u/Apprehensive-Storm95

I am immunocompromised so VERY grateful that these vaccines exist. I’ve just been unwell so don’t want my flu vaccine tomorrow as I want to recover. Which means I’ll end up with flu + covid vaccine at the same time.

I’m very vaccine reactive - very everything reactive actually. So thinking I’ll dose myself up with anti sickness tablets and paracetamol. What does everyone think? Anything else?

I have a diagnosis of RA and an overlap syndrome connective tissue disease.

I’ve been on various meds and am taking a new biologic now, though constantly catching bugs.

I’m starting to get a little depressed, if I’m honest.

What can I do to take charge of myself on top of all of that?

Has anything helped you lifestyle wise?

I have quit ultra processed food 90% of the time, I go cold water swimming 3/4 times a week, do gentle yoga every other day, get at least 8/9 hours of sleep. I walk my dog maybe 8-10k steps each day. I think those things do help a little.

What has helped you all?

I am in my 40s and have an autoimmune disease and am immunocompromised. Before I start a new JAK Inhibitor, my doctor told me I needed to get shingles and pneumonia vaccines.

When I went for my appointment the nurse tried to discourage me from getting them both at once, but I figured: get all the arm pain and grotty feeling over and done with in one go.

I didn’t realise I’d need a second shingles dose! And I had no clue I’d feel this awful. Fever, chills, muscle spasm type things, nausea, headache… when will it end?!? And in two months, I’ll have to do it again?!

I wonder if being immunocompromised has made it worse? I am also really sensitive to any medication.

I also need a Covid booster and the flu vaccine soon. Now also dreading those! (Hated the Covid vaccine last time.)

I have MCTD and secondary Sjogren’s. Mostly this comes out as dry mouth and it’s far worse at night.

I have started using those sticky xylitol mints but when they dissolve, it’s like the dryness is worse than ever!

What helps you all?

Will it improve with medication? I’m currently on no meds after reactions, but about to go on a new one.

I have failed quite a lot of meds! Methotrexate, hydroxychloroquine, and ritixumab. So my rheumatologist is going to apply for funding to put me on filgotinib (I am in the uk).

Anyone got any experiences on it? From what I’ve read, I feel optimistic! But not sure if I’ll get the funding or not.

I have MCTD and I had ritixumab about a month ago and then a serum sickness reaction to it that I’m still recovering from. And my immune system is basically zero. Last week, I had too many lovely things on so I pushed through and did them because I still wanted to enjoy my life. And it was a heatwave, which I found hard to push through. Today, I feel absolutely dreadful. Like I’m in spoon debt (if you know the spoon theory!).

So I’m wondering: what things do you do to feel “well”? I’m too exhausted to do anything physical, and my face is swollen, getting another eye stye, constant headache.

I want to be able to control one variable!

I’d love to hear any small thing!

I’m 46 and take HRT. I have MCTD rather than straightforward lupus, and I think my hormonal fluctuations of perimenopause / HRT awakened it or spiked it. It was already there, but the hormonal rollercoaster of the second half of my cycle seems to trigger flares.

Anyone else feel this way? I am tempted to see a specialist who has an interest in autoimmune and HRT or menopause / peri, but I’m in the UK and would have to spend money! (I’m used to the nice free NHS!) and not sure if they’ll tell me much anyway.

Would love to hear other experiences!

[PubQ] 

I am deep into the first draft of books 4 and 5.

I did not get anywhere with 1, 2 and 3. Book 1 got lots of requests for full, two r&rs, then it disappeared. Didn’t submit book 2 as I didn’t believe in it. Book 3 languished in the query trenches. I got mostly silence, some form rejections and three personalised “no thank you”s.

After being sad, I decided to get obsessive about finding out where I went wrong by reading a lot on craft and listening to a lot of podcasts etc and launched into writing book 4, a different genre to the ones I have done before. It’s a magical realism / contemporary fiction blend.

I am more confident about this book than the others but - really - who knows!! I was confident about book 1 and 3 at different points too!

At the same time, I have also been working away at a middle grade novel.

Both might be ready at about the same time.

What would you do in this scenario? Hold one back while querying the other? Query them both to the different agents / agencies as they’re likely to appeal to different agents anyway? But - if everything was to go super well - you can’t have two agents, right?!

I posted earlier about how my ritixumab infusion may have caused a reaction 12 days later. I’ve got hives all over my body.

I just spoke to my rheumatologist and she really wants my body to give it another go (this was my first of two doses in two weeks) so she’s putting me on 20mg of steroids for five days, tapering down to 10ng and if the hives are gone, then getting the second infusion.

