Stills Disease, Treatment and now Covid

JessicaLizzie

Hi

Just wondering if anybody has had any of these treatments for covid? I've recently been diagnosed with adult onset stills disease, been on high dose oral steroids for about 2 months now, last week had 3 pulse IV infusions of steroids and was about to start methotrexate this week when I've now tested positive for covid (did a lateral flow this morning when waking with a sore throat and feeling chesty). Fortunately my GP was due to call me today and so I told her, and now waiting to hear back from the NHS within 24 hours about covid treatment.

I've read there's tablets or IV infusions (really hoping not to have the infusions because I'm currently reliant on a wheelchair and patient transport ambulance to get anywhere with the state of my joints, and it's so painful going on the ambulance). I haven't heard of anybody having the treatment or know how it may impact my stills disease etc so just seeing if anybody else on here has any experience? I'm guessing once rheumatology know, they will postpone the methotrexate again which I understand but is equally gutting as I desperately just want to get better.

Every day feels like groundhog day lying here staring at the same 4 walls, living on my own with just the PA coming in at tea time. I've gone from a relatively active 29 year old to a life and body I only ever imagined having in my 80s 😔

Thank you

Jess

frogmorton

Oh Gosh Jess that's just so unlucky😕

I was literally thinking about you today and wondering how you are doing.

Sorry I can't help I haven't had COVID yet (to the best of my knowledge of course) this could not have been worse timing for you.

A lot of people are coping with it without any additional help I hope for you that you are one of those.

Take very good care of yourself

Toni xx

stickywicket

Oh @JessicaLizzie , what next for you?!

There are several ways of dealing with covid now and it seems to depend on where you live and your situation.

Of course you just want to get better. And you will. This is just a setback.

I send some of my very rare ones ((( )))

JessicaLizzie

Hi @frogmorton and @stickywicket you just can't make up the type of luck I have can you?!

I'm still waiting on a call re treatment. Giving it a couple of hours and then will chase it up. Feeling a lot worse today so I'm hoping I do get some sort of treatment. Rheumatology have called and they're delaying the methotrexate until I've recovered from covid. Had a good cry about it and now need to remind myself like you say it's just one setback, this isn't forever and it will get better.

stickywicket

To be honest, however bad your feel - and I'm sure you feel awful - you're better off without the meth right now and would have had to stop it if you'd already started it.

I hope you've got your call but hats off to you for planning to sort out your own admin if they didn't get back. It shouldn't be like this but sometimes is.

Take care.

frogmorton

Good Morning Jess @JessicaLizzie

How are you feeling today? I hope no worse and soon maybe a little better at least covid-wise🤞

Stickywicket is totally right they would have suggested you stop your MTX anyway if you had started it so better to delay it.

Take care now and remember we are always here.

Toni x

JessicaLizzie

Thank you both of you. I had the nMab drip infusion yesterday and now have them calling me every day to check my obs (given me things to record my obs twice a day). I guess I am grateful that at least I've got covid before starting the methotrexate, though it's just frustrating it means it is delayed. But like you both say, they'd have had to stop it anyway. Touch wood all will work out in the end, and hopefully if anybody else comes on here in a similar situation then I can help them having been through it myself 🙂

stickywicket

I'm thinking of you and sending positive vibes your way

frogmorton

I'm so glad you've had the drip Jess @JessicaLizzie

Hopefully you will make a swift recovery from your COVID infection now and will soon be back on track to start your MTX.

Sending some💐

BTW those ((())) from Stickywicket - as rare as hen's teeth they are😁

Take care

Toni x

frogmorton

Just wondering how you are doing @JessicaLizzie ? Jess.

We haven't seen you posting lately. I hope you are over the COVID and doing a bit better.

Sending ((()))

Toni xx

JessicaLizzie

Hi @frogmorton for some reason I didn't get an email notifying me of your message. Anyhow, I am now over the covid 🙌 and last night took my second week dose of methotrexate. My steroid reduction plan remained the same despite the methotrexate being delayed due to having covid. Not sure if it is coincidence or something going on, but the last two nights I've had a raised temperature (not enough to be a full fever but 1° higher than my normal). I'm also feeling incredibly nauseous with the methotrexate. I've heard about ginger - I wonder if those ginger tea drinks would help?

Overall I'm really quite struggling - I'm just so exhausted and weak, my mental health has gone rock bottom from basically being housebound since 1st August. Social care have been getting carers and PA in to help but I also have Autism/Aspergers and I've found that too overwhelming. I'm now waiting to go into respite care. I'm so upset and worried I'm not going to be well enough both physically, mentally and with my Autism to return to uni in January to complete my Masters. I think I'm just completely burnt out in terms of Autism, mentally and physically.

I wish I could give a more positive reply 😕 I have found this forum so helpful and most importantly you all give me the encouragement and hope to keep going, which I'm so grateful for.

frogmorton

Aww @JessicaLizzie I am so sorry you are still struggling so much. Such bad luck having got COVID just when you were about to start your treatment thereby delaying it.

When I am flaring I very often get a temperature slightly raised not much a low-grade one just keep an eye.

As for feeling a bit queasy on MTX people try different things to help with that (and it's usually only the first day or so after taking it?) personally I advocate savoury for any nausea. I've probably said before when I was veggie not vegan it was cheese and onion pasties all the way. Do not get hungry and make sure you get extra sleep/rest ideally sleep though. I treat it a bit like a hangover.

I hadn't realised you have extra issues to deal with your Autism too that will make things much tougher. I have a very good friend who is receiving end of life care at home (all very, very recent) and she and her wife are really struggling with people in the house. The intrusiveness of it all. I think they are ready to throw in the towel with carers full stop. Time will tell though.

Don't forget us we are here for you while things hopefully get gradually sorted out for you.

I am sending you some ((())) keep in touch

Toni x

stickywicket

Oh my goodness! Still, it continues for you! @JessicaLizzie , you are so stoical and uncomplaining.

You are training to be a health professional (and maybe should think of all this as part of your training, not as a distraction from it) I think you should carefully read your middle paragraph as if it were from a future patient of yours. I'm 100% sure you would be far gentler on that patient than you are with yourself. One thing at a time. Let's get your own health on an even keel before worrying about the course.

As regards methotrexate, I take mine with food, some take theirs just before bed to sleep off side effects and others have to increase the folic acid - under instructions only. As for ginger tea (ginger biscuits?), as my Mum used to say "If it does you no good, it'll do you no harm." I'm sorry, I can't relate to the raised temperature. I'm hopeless with mine. I only bought a thermometer when covid started😚 But, a good idea to monitor yours.

JessicaLizzie

Thank you both @frogmorton and @stickywicket - my PA has just gone to the shops for bread, bananas and ginger tea (already got the biscuits!). I have folic acid every day except the day I take MTX, and I read somewhere about having a carb heavy meal before taking it at night which I have been doing. Still feeling nauseous today (woke up at 4am with it) and I took MTX on Thursday evening. One of the symptoms of a flare with Stills Disease is a high temp which for me tends to be in the evenings/overnight/early morning and goes during the day. I've just had some bloods this morning so fingers crossed all looks okay and the temp was a bit of an anomaly. I'm in pain but I think that's self inflicted from trying to do too much around the flat. I'm the worst at pacing myself!!

I've got some cheese and onion pasties in the freezer - one of my fave foods so definitely will be having those (any excuse)!

Despite feeling rough today physically, mentally I'm doing a bit better. I think because I know respite is going to be happening and even though it will take some adjusting to and I will probably hate it for the first few days, it means I'm not sat here alone all day thinking that I should be doing xyz in the flat.

Also I'm finally getting a 4 wheeled walker/rollator - it should arrive the latest by Wednesday and I can't explain how excited I am! I never ever imagined me being seen dead with one of them in the past but here I am. It means I can begin to walk outside and build up strength and muscles etc with the assurance I can sit down as soon as it's too much.

I hope both of you are doing okay, wish I could thank you more than just saying the words as it is so helpful speaking to people who 'get it'.

stickywicket

I hope the carbs, ginger etc are helping. Whatever works.

I do understand about the temperature. My early diagnosis was Stills (not Adult Onset as I was only 15) and I recall the raised temp.

I love your ability to distinguish between the bad physical day(s) and good mental ones. And that you can rejoice in the latter despite a bad physical onè. I do hope the ŕollator helps. I love mine. It takes me to places where, otherwise, I couldn't go, at least under my own steam. I also value its seat. It's at the right height for me which many chairs, even in medical settings, aren't. A friend uses hers for queueing at checkouts.

You don't have to thank us (though it's nice whèn people do). We have all had a leg up from others. It's good to be able to use arthritis positively.