon oil and coconut oil on weekly, and only wash my hair once a week. I use gel, I cold blow dry and cold wash, use rice water, use soft cotton t shirts to dry it and don't rub it. Everything I can possibly do, and it's still falling out and still not curling, and it's the worst it's ever been.

What's your hair horror story? What did you do to manage it/fix it/grow it back? Does the texture/thickness/curl ever come back, or is this my new forever?

At this point, I'm thinking I should just shave it all off and buy wigs. If you've done the same, can you recommend any cheap-ish realistic ones (preferably UK?)

Wtf do i do about my eyebrow?!?! Shave that too??

Thanks for listening. I have no family who care, and no friends because of this illness, so its nice to hear from people who understand 😔💔🥀

I just bought one yesterday with the generic boxes in it from amazon, but the pain section is so small that I filled the symptoms section, the notes section, the exercise section, and the page margins with notes and symptoms on a medium/bad day for me 💀

Can anyone recommend one that has a much bigger pain section/note section and preferably doesn't only last for 30 days?

TL;DR- a lot of Lupus symptoms I have aside the major ones haven't cleared up after over a year on Hydroxychloriquine, independent of flare-ups. Does this mean its not working well? How will I know if it is? Has this happened to anyone else, and what were the next steps for you in your treatment if any were needed?

I got diagnosed with Lupus and Sjogrins last year and have been on Hydroxychloriquine since May 2025.

I noticed it improved the worst of my issues, like the pain down my spine that felt like my spine was falling out, or the weakness in my muscles that made it hard to stand or hold anything, or the crazy, sleep-for-days fatigue.

However, I've been tracking my symptoms closely and I've noticed a lot of symptoms I have haven't really cleared up at all- the mouth ulcers/sores, hair loss, joint pain, and drowsiness that feels like i can't fully wake up and I spend a large majority of those days in bed going in and out of consciousness are still present. I also still have a lot of bloating, but i think it may actually be inflammation.

The sores manifest as red patches (seperate from actual ulcers which I get frequently) on my tongue, gums, cheeks etc. I tried to ask my rheum if they were both due Lupus but basically got a 'hmmm' in response, so I'm assuming they are.

The hair loss actually cleared up for a few months but has come back. I'm pretty sure joint pain is always going to be present lmao, so I wasn't expecting it to clear that up. I still get random days where it's particularly bad or sore and I need extra help moving etc.

The drowsiness/fatigue is easily the worst one. It actively limits my ability to seek work, keep appointments, and even once I manage to wake up, I'm brain-foggy, drowsy, and confused, so the whole day is wasted.

I still get flares of higher fatigue, joint and muscle pain, headaches, and inflammation if I've overworked myself, but the problem symptoms either persist like the hair loss and sores, but the joint pain randomly spikes from it's base level and the drowsiness occurs totally randomly. I've been trying to track it, but there is no pattern.

I spoke to my rheum, but she didn't want to hear it. As soon as she heard that Hydroxychloriquine had helped with some symptoms, she didn't care and basically kicked me out of her office telling me to go to my GP for 'small things'. I'm also autistic, so I struggle a lot to advocate for myself or understand my symptoms well or clearly.

Sorry if all those details were unnecessary. The questions i have are as follows;

1. if these symptoms don't clear up, does that mean the treatment isn't working?

2. How will I know- is there some kind of test I can ask for?

3. Did your symptoms totally clear up with Hydroxychloriquine? If not, did you take it to your rheum/find a good website, and if so, what was the advice given?

4. What was the next step in your treatment?

I'm trying to get a new rheum and would like to pursue further treatment if it's needed, but none of the support websites cover this stuff and in my country doctors LOVE to brush you off if you don't know exactly what you need (and sometimes even when you do) so I'd like a little bit of a knowledge base for the next one.

I have CSU type IIb and Angioedema and have since i was 14. I was on Ciclosporin for around 8 months but eventually the side effects were verging on severe, so they took me off and now want to start me on Xolair.

I'm REALLY anxious about starting and have put it off twice already. Ive tried so many medications before; H1 and H2 antihistamines, famotidone, hydroxychloriquine, montelukast etc didn't work for me at all.

No antihistamines had any effect, and I had really bad reactions to the famotidine and montelukast and had to stop in less than 2 weeks :( I was on steriods for 5 years to cope with the anaphylaxis and swelling, on a really high dose, but thanks to Ciclosporin I managed to come off of steriods and have been banned from starting again (although thankfully my bones were fine). I'm also finally starting to lose all the weight I gained from antihistamines and steriods which is great because it destroyed my confidence and I put on some 80-90lbs over that time. I need to continue losing weight to qualify for a necessary surgery for another condition, so I'm REALLY worried about the liklihood of weight gain bc I almost ALWAYS gain weight on meds! I didnt start losing until I stopped the Ciclosporin as well, but at least i didn't gain more while on it.

When i first started Ciclo, they wanted to put me on Xolair but I pushed for an immunosuppressant. They did a rare test and found that i was 83% immune response and so wouldn't react to antihistamines and agreed to Ciclosporin, but now they've gone back on their view and think I should try Xolair.

I'm against putting needless drugs in my system if I think they won't have an effect. I'm very sensitive to medication and struggle to find anything that doesn't cause bad or serious side effects. I wasnt even able to be on any BC, SSRI or anxiety meds bc i had such bad reactions inc weight gain. I have other autoimmune illnesses too (SLE and Sjogrins) and have no idea about how these will react with the medications

Honestly, my Dr's have barely covered the medication with me or the side effects- when I mention my weight for the surgery they just brush me off like im being shallow and say the medicine won't make me gain or stop me losing (they did that abt ciclo and then my GP had a look and weight gain and difficulty losing weight are both side effects) so I don't have any trust in them and do my own research. They also want me to start antihistamines again alongside Xolair which I absolutely will not be doing (they said the same about antihistamines w weight as well). I will be asking them again but I only have a couple of appointments over the phone bc theyre far away and v difficult to get ahold of, and I just don't trust they'll be honest.

Anyway, I just want to know if anyone has had any bad side effects (esp weight related) and if anyone else has experienced weight gain, especially if you are sensitive to medications too! Thanks 😭