I can’t stop crying at the thought! I hate steroids so much! They make me so very depressed. I can’t feel joy on them.

Does anyone else feel like this on steroids? What helps?

The other thing that is making me spiral is that she said ritixumab is the only thing she has to try - she has no other drug options because of my complicated diagnosis. That’s fine, if it works fine. But what if it doesn’t?

Anyway, anyone who is able to cope with steroids please tell me how!

I took my first dose of ritixumab 12 days ago. I have the second on Wednesday.

This morning, I woke up with hives all over my legs and arms.

I have called rheumatology (I’m in the uk and with the NHS) but they haven’t got back to me.

I can’t think what else might have caused this!

Did this delayed reaction happen to anyone else? Did you have to stop the treatment?

I have MCTD and RA with some other features of other autoimmunes.

(I can’t figure out how to attach a picture so I may edit this to add one!)

I have a diagnosis of MCTD and I didn’t get on with methotrexate (horrible mood side effects) or hydroxychloroquine (allergy), so I have a ritixumab infusion next week. I’m a bit scared! I accidentally read about all the horrible side effects including chance of a brain infection. Ahh! Wish I didn’t read that!

Can anyone tell me their experiences? But ones that don’t scare me?!

I’m really drug-sensitive and I hate steroids so I’m dreading all of it, especially the steroids part.

How did the infusion part go? Did it help you? Did you have to get it every six months or longer remission if it worked?

Hi everyone, I’ve sent my query (under another title also) to about 50 agents and have had 10 rejections so far. One properly personalised, one vaguely personalised. No partial or full requests.

I’m in the UK and this is how I was taught to do queries when I did a writing course. But something isn’t landing - perhaps this, perhaps the book!

Any feedback would be incredibly gratefully received!!

Dear [Agent],

I am writing to seek representation for my debut novel, How I Learned to Hate My Sister, a darkly comic exploration of sisterhood, obsession and female performance in the age of social media.

The novel will appeal to those drawn to the dark, character-driven, midlife reckoning of Big Swiss by Jean Beagin; and to readers who enjoyed the comedy and emotional perception of Alison Espach’s The Wedding People, and viewers who love-to-hate Netflix’s The Secret Lives of Mormon Wives, as it interrogates the spectacle of “wholesome” femininity and influencer culture.

Elevator pitch: A frustrated housewife attempts to destroy her influencer sister’s career and reclaim the love – and the life – that was stolen from her.

How I Learned to Hate My Sister is about Aila, 43, an English semi-housewife living in Seattle with her husband, Ry, and three tween daughters. She is still in love with her ex-girlfriend, Carolina. Aila blames her estranged younger sister, Saffron, 39, now a globally famous influencer on a “wholesome” Mormon Wives reality TV show, for the derailment of her life. When Aila is abruptly banned from social media, she finds herself unable to escape Saffron’s world: her sister is suddenly everywhere. As her daughters absorb Saffron’s values, and Aila reconnects with Carolina, she attempts to get Saffron cancelled while quietly trying to resurrect the life she lost.

How I Learned to Hate My Sister is my first novel. A previous draft of it was long-listed for Farnham’s First Five Pages. In 2023, I completed Curtis Brown Creative’s six-month Write a Novel course. My fiction has been published in Mslexia, where I won a flash fiction competition. I work as a forest school teacher and as a freelance writer.

I'm submitting to you because of your interest in female-led commercial fiction and your impressive track-record! [personalised also]

Best regards,

I queried around 60 agents with my debut. That’s a lot of agents, i know, but I decided to just go for it. (It’s my third completed book, but it’s the first one I’ve submitted to agents as the first two completed manuscripts weren’t quite right.)

I started submitting about two weeks ago and I’ve had four rejections already. Three form rejections, one more personalised.

If you managed to get an agent, what was your timeline? How many rejections? How long until full requests / offer of representation? I only know people who got full manuscript requests within a week, offer of representation within two!

It’s so depressing!!! I need to distract myself but I can’t stop refreshing my emails!

I have been diagnosed with Mixed Connective Tissue Disease (previously RA) and am getting a rituximab infusion soon for the first time.

I am feeling quite scared and really want to hear stories of those who made it into periods of remission? Anyone? What worked well?

Obviously I’m hopeful that rituximab might help me get there. But I don’t know if I’ll just have to take it forever (it works for me). I’m quite drug sensitive so i don’t know!

I know there’s no cure for these autoimmune diseases - but would love to hear about your stories of periods of remission!