Illness, methotrexate and Stills Disease

JessicaLizzie

Hi

It's been a while since I've been on here. I *think* I may have come down with a virus. Its so hard to tell as all the symptoms are the same as my stills disease - really sore throat, swollen glands, achey and hurt all over. What's different which makes me wonder if it's a virus is that I have totally gone off my food, feeling very nauseous and my stomach feels sore. I'm on 20mg Methotrexate injections, 10mg pred, and have an appointment with Rheumatology to go on Anakinra as well on Friday.

My question really is at what point do you decipher that you should go to the doctors? I know you have to be a bit careful when on these meds but equally don't want to burden the NHS any more than it is.

Jess

stickywicket

Hello again, Jess.

This is not easy, is it? So much can be the disease, the meds or something new. I honestly don't think we're in a position to say which this is but I am sure that you need to get something sorted before embarking on the new med. I don't think, for one minute, anyone would regard this as burdening the NHS. It's just being sensible.

I'd suggest you ring your rheumatology helpline for advice. If you really, really prefer not to do that, your local pharmacist might be able to offer an opinion at least as to whether or nor it might be disease or meds related. But your rheumatology people do need to know too before you start the new druģ.

Good luck with it all and do let's know how you get on.

JessicaLizzie

Hi

I hope you're keeping as well as you can be. Lovely to see you're on here - I disappeared towards the end of October, I think everything caught up with me mentally and I had a bit of a breakdown. I really valued your support back when I was diagnosed.

It's certainly a slow journey isn't it! Meant to be returning to Uni this week and yet my Stills started to deteriorate just before Christmas and I've got worse again. I do think I've probably got a virus on top of the stills right now. They say to contact a professional if you have signs of infection but the signs of infection are the same signs as my stills! And viruses also share all the same symptoms so I don't know when I'm meant to be reaching out or not. I will let rheumatology know when I go on Friday if I'm still unwell by then. Just don't know whether to put myself through a hefty phone queue for the doctors tomorrow or if it doesn't warrant that.

Have you/anybody been on Anakinra? Just wondering if there's any tips for it. I know somebody mentioned carbs before methotrexate which weirdly helped!

Jess

stickywicket

How are you today? I guess the best we can hope for is no worse. This must all be so disappointing for you just as you're hoping to get back to uni. I am so impressed by your determination. You do deserve success. And I really am sure it will come.

Please forgive me for being very brief tonight. I've had a cold - just a short one but,, of course, RA never misses an opportunity so I'm quite flaked out today. I think bed will not be far off.

Good luck, with this whatever it is. Don't feel you must be on here all the, time. You owe us nothing. But we're delighted to be able to put our experiences to good use whenever you wish.

JessicaLizzie

Hi @stickywicket - gah so sorry to hear about the cold - these things wipe you out in ways others just wouldn't understand. I hope you have managed to get some sleep and rest up. I'm definitely feeling better today than I was yesterday. I've also read some good reviews on anakinra for stills disease which has given me some hope. Obviously everybody is different and so is reaction to treatment but fingers crossed it helps (metaphorically fingers crossed, as mine haven't returned to that level of flexibility 🤣). My dark sense of humour has flourished since getting this disease - admittedly it didn't take much 😂😂

stickywicket

A dark sense of humour is essential for coping with arthritis. Actually, with most things. I don't know how people with no sense of humour cope with life at all.

Well, I put 'anakinra' for aosd' nto the Versus Arthritis search engine (top right) and got an encouraging former thread. Try it.

How's things today? Hopefully, good enough to make you feel optimistic about your appointment.

(I'm doing better today. The asthma is on the wane and I'm breathing better. I do like breathing😆)

airwave

When to give in and ring the GP? That’s easy, when you can’t cope at home and need support. Well that’s what I do, I doubt if they will thank you for going in with an infection though. Covid test? Or stay clear for ten days? Why not just a phone appointment? Is there a practice nurse that works as a gp? Or phone the Pharmacist?

There you go a few suggestions.

its a grin, honest!

frogmorton

Morning @JessicaLizzie

I didn't realise you had two threads going, but I found you again.

Looks like @stickywicket has probably spotted the old thread which I linked into your other thread for you. It is encouraging Sticky I have to agree kLets have everything crossed.

Jess it's getting so close to Friday now you'll get there.

I've just been released from my 5 days mandatory 'stay at home' with COVID, but will stay in a bit longer until I test negative hopefully soon.

Surprising how we can be knocked sideways by a virus having said that a good flare can feel like a virus to me too fever, queasiness aches....

Sending some ((()))

Toni xx

JessicaLizzie

@frogmorton I actually started this thread because I wrote one up and then it didn't post for some reason. But then it randomly appeared. I think it is when I use my phone to come on here that I have issues - it won't let me tag people on my phone either...it does weird and wonderful things! I am glad that you and @stickywicket seem to be getting there on the mend. @frogmorton I don't know if you had the covid treatment thingy - I had it when I caught covid (it was just an IV infusion) and it really helped - I think I would have been much, much worse if I hadn't had that treatment. It took me 15 days to test negative so fingers crossed that you test negative soon!!

I had my first day back at uni today. I was super anxious but it went well! I didn't manage the full day and my support worker had to help carry things while I walked with my walker. But, being there for 3 hours is a huge huge achievement for me. I am absolutely exhausted in every way, and in pain everywhere but I am so hoping the Anakinra will help with that. And in time I will build up more strength and ability to walk more without having to sit down etc. I wish my hospital appointment was tomorrow so I can just get on the medication and try to live my life. I am hoping my bloods will all come back okay so that I can start on the Anakinra on Friday.

@airwave thank you for your reply 😊 I have Autism so struggle to know when I am unwell and how 'bad' it is/isn't. I have a PA who comes in the evenings and daytime at the weekend who does all the 'normal' housework type stuff as I just cannot do it since I came out of hospital with the Stills Disease. I also very much worry about taking up NHS time/know how stretched resources are, and just to add it to it - phone calls are extremely draining for me with my Autism so calling the doctors for an appointment (they sadly took away the option to book/request appointments online during covid and never brought it back) is my idea of hell!! Wasn't covid as have been doing daily tests and not all that long ago had my booster plus had covid too.

Anyway, I am rambling as always! Still having moments where I feel so angry and frustrated at this horrible disease and how it's ruined so much of my life, but also having some moments of hope like with the Anakinra and even being able to walk around campus today (helped by the fact campus is just one building with different blocks coming off the centre of it so not a huge walking distance).

I don't think anything/anybody can prepare you for just how much of a journey this whole process is. I think I was rather naive back in September last year when I thought I would be all fine and dandy come January this year!!!

P.S @stickywicket - I am quite a fan of breathing too, I find it helps with the whole life and living thing 😅

stickywicket

3 hours at uni!!!! Wow! Of course you're exhausted. But you did it. That's so impressive.

Now, if you are at all able, give yourself a proper day off tomorrow so's you'll be in better shape for Friday. You might not have the choice. Your body might make the decision for you but, whether or not, you've earned it and you need it.

Please let's know how it goes.

And carry on breathing😀

frogmorton

Well Jess you are incredible!!!!!

👏

You did it you got there and managed the whole session I am thrilled for you. That's what your PA is for to help you to do the things you need to do and you did it!

Pat on the back for you (but gently!)

I am so proud of you and hope you are of yourself.

Sometimes our messages do seem to vanish only to reappear I am happy to stick to this thread.

My test looks definitely fainter today so very much hoping I am finally on the mend from the dreaded COVID. I am feeling much much better now thank you 15 days positive! Oh no I hope that's not me.

Very very best of luck for tomorrow I will have everything crossed i can cross for you ((()))

Toni x

JessicaLizzie

Well today is not a good day. I'm in so much pain. Keep crying. Want to avoid oramorph if I can. My fingers are so so painful. If you happen to have any tips I'd appreciate it. I've had a bath which has helped my back a bit but nothing for my fingers. I don't know how I'm going to continue this course I'm gutted.

stickywicket

Right. Fingers first. Are they any better? I've no real tips even though mine started in my fingers. Some go for hot water. Others for alternating hear and colď. (To get the cieculation going?) Nowadays there are finger supports but I don't know how useful they are.

I do hope you're feeling more optimistic, though. Personally, I do think you'll finish the course. I just wish the timinģ had been better for you. Who knows what the new med might bring? You were always going to be wiped out today. You achieved so much yesterday but it took so much out of you both physically and emotionally. I do believe you'll get there, Jess. Let''s see what tomorrow brings. Good news, I hope. Have some gentle ones. (((( ))))

Trish9556

Hi @JessicaLizzie

I'm sorry you're having a tough time. I don't know how you're amazing to do what you are. I don't know anything else that might help you aoat from "Hot Hands" or "Little Hotties" they're tiny little wheat type bags that come in a packet of two that you activate by opening the packet and squeezing. They last about 12 hours on average. I've used them for over five years.

They're brilliant for hand pain and if they work for you buy them in bulk on line. You'll pay about half price that way. Also perfect for popping in gloves and pockets.

Love n hugs

Trish xx

JessicaLizzie

Well I saw Rheumatology today who said all my bloods have come back fine. Yet this is the worst I've been since around the time I was diagnosed. They'd previously told me I would be starting anakinra today but because the bloods were normal they were undecided what to do. I basically sat there crying saying I can't continue like this, it's like I have the flu plus arthritis 24/7 and there's no quality of life. The consultant saw how painful and swollen my fingers are. They're now going to start organising me starting Anakinra but because it's a biological treatment it goes through to some specific team who then contact the manufacters who will then contact me to deliver, and then I will have a community nurse come out to show me how to use it before I can go solo. I'm just so upset because I had been clinging on to the appt today and now it's even longer. Not helped that I've got home to a note from the pharmacy saying I wasn't in so they couldn't deliver my meds and charge £3.50 to have them re-delivered. And I opened my bag of hospital pharmacy meds to find Rheumatology hadn't/somebody hadn't requested the gastro resistant form of steroids and last time I had the normal ones I just brought them back up every morning. Also the hospital pharmacy only let me buy one 32 pack of paracetamol and I'm taking it 4x daily so that means I'm going to have to leave my flat again at some point to get more. The drive to and from hospital and using my walker has left me in even more pain that I've just taken some oramorph.

So I'm feeling pretty crap. I wish there were more people in the UK with this disease so others as a whole would understand how horrible it is. Not that I'd wish this on anybody because it truly is so awful.

Sorry for being a negative Nancy 😪

JessicaLizzie

JessicaLizzie

Well I saw Rheumatology today who said all my bloods have come back fine. Yet this is the worst I've been since around the time I was diagnosed. They'd previously told me I would be starting anakinra today but because the bloods were normal they were undecided what to do. I basically sat there crying saying I can't continue like this, it's like I have the flu plus arthritis 24/7 and there's no quality of life. The consultant saw how painful and swollen my fingers are. They're now going to start organising me starting Anakinra but because it's a biological treatment it goes through to some specific team who then contact the manufacters who will then contact me to deliver, and then I will have a community nurse come out to show me how to use it before I can go solo. I'm just so upset because I had been clinging on to the appt today and now it's even longer. Not helped that I've got home to a note from the pharmacy saying I wasn't in so they couldn't deliver my meds and charge £3.50 to have them re-delivered. And I opened my bag of hospital pharmacy meds to find Rheumatology hadn't/somebody hadn't requested the gastro resistant form of steroids and last time I had the normal ones I just brought them back up every morning. Also the hospital pharmacy only let me buy one 32 pack of paracetamol and I'm taking it 4x daily so that means I'm going to have to leave my flat again at some point to get more. The drive to and from hospital and using my walker has left me in even more pain that I've just taken some oramorph.

So I'm feeling pretty crap. I wish there were more people in the UK with this disease so others as a whole would understand how horrible it is. Not that I'd wish this on anybody because it truly is so awful.

Sorry for being a negative Nancy 😪

JessicaLizzie

Well I saw Rheumatology today who said all my bloods have come back fine. Yet this is the worst I've been since around the time I was diagnosed. They'd previously told me I would be starting anakinra today but because the bloods were normal they were undecided what to do. I basically sat there crying saying I can't continue like this, it's like I have the flu plus arthritis 24/7 and there's no quality of life. The consultant saw how painful and swollen my fingers are. They're now going to start organising me starting Anakinra but because it's a biological treatment it goes through to some specific team who then contact the manufacters who will then contact me to deliver, and then I will have a community nurse come out to show me how to use it before I can go solo. I'm just so upset because I had been clinging on to the appt today and now it's even longer. Not helped that I've got home to a note from the pharmacy saying I wasn't in so they couldn't deliver my meds and charge £3.50 to have them re-delivered. And I opened my bag of hospital pharmacy meds to find Rheumatology hadn't/somebody hadn't requested the gastro resistant form of steroids and last time I had the normal ones I just brought them back up every morning. Also the hospital pharmacy only let me buy one 32 pack of paracetamol and I'm taking it 4x daily so that means I'm going to have to leave my flat again at some point to get more. The drive to and from hospital and using my walker has left me in even more pain that I've just taken some oramorph.

So I'm feeling pretty crap. I wish there were more people in the UK with this disease so others as a whole would understand how horrible it is. Not that I'd wish this on anybody because it truly is so awful.

Sorry for being a negative Nancy 😪

stickywicket

((( )))

You seem to have had problems getting this post to register, Jess. Just another difficulty in a very difficult day. I hope today will be a better one.

I'm glad you will have your anakinra even though it was tough getting it prescribed. I think there's usually a delay. Let's hope this is a short one. I can't explain the discrepancy between pain/inflammation and bloods. It can just happen sometimes.

I guess the meds delivery problems were just the final blow. Try your GP for more paracetamol. Or, could your P.A. or a friend buy some for you? If I need any I just add them to my supermarket delivery list. I don't use many. I'm presuming you have a pre-payment certificate for your meds. If not, check here https://www.nhsbsa.nhs.uk/help-nhs-prescription-costs/nhs-prescription-prepayment-certificate-ppc

Did you manage to get the steroid thing sorted? I hope so. Last time I was on antibiotics I got the bogstandard amoxycillin and was soon bringing it back. Unfortunately, we all have to do our own 'medmin' and usually at times when we feel least able.

You are a very strong person, Jess, even though you probably don't believe me right now. Things will improve. One way or another, they do.

JessicaLizzie

@stickywicket I have no idea how to delete posts, or if that's even possible but yes, I was having a bit of a nightmare as it kept saying it couldn't post and then my phone was freezing!

The rheumatology specialist nurse said she would start the process of applying for the biologics yesterday as apparently can take a few weeks before it's all sorted. Just gutting really as I have been holding onto Anakinra giving me a quality of life back and that's delayed. I'm getting worried about how I am going to get through my course at uni - I have only just felt well enough today (saturday) to catch up on the lectures I missed last Wednesday. Tonight I have methotrexate so tomorrow is a wipe out, which leaves just monday and tuesday to actually get uni work done (i.e work I am meant to do, not just catching up from the week before), but also have appointments. I am also worried as my placements start in June and I know there's quite a few months to go yet before then, but Rheumatology thought I would be better than where I am at right now with the methotrexate, and because it seems to be such a long slog I really don't know if I will be well enough by then. Worst case scenario I graduate with an MSc in Allied Health Sciences but I don't know if that would mean I could go into research (my potential back up plan long term as that would enable me to work from home mostly and at my own pace/working hours). I guess I am worried I will graduate and not have gained anything from doing the course. I would quite like a research role as I think it probably is more suited to me than a hands on OT. No idea how to get into that though, I would need to enquire.

I've not managed to sort out the meds, everywhere is closed over the weekend anyway - both my pharmacy and Rheumatology so going to leave that stress to next week instead. Thank you for the link for the pre-payment card - I am actually on 12 different medications plus inhalers! I have a HC2 form as I am a student so qualify for free prescriptions due to low income, but used to have the pre-payment card.

I really hope things do improve soon because I am really struggling. I don't want to be negative in front of my PA or uni friends so it just builds up and comes out when I am alone. My psychologist of 2.5 years is leaving and my last session with her is this week so I have double the stress coming.

I hope you are feeling better @stickywicket and @frogmorton and realise how many people you help on here!

stickywicket

Hi Jess. I'm thinking of you and sending positive vibes your way. I saw this post yesterday but was very busy all day as I had an ortho appt. today which involvex getting up at 5am, a long, beautiful drive through the snow and ice there and ditto back. I've just woken up and had a uppa and must now crack on with the meal.

Stay strong. That's who you are.

By the way , @frogmorton is currently on holiday - I hope. ie I hope she recovered quickly enough.

JessicaLizzie

Thank you @stickywicket 😊

airwave

Jess, we know what you’re going through and our hearts are with you. We have a common bond, pain, not something we like to think about but whatever type of arther we have it produces the same problem.

When we post on here we share our lives, having arther means we don’t have to apologise, we don’t have to say sorry because we have arther on our backs. It’s not our fault.

its a grin, honest!

JessicaLizzie

Thank you @airwave . It really does help being on here and feeling less alone - though I would never wish this on my worst enemy!

airwave

I would!

it’s a grin, honest